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Aortic Aneurysm Support Group

  • 1.  Aortic Aneurysm Support Group

    Posted 06-18-2017 10:54
    Mended Hearts Community,
    30 days ago, I had aortic arch surgery at NYP Weill Cornell Medical Center to repair a aneurysm of the aortic arch. Although over 500,000 bypass surgeries are performed each year, less than 15,000 are aneurysm surgeries. 

    If you've been diagnosed with an aortic aneurysm or are survivor of aortic aneurysm surgery, I'd like to connect with you by email.
    Please include your age, year of surgery and if you completed rehab.
    Thanks,
    Vic
    Victor Fabry
    --
    Vic Fabry
    MHoMC, President
    Greylock Group, CEO


  • 2.  RE: Aortic Aneurysm Support Group

    Posted 06-19-2017 05:39
    I had surgery for an aortic branch aneurysm and a bicuspid aorta in 2006. I am now 64 and wasn't prescribed rehab. I ended up getting a branch replacement (the surgeon's original plan was to repair) and a mechanical valve. BTW my mother had the same condition and died at 51.

    Karen Christian 
    Kchristian@nctg.com

    ------------------------------
    Karen Christian
    San Marcos CA
    ------------------------------

    Original Message


  • 3.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 11:33
    Hello Vic. I had aortic aneurysm branch repair and aortic valve replacement surgery due to Bicuspid Aortic Valve and stenosis in 2010. I was 45 at the time of my surgery. Three years later I had double bypass surgery due to blockage caused by the BAV/anuerysm surgery. I did not go through cardiac rehab for either surgery. However, in 2016 after I had gone through a year of cancer treatment my cardiologist felt it would be beneficial to go through rehab. I had 36 sessions. I now recommend rehab for anyone going through heart surgery. I thought I was doing well enough on my own after my surgeries but realize now I really needed lots of support and instruction from a licensed coach. I will be having another procedure soon to repair mitral valve regurgitation and I am hoping to be able to go through cardiac rehab once again.

    ------------------------------
    Brenda Williams
    Cabot AR
    (501) 843-4727
    ------------------------------

    Original Message


  • 4.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 12:06

    I too had a bicuspid aorta valve and an aortic branch aneurysm.  My surgery was in December 2013.  They prepared me for a valve replacement, but the valve had not calcified so did not merit a valve replacement.  The aneurysm was repaired by the "David's Procedure", which ties into the aortic valve.  You can read more about it and watch a video by googling "David's Procedure".  I did attend cardiac rehab and contribute my recovery to that.  Was very active prior to the surgery so was not excited about going, but it was the best thing I ever did.  I had some "hiccups" along my initial recovery, because I was allergic to two of the medications they were giving me.  I did experience Post Surgery A Fib and got blood clots in my legs and behind my eye within the first 2 weeks after surgery.  After they got the water pulled off of me and had a cardio version to get me back in rhythm, I've been great.  In fact, I went cross-country skiing 5 weeks post-surgery.  Of course, I stayed on the easy trails and took it slow, but I was out there!  While in rehab an opportunity came my way to volunteer for a program that I needed to be able to walk a mile and run a mile.  I could walk the mile no problem, but I never had been a runner.  One of the nurses and cardiac rehab worked with me, and I met my goal of running the mile and being able to volunteer for the program the June following surgery.  I've never had any further problems, but I follow the cardiac diet closely and exercise is a priority for me.  After several weeks of cardiac rehab, it dawned on me, that I too was a "heart patient" and always would be.  It was up to me to do everything I could to protect that valve. 

     

    I was told at time of surgery that according to the size of the aneurysm, they estimated that it would have burst in about 6 weeks.  I'm one lucky lady, especially since my surgeon said that the murmur was so slight, that most cardiologist would have just watched it.  It was my primary doctor who had experienced the same thing a year earlier that detected the problem.  I will be eternally grateful.

     

    I live in Boise, Idaho and am part of Chapter 380.

     

    In Joy and Gratitude

     

    Elaine Grossaint

    (208) 375-2408 wk

    (208) 866-2469 cell

     




    Original Message


  • 5.  RE: Aortic Aneurysm Support Group

    Posted 06-20-2017 01:21
    Victor, my name is Steve Balashek, sbalashek@bresnan.net. I had an aeortic aneurysm caused in part, by having a bicuspid valve that also became stenotic. I received my new dacron aeortic arch and a tissue valve on 30 November 2015, 9 days before my 69th birthday. The operation was performed by Dr. Brett Reese and his team at the University of Colorado Hospital at the Anschutz medical campus  (formerly Fitzimmons Army Hospital) in Aurora, Colorado. I was released on Saturday, 5 Dec, primarily because we did not have transportation on Friday. On Thursday, Friday and Saturday I walked at least 1 mile around the halls of the ward, each day. On the following Monday I attended the Mended Hearts Christmas pot luck in Cheyenne, Wyoming where I live. After the 6 week no drive period my wife and I went down to Las Vegas to avoid the snow and prevent me from doing something stupid, like trying to shovel. After our return to Cheyenne in April, I was able to resume attending phase 3 rehab which I had been in since my double bypass in August 2009. I am now back up to doing rehab 3 days per week and walking 4 to 6 miles on the other days. A week and a half ago I walked about 16 miles as part of local Relay-for-life activities.
    I can not emphasize enough the importance of rehab. I tried the no rehab route about 6 months after my bypasses when I figured I could do it alone using the facilities on FE Warren AFB. It was too easy to not go, and there was no support. After I got my stent in November 2010, I went through phase 2 rehab again and then started going to phase 3 sessions regularly. I am pretty sure that doing that rehab helped me recover more rapidly after my aortic arch and valve surgery. I do not think cardiac rehab ever really ends, or at least it shouldn't.


    Sent from my Galaxy Tab® A



    Original Message


  • 6.  RE: Aortic Aneurysm Support Group

    Posted 07-08-2019 03:37
    Hi Vic
    my name is Laura.i live on Staten Island and I will be 69 years old tomorrow. On May 28 a 4.3 cm aneurysm of the aortic arch was found when having a routine chest X-ray. We were leaving for  cruise to the Bahamas 2 days later and I was panicked that I might explode. I actually got in to to see the cardiologist the next day. He did his own echo and found it to be slightly smaller. He recommended a recheck in 6 months. I have no symptoms. I never smoked, don't drink and do not have high cholesterol, hypertension or diabetes and no family history. Being a retired nurse I started my research and found an aortic aneurysm program at NYU and have an appointment tomorrow on my birthday. Most health care professionals I've talked to have all said to do the surgery now while it's manageable and I'm "younger"  Needless to say I'm terrified! Who does elective heart surgery? I have a 20 year old that I adopted when he was 6 and I need to see him thru 3 more years of college. I have a 2 year old granddaughter I need to see grow up.
    My questions for you are how large was your aneurysm. How do you feel now. How about you fill me in on your whole story from point if discovery to today. We're you ever told you could die during surgery. How long were you in hospital. Was it open chest surgery or endovascular.. Did you go to rehab. In other words if you choose to disclose all on a public forum, please do so for me.
    i hope your feeling better. You look very healthy in your hospital gown in bed.

    ------------------------------
    Laura Calamuci
    Teacher
    retired
    Staten Island NY
    ------------------------------

    Original Message


  • 7.  RE: Aortic Aneurysm Support Group

    Posted 11-20-2019 19:04
    Hello,  My name is Jeff and I might be able to put your mind at ease. In 1989 they found an aortic aneurysm and in 1990 was medically discharged from Army. Then by May 1991 it had grown to 5.5 cm. It was time for surgery. I chose the Medtronic hall conduit valve vs pig valve and was told it would last a long time, perhaps the rest of my life without having to be changed out.  Well it's now 2019 and over 28 years post surgery. I still have the same valve. The only thing that has happen along the way is in November 2008 I started having Afib. Finally after many episodes of Afib, finally in May 2009 they put me on Flecainide. Haven't had Afib since.  I can't believe the valve has lasted this long. God is good. I do have annual echocardiograms and I like seeing the look on my Dr's face when they realize how long ago my surgery was.  In closing I would like to wish you well, and YES heart surgery can and is scary, but putting it off can be scary too. Only you can make the decision to have surgery.  Just a added note in 2011 I had a neck fusion surgery and had to wear a neck brace for 6 weeks. I  thought that was worst than my heart surgery.Also for you others that might see this . Yes I have been on warfarin since May of 1991.  Hope this helps, and God be with you.

    ------------------------------
    Jeffrey Dawson
    retired
    ------------------------------

    Original Message


  • 8.  RE: Aortic Aneurysm Support Group

    Posted 11-20-2019 20:18

    Jeff,
    You are very fortunate indeed. If you've had the mechanical valve for 28 years, you were a relatively young man to have valve surgery.
    I had aortic aneurysm surgery in 2007, and at that time it was common to replace the aortic valve during the procedure.  Today, surgeons have developed techniques to "save" the heart valve during aneurysm repairs.  My Afib is managed with two meds and of course, I take Coumadin to reduce the chances of blood clots. We are both lucky men.
    all the best,
    Vic Fabry
    Short Hills, NJ 



    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 9.  RE: Aortic Aneurysm Support Group

    Posted 11-22-2019 11:49
    Hi to all! I had AA surgery in January 2019. It was 5.0 but surgeon said it was bigger (6.0) once he opened me up. I have a friend who had one and didn’t know until it ruptured. She was so fortunate that she got to the hospital in time. Her story made a big impression on me, and I chose to get it done when the docs gave me the go ahead.
    I am doing great, and feeling stronger than ever due to the cardiac rehab. I continue doing the training at my local YMCA. I will send a pic from the Rehab center at Scripps Memorial. I feel so fortunate they found the AA when looking at something else.
    Prayers for peace of mind are sent your way.


    Original Message


  • 10.  RE: Aortic Aneurysm Support Group

    Posted 10-21-2020 16:32
    Hi Andrea,
    you're story has given me more faith. I'm scared and overnight a diagnosis of a descending aneurysm really has put things into prospective x

    ------------------------------
    cindy wilday
    SHREWSBURY
    ------------------------------

    Original Message


  • 11.  RE: Aortic Aneurysm Support Group

    Posted 10-21-2020 17:27
    Cindy,
    It's always beneficial to speak to another patient who has experienced the same procedure.  As experienced as your doctor, surgeon or nurse is, they rarely have had an aorctic aneurysm.  My cardiologist survived an ascending aortic aneurysm about four months after my surgery and he said the experience made him a better and more compassionate physician. 
    Good luck to you.
    Regards,
    Vic Fabry
    CEO, Greylock Advisors, LLC 




    Original Message


  • 12.  RE: Aortic Aneurysm Support Group

    Posted 02-20-2021 19:48
    Would love to speak to anyone who would be willing- ct exam of neck revealed an ascending aortic aneurysm - they will now do a ct of chest to be more specific but am scared right now and would love to speak to someone

    ------------------------------
    prince carpenter
    marketing
    NJ
    ------------------------------

    Original Message


  • 13.  RE: Aortic Aneurysm Support Group

    Posted 02-20-2021 21:28
    Hi Prince,
    You are not alone and I this site is full of wonderful people that have been through it.
    I found out about my aneurysm 1.5 years ago. Im 42 years old and in good health. After ct cardiologist did an echocardiogram and found out I had a biscuspid aortic valve that caused my aneurysm.
    My protocol is watch and wait. 
    My valve or my aneurysm will dictate when they finally do operate. 
    What size is your aneurysm and have you found a good cardiologist?

    Beth Moon



    Original Message


  • 14.  RE: Aortic Aneurysm Support Group

    Posted 02-20-2021 21:53
    Beth,

    I’m 4 months post surgery for an ascending aortic aneurism that was also caused by my having a bicuspid aortic valve. My aneurism was 5.0 cm at time of surgery. Surgery had gone well, along with recovery. What size is your aneurism?

    Thanks,
    Scott Woodward

    Sent from my iPhone


    Original Message


  • 15.  RE: Aortic Aneurysm Support Group

    Posted 02-20-2021 22:28
    Hi Scott,
    Mine aneurysm was 4.3 and is now 4.5.
    Congratulations on your recovery! Did they replace/repair your valve?
    How are you feeling?

    Beth Moon


    Sent from my iPhone



    Original Message


  • 16.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 13:08

    Beth I am 51 and 3 years ago was diagnosed with an ascending aortic aneurysm. It was 3.8 if I remember correctly.  The first doctor I went to wanted to see me in six months and then yearly after that.  Well he left the practice so I found another doctor.  He looked at my two scans and said I'll see you in five years. By then the aneurysm might be about 5cm.  I am scared to death. Since then I have had covid and unfortunately gained weight. Been under stress and now I think it is anxiety but have just a chest tightness I guess I would call it.  I did call the last cardiologists office three months ago and asked if I could have the scan at three years which with the timing of all would be this summer.  I recently reached out to another facility and am getting a referral to get another opinion.  I feel lost. My mother died from an operation to repair her dissected ascending aortic aneurysm. She died from a stroke from the surgery. Anyway I have no one to talk to as no one understands.  

    Any advice from anyone would be appreciated 

    also dis any doctor give you restrictions?  I'm doing cardio workouts.  Fairly intense.  Not sure exactly what I shouldn't be doing 

    Sincerely
    melanie 



    ------------------------------
    Melanie Schlueter
    ------------------------------

    Original Message


  • 17.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 13:41
    First, get a new cardio. Period. End of story.

    Second, 3.8 is not big. 5.0 is surgeon consult 5.5 is when they go in.

    They are right, you may never reach it, and if you do, surgery may not be the way they treat it then.

    All the aerobic exercise is great. Do not lift more than 1/2 of your body weight, ever.  But 10 lbs, 20 is ok.

    Your chest pain is not your aorta. If it bursts. You will know it and it will be urgent. It won't at your size.

    Find a new doctor that measures it annually, This is about YOUR comfort.

    ------------------------------
    Charles Bouley
    Las Vegas NV
    ------------------------------

    Original Message


  • 18.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 14:40
    I had my aorta operated on at 5.0 cm. True, you have to careful with how much you’re lifting. My Cardiologist told me not to go above 55lbs, or to
    strain to get the last rep up while lifting weights.
    Also being on a beta blocker will help keep your
    blood pressure low enough so the aneurysm will
    not grow as fast.


    Sent from my iPhone


    Original Message


  • 19.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 14:45
    Thank you so much for responding!  I have had my medical records sent to UNMC and hope to get a call from them next week.  Hopefully it is still under 4 now 3 years later!  That would be great!  Reading all these stories sure is so very helpful as no one really understands this feeling and I feel alone.  I very much appreciate you all!!!

    ~

    ------------------------------
    Melanie Schlueter
    ------------------------------

    Original Message


  • 20.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 14:49
    Melanie,
    Your cardiologist should have told you that an Ascending Aortic Aneurysm is not classic heart disease, but it's usually caused by a genetic abnormality that is inherited from your mother, father or grandparents.
    Some patients with an ascending  aortic aneurysm have a connective tissues disorder called Marian's Syndrome.  You can take test to determine this.
    It is important to have a experienced cardiologist to
    monitor your condition with regular echocardiograms and CTA or MRI as appropriate. You need a cardiologist who you trust, who can diagnose your condition and advise you correctly.  You 
    can email me with questions at fvfabry@gmail.com.
    Best regards,
    Vic

    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 21.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 14:53
    thank you all for participating in this discussion. the fact that others are going through the same anxiety as you is helpful; this is what Mended Hearts and this forum is all about.
    My heart condition is another issue. It is important to have cardiology checkups at least yearly or more often. Other conditions could develop.

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655


    Original Message


  • 22.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 16:51
    Very constructive feedback here from everyone.  A few things I want to underscore:

    3.8 is quite small.  Given normal growth rates you are possibly looking at 20+ years before anything needs to be done, if ever.  Beta Blockers are used for AA patients to lower BP and slow growth, good idea.  I was told that resting BP should be 120/70.  Exercise is actually good as long as you don't lift "heavy" weights; walking, running, and cardio have been encouraged.   "Heavy" is relative.  I was told that if grunting or straining is necessary, it's too much.  On the other hand if I can talk through a set of weights in comfort it's ok.

    Of critical importance, go to an experienced specialist in this field!  Not all Cardiologists know this condition equally well.  In fact, I found it remarkable how inconsistent the initial advice I received was.

    Lastly, you are not alone.

    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 23.  RE: Aortic Aneurysm Support Group

    Posted 01-06-2022 17:30
    Hi there, I just wanted to followup with the group since my last post abt 3(?) wks ago. Nothing much diff yet. As I may have mentioned, the way my 3.9cm was found was thru having an echo on my heart due to a syncope episode I had in early November. My doc was waiting for the monitor I was wearing to come back w results. Came back normal sinus rhythm. So hoping to get to see my doc soon. Sent him message today asking such.
    Again I am SO THANKFUL for this group. All the support I have received from you has been amazing. I’m still freaking out that some day I may need surgery. I am imploring my PCP to get me setup w a cardiologist. He doesn’t seem too thrilled to do so at the movement but we’ll certainly be chatting about that when I see him next. Thanks again. Keep you all posted

    Sent from my iPhone


    Original Message


  • 24.  RE: Aortic Aneurysm Support Group

    Posted 05-10-2021 11:27
    Hello. I'm a 58 year old living in Las Vegas. Until age 55 I was unhealthy, high BP, AFib, Cholesterol drugs. at 55 I became a Vegan and lost 110 pounds. Began exercising seven days a week, over five miles a day, yoga, weights. My aorta has gone from 3.8 to 4.3 in five years. They are currently in a wait and see territory. I, of course, am terrified. All I seem to think about is the upcoming surgery, even thought two doctors say I may never, ever need it. My BP went to normal with no drugs, but now they have me on Ibresartan 75mg and it is now 110 to 125 over 60 to 70 with a resting pulse of 55 to 60. The group has helped me already seeing people surviving and thriving. The internet simply scare the hell out of you. The complications from the surgery, death, paralysis, heart attack, clots, on and on. But many of you have lived, survived and thrived. I want to live. I want to live at least in to my 80s! I am hoping I never reach 5.0, or it takes years so more advancements can be made. I have a five year old dog, and I worry that before she passes, over the next 12 or so years, that something will happen. She's a service dog and we have never been apart, as in, not more than three hours. Can you believe what we worry about? So, I see cardio June 1 for six month follow up. Probably an echo. Then in January if echo is OK, CT with contrast. That's how they caught it a few years back. I have been VERY imaged over my life time, but luckily have no real issues (Kidneys, liver, all good, no tumors, no cancers, no signs of stroke or anything from my past. You have helped me turn this around from a possible death sentence, to my plumbing needing repair so I can live a long life. After reading I feel less like it's a final Hail Mary to a major tune up to help me live out my life. THANK YOU for sharing. And I plan on reading this forum often. Now, 30 mins of lifting 10 pounds weights, then a 90 minute five mile walk/jog with my little 14 pound girl. She needs dental work June 2, and I seriously and more concerned about her anesthesia risk than any upcoming surgeries of my own! THe stats say only 85% live and thrive after TAA surgery, but guess what, I see those stats are wrong! And change with every year. So, you have given me some hope. Thank you.

    ------------------------------
    Charles Bouley
    Las Vegas NV
    ------------------------------

    Original Message


  • 25.  RE: Aortic Aneurysm Support Group

    Posted 05-10-2021 12:49

    Charles,

    Thanks for sharing your story. Stories like yours certainly make life lighter for those following you story.

    Hope you have signed up with your Local Mended Hearts Visitors group – visiting the heart patients in your hospital!

    Joe Jansen

    Ft Myers

    2007 3X bypass. Cryo-ablation2019

     




    Original Message


  • 26.  RE: Aortic Aneurysm Support Group

    Posted 05-10-2021 13:46
    Hello Charles, 
    In cases like ours and now yours, patience is key to having
    better health for the long haul.  
    My doctor told me its not my diet today, its what I put in my
    body for the last 50 years that needs to be addressed

    I had my aorta fixed almost 3 years ago, but at those
    imaging tests and stress tests they gave me, they found
    a few problems which warranted more surgery

    Doctors will only tell you what you need to know.  The human
    is very prone to jump to Disaster Mode when news like this
    is delivered.

    Stress and anxiety will not add any benefit to your life as you
    wait to find out what the next steps for you are.

    Many people will have excellent stories here to tell you.
    I hope you write often

    Mary



    Original Message


  • 27.  RE: Aortic Aneurysm Support Group

    Posted 05-10-2021 14:11
    Thanks Mr Joe, 
    I try day end and day out and try to think positive, I have my good days I have my bad days but most of all I'm still here to listen to all who are on this support group. I've Tried going to a mended hearts group but with covid they have be postponed. I do need to talk and see people like me to know it will be ok. I guess when they give you news like you have CHF some people use that as a positive way to use that a reason to fight hard and so are like me and find it debilitating I struggle to fight those demons. Hopefully o e day I can Bury those demons and live the rest of my days positive for my family. Thanks and God bless all here����

    Charles Mazur
    Texas, The Woodlands 

    Sent from my iPhone



    Original Message


  • 28.  RE: Aortic Aneurysm Support Group

    Posted 05-10-2021 15:58
    Hi Charles, 
    I am also living proof that having an AAA is not a death sentence. 
    When I first heard the diagnosis I thought of it as a ticking time bomb. I was scared and anxious at first. 
    I was given the ok to go on the Camino in Spain, if I trained for it and listened to my body. 
    So, I did. It gave me the courage to live my life again. 
    A year and a half later the aneurysm was 5.2 and open heart surgery was done.  My younger brother also has an AAA in the same place I did. It is 4.5 and they are monitoring it. I told all my sibs to get checked per my cardiologist. Two out of the five of us have one.
    The scary thing is NOT knowing you have one. We are so fortunate to know so we can get it fixed. 
    I am back to a physically active life; I finished rehab after surgery and started walking and swimming, gardening, hiking; things I love. Life is good. You will be ok. 
    Keep in touch!
    Andrea (Andie)

    Sent from my iPhone



    Original Message


  • 29.  RE: Aortic Aneurysm Support Group

    Posted 04-09-2022 09:59
    Hi Andrea
    I am scheduled for open repair of abdominal aortic aneurysm next Month,   I am terrified.  Can you tell me if you have any other medical problems, other than the AAA.    I have been reading up on open repair of AAA and and frightened of bowel problems, and blood clots etc. you must have been feeling intimidated pre-operatively ?
    I am 75 years old and my husband will be looking after me as best he can, plus my daughter but she works and I am wondering just how long til I can at least shower myself and wash my hair and maybe even cook a meal,   any information for me.
    With thanks
    Frances

    ------------------------------
    frances campbell
    VIC
    ------------------------------

    Original Message


  • 30.  RE: Aortic Aneurysm Support Group

    Posted 04-09-2022 19:24
    Hi Frances! 
    I am sorry you are in this predicament. I was shocked when I got the diagnosis. The only thing I had was mild hypertension, otherwise I was healthy. 
    My aneurysm was close to my heart so I had open heart surgery. 
    I don't know what your restrictions will be...the hardest thing was letting other people take care of me, when I was starting to feel better. It took me several months to feel close to my normal energy level. 
    It was depressing. I looked for stuff to do, to keep my mind occupied. I followed my therapy routine. I made sure I went outside and I prayed a lot!!!!
    Looking back, I can see how marvelous my body is, and how important it is not to rush the healing process. 
    I have my chest "zipper" scar to remind me how strong I am. The care and love I received during recovery ❤️‍�� is a fond memory. 
    May God bless you abundantly!
    Andrea 

    Sent from my iPhone



    Original Message


  • 31.  RE: Aortic Aneurysm Support Group

    Posted 04-09-2022 19:26
    Oops! Everyone recovers at a different pace. Your surgeon will tell you how soon you can do those things. And don't worry!!!

    Sent from my iPhone



    Original Message


  • 32.  RE: Aortic Aneurysm Support Group

    Posted 04-09-2022 19:51
    Frances,
    You're wise to reach out to others who have had similar procedures. Most important is your confidence in your cardiologist and surgeon. Second is the reputation of the medical center where you will have the procedure. Hopefully, you'll receive connections with  other patients who have had Abdominal Aortic Aneurysm repairs.  They will be the best resource to answer all your questions about post-surgery recovery.
    I've had two Ascending Aortic Aneurysm surgery's. Much of the post-surgery recovery is similar, so I'll be glad to answer your questions at fvfabry@gmail.com.
    All the best,
    Vic Fabry
    Healed Hearts of New Jersey
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 33.  RE: Aortic Aneurysm Support Group

    Posted 04-10-2022 09:46
    Hi Frances
    Heart surgery has become a very routine procedure these days. Yes there are risks, like any time you go under. The first two weeks are the toughest. Get a bench for the shower and try not to use your arms and hand much because it can really make things hurt and uncomfortable. Oh and use your pillow for getting into a standing position. It helps more than you realize it will. Good luck. You got this!
    Carrie

    Sent from my iPhone


    Original Message


  • 34.  RE: Aortic Aneurysm Support Group

    Posted 04-11-2022 06:20
    Hi Frances,

    I had my open heart surgery four years ago at the age of 67 and found that my physical recovery was almost immediate in terms of becoming self reliant for things like eating, going to the bathroom and showering (seated on a bench for starters).  I think you'll find that your recovery is swiftest at the beginning but that it will slow down as time passes.  In other words, you'll go from 0 to 75 percent surprisingly quickly, but it will take a while longer to go from 75 to 100 percent. 

    The biggest issue with post-surgical physical activity is that it's going to take between two and three months for your sternum to heal the same as it takes time for a broken bone to heal.  As a result, your doctors, nurses and a physical therapist in the hospital should teach you about "sternal restrictions" such as how to safely get out of bed, get dressed, not lift your arms overhead and not lift more than 10 pounds in the beginning.  Speaking of physical therapists, you also should enroll in a cardiac rehab program where the physical therapists will take you through a progressively more challenging exercise program while also monitoring you. Walking on your own as well as at rehab will get you into great cardiovascular shape very quickly.

    Finally, to use myself as an example, I went from barely able to stand to lifting weights at my gym and commuting to work in three months (and this was after emergency open heart surgery occasioned by a heart attack).  Of course it took more like a year before I felt fully recovered, but I was functioning at a very high level at three months.

    Good luck,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 35.  RE: Aortic Aneurysm Support Group

    Posted 04-11-2022 07:49
    Thank you to all those kind people who have answered my queries. All of the information helps, mainly because it comes from people who have actually experienced surgery - that makes a big difference. Thank you again.

    Frances


    Original Message


  • 36.  RE: Aortic Aneurysm Support Group

    Posted 04-12-2022 01:34

    Hello Everyone 
    I live in Las Vegas and I'm being monitored by my cardiologist for a 4.2 aortic aneurysm. I am terrified and want to discuss where I will go for surgery and who will do the surgery. However, my cardiologist is telling me to relax it may never reach that point. That's not calming to me, it only stresses me more.  
    Does anyone have advice on what I should do and where and who I should see. Has anyone had the surgery in my area 
    Judye Conner
    (702) 523-6289
    Las Vegas, Nv



    ------------------------------
    Judye Conner
    Retired PE Teacher
    Las Vegas NV
    ------------------------------

    Original Message


  • 37.  RE: Aortic Aneurysm Support Group

    Posted 04-12-2022 02:43
    Hi Judy
    Re your aortic aneurysm
    I had a 3,8 cm. ABDOMINAL infrarenal aortic aneurysm detected on CT in January 2020 for a totally unrelated illness. I was not informed by the physician at the hospital where the CT was performed.
    I was admitted to another hospital in January 2021 and had a further CT scan and there was the same aneurysm measuring 4.5 cm
    This year again in January, a further scan showed the aneurysm had grown to 5.1 cm. So, it is a fast growing aneurysm and has now reached a size where it needs and I will have OPEN repair.
    During all of 2021 and this part of 2022 I have done everything I could to prevent any problems - like very low blood pressure and in general, keeping as calm as I can. I have had a barrage of test this year and will have the surgery next month - and yes I am terrified. I also found, whilst doing family tree, family history that 2 uncles and 1 aunt died from this problem, all in the 1970s.

    Good luck Judy. I know how you feel.


    Original Message


  • 38.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 07:09

    Hi Judye,

    You say that you are terrified and what I really want to address is your fear.  While I have never been diagnosed with an aortic aneurysm, I am an a quintuple coronary artery bypass open heart surgery survivor who went through the wringer and who has been around this website long enough to read the stories of many aortic aneurysm survivors.  I am not a doctor but I am very well read.

    First off, your cardiologist is not crazy and the advice you describe sounds typical of the advice described by many others on this website with your condition.  Generally, surgery just is not an option unless and until an aneurysm exceeds a certain size, normally 5.0 cm or more. Since aneurysms grow at different rates of speed for different people, if your aneurysm is very slow growing, you may never need surgery.  Trust me, although people describe open heart surgery as relatively routine these days, it is not something you want to be racing to get if you don't really need it.  And, by the way, if you ever do need surgery and if you are lucky, there are some types of aneurysm that can be repaired by a minimally invasive endovascular procedure where the repair is done through threading a type of stent theough a blood vessel near the groin and there is no open surgery.

    So the bottom line is that your terror is based on your imagination of a future medical course of treatment and outcome that is far from certain and may never happen.  If you examine your life and all the things you feared in the past, how many of them actually happened and, even in cases where they did happen, how often did it happen exactly how you imagined it?  What were you worrying about and fearing before you learned about your aneurysm?  And what happened to that fear when you learned about the aneurysm?  Most of the time, life has a way of surprising us, and that is why you can train yourself to temper your fears by recognizing that they are arising out of your beliefs, which may or may not turn out to be true.

    By all means, seek a second opinion to the one you received from your cardiologist if that will make you feel better, but learning to analyze your fears and perhaps moderate them will do wonders for your state of mind and, by the way, will be good for your aneurysm.

    I hope you will soon hear from others on this site with first hand experience with your condition.

    Good luck,

    Ira



    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 39.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 13:51
    me too, me too....I have had successful open heart surgery and had the aneurysm fixed in 2019.  I did have to stay a bit longer in the nursing home because my rib cage was show to heal but now I lift and carry up to 30 pounds and have no problems.

    I think we are used to hearing negative things about a neighbors or friends surgery and get upset.

    You are special with your own body and heal time.  It really helps to accentuate more on the positive...and I can say that because I was scared too

    Good Luck, write as soon as you can

    Maey




    Original Message


  • 40.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 14:48
    Friends 
    Thank you to all of you for your reassuring, positive encouragement. It has calmed my moment of over thinking things in regard to the Aortic Aneurysm. I'm refocused and ok.

    This too shall pass and I will be healthy and happy.
    Thank You,
    Judye Conner
    Las Vegas 



    Original Message


  • 41.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 18:39
    I had mine repaired in 2019 and had avr at same time.  I updated my will made a list of passwords for spouse was convinced I would die.  That was 2019.  The only issue now I take baby aspirin and antibiotics when I go to the dentist.  Otherwise no evidence I ever had surgery.  I didn't want to cook for a few weeks after surgery( even pressing on a knife was uncomfortable)and was limited in lifting  but by 3 mos was totally functional

    Also I second what others have said it may never enlarge  so live your life and get check ups





    Original Message


  • 42.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 07:57
    Judye,
    Your understandably concerned about the aneurysm. I've had two aortic aneurysm procedures in 2007 and 2017.  IMO, your cardiologist has two missions. To diagnose your heart condition and to recommend a surgeon to correct your condition. Therefore you need complete confidence in them. If not, get a second opinion.
    A 4.2 cm aneurysm is significant so your cardiologist should have asked questions about family history, exercise and siblings health. There is a connective tissue disorder which can cause an aneurysm and your cardiologist should have examined this in your family background.  Do your research, speak to family members and proceed with logic and confidence. You can email me at fvfabry@gmail.com.
    All the best,
    Vic Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 43.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 22:28
    I've had an 4.6 thoracic aortic aneurysm since 2015. No one told me about it till 2019. My cardiologist measured it at 5.3 last August. When I went for a CT scan, it was 4.6. So I guess I'm good for now.

    ------------------------------
    Errol N
    Retired Postal Carrier
    Maui, HI
    ------------------------------

    Original Message


  • 44.  RE: Aortic Aneurysm Support Group

    Posted 04-13-2022 23:35

    Errol,

    Also important to note... surgeons often measure differently than radiologists/cardiologists. My cardiologist was once so alarmed he sent me to the surgeon, who measured it much smaller. Ultimately, I had it fixed but that was two years later. 

    Nobody can predict how fast they'll grow. Diligence is critical!

    Best,

    Herb



    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 45.  RE: Aortic Aneurysm Support Group

    Posted 04-11-2022 12:35
    Dear Frances
    please write down your questions and ask the doctors and nurses. BE Sure to write down the answers!! Constipation is not uncommon from all the pain medications but you need to take them!!!
    Drink fluids , avoid caffeine , move about as possible and ask about taking appropriate laxatives .
    You will do fine! in these times we are expecting instant gratification… but with your heart issues and surgery, recovery takes time. Thats why we are called “patients”.
    Marilyn B. Rosenhouse
    Mobile: (214)850-0655


    Original Message


  • 46.  RE: Aortic Aneurysm Support Group

    Posted 12-18-2020 19:22

    Cindy,

    Have you had surgery yet for your aneurism? How did they diagnose it? I'm a 52 year old male who is 7 weeks post-surgery from repair of an ascending aortic aneurism. So far my recovery has been going well. 



    ------------------------------
    Scott Woodward
    ------------------------------

    Original Message


  • 47.  RE: Aortic Aneurysm Support Group

    Posted 12-24-2020 11:27
    Dear Cindy , Scott , and Hank...
    You all sound more like me in that my surgery was scheduled for two months after I met the surgeon. It was the first available time. This was reassuring ( in theory, since I then believed it wasn't an emergency). However my husband is more of a worry wart. So we asked to he called if there was any cancellations. And there was, so great!!! The waiting would have caused unhealthy anxiety.
    Meanwhile, there were complications with my “routine “. mitral valve prolapse repair.
    My recovery was a miracle; however others who needed surgery but were hesitant to have their surgery because of my (once in my surgeon’s 25 years of operating) experience. complications. I tell them that I needed the surgery and ( in spite if the complications) it saved my life. : they should have their surgeries as advised, the sooner the better!!!! In September we celebrated 8 years of my post op

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655


    Original Message


  • 48.  RE: Aortic Aneurysm Support Group

    Posted 12-24-2020 13:22
    Hi Everyone!!!!
    This is Andrea (Andie ) and I had AA surgery in January of 2019. I was 63 years old. My life is back to normal, and I have to say that when I first found out I needed open heart surgery I was shocked. Waiting was a little nerve wracking at first. It was about a year and a half until I got to 5 and was approved for surgery. It is good to get it done right away; when the surgeon got in there, it was more like 6 cm. I was also very active, and back to that again. 
    I have a great cardiologist through Kaiser Permanente. They send their heart surgeries to Scripps, La Jolla. After I recovered I became a Mended Hearts visitor, and visited people at Scripps after heart surgeries. We aren't doing that anymore, due to Covid. It was a great experience to hear people's stories. 
    I wish you all the best in your recovery. 
    Andie



    Original Message


  • 49.  RE: Aortic Aneurysm Support Group

    Posted 12-26-2020 22:06
    Hi Andrea, my name is Graciela and I was part of the board at chapter 216.
    My first heart attack was in 2005.
    I will like to know if you could please shear the name of your cardiologist at Kaiser.
    My daughter is with Kaiser and she will need to be seeing by one.
    We are in Orange County.
    I will be most grateful if you could do that
    Sincerely Graciela 949 939 1989

    Sent from my iPhone


    Original Message


  • 50.  RE: Aortic Aneurysm Support Group

    Posted 01-08-2021 11:52
    Hi I hope that this time I get a text or email with  the cardiologist information

    Sent from my iPhone

    Begin forwarded message:




    Original Message


  • 51.  RE: Aortic Aneurysm Support Group

    Posted 10-22-2020 12:32
    Hey Laura! I'm 40yo and 4 weeks post-op from an ascending aortic aneurysm repair.

    To answer your questions:

    I had quasi-elective open heart surgery. My aneurism was discovered by complete accident in August. Two weeks later I saw the specialist. Two weeks after that I had my surgery. My aneurysm was 5.1 and my doc said he was fine waiting and watching or going ahead and doing it. I figured the stress of having a time bomb in my chest would do nothing for my overall health, so decided to go ahead and get it over with. Not going to say I'm back at 100%, but I feel far better than I expected to at this point. Getting winded taking a shower was exceptionally strange and I'm not sad to be past that part. My consultant told me to expect to be back to about 80% 3mo post-op.

    Death is always an option in surgery but the rates for surviving open heart surgery v surviving a ruptured aorta are what sealed the deal for me. I had surgery Monday morning and was home Friday afternoon. From the people on the cardiac floor with me, that was real fast, so I'd probably expect to be there a bit longer. Because the aneurism was in my ascending aorta, open heart was the only option. Because of COVID I can't go to rehab, but I've been walking every day and supplementing with NHS exercise videos. 

    I am off all the post-surgery drugs now (even Tylenol) but I strongly advise getting some extra strength fast release Tylenol for when you get home. Life saver. 

    Good luck with whatever decision you make and let us know how you're doing!

    ------------------------------
    Sarah Browner
    ------------------------------

    Original Message


  • 52.  RE: Aortic Aneurysm Support Group

    Posted 10-22-2020 13:21
    Hi Laura, I'm dealing with the same scenario, I'm 51, my aneurysm is 5cm, my cardiologist wants me to watch and wait every six months with a echo, I am very into exercise, it's therapeutic for me, and I have a 19-year-old and a 16-year-old, so not having stress is probably not going to be an option here. My cardiologist also put me on blood pressure medication And a statin  to take any type of stress off of the aorta, my aneurysm is on the ascending aorta, it hasn't grown since last year. 2019 in September it was 5 cm as well, I am having a hard time mentally feeling that something can go wrong, the anxiety is definitely a major problem here. Obviously the thought of open-heart surgery is extremely frightening as well, but I have spoken to several surgeons and I'm starting to feel much more comfortable with it. At my age it's a 97% success rate, Which is great numbers, any slight feeling has me walking on eggshells right now which I know I cannot continue doing, so I am definitely going to make plans for the surgery sooner than later. It would definitely be elective, but one thing I do know is it is not going to get smaller and I do not like the restrictions that I have with lifting anything heavy etc. etc. specially since I enjoy exercising so much. I think getting comfortable with a surgeon is important, I spoke to several now and each time I've gotten a better feeling. The thought of having the surgery under a distress situation, such as a dissection or a rupture is far more frightening. I guess that's the one thing you have to keep in perspective, I know this is a difficult pill to swallow I've been battling it for a month now but I am getting there. I am in South Florida, but I did get an amazing recommendation in New York, the doctors name was Derek Brinster from Northwell health, he specializes in aneurysms and was highly recommended from a fellow thoracic doctor who is very close to our family. Getting comfortable with a surgeon is the 1st step. Most of them do zoom appointments as well, it is very important to get a few opinions, anyway I completely understand the anxiety part of this, but you will get through this keep the faith and trust your instincts, I know surgery is awful thing to think about but walking around with that unknown feeling is just as bad, especially if you know it can be fixed and if the percentage rates are extremely in your favor, that helps...Most of the surgeons do zoom appointments as well, it is very important to get a few opinions, anyway I completely understand the anxiety part of this, but you will get through this, keep the faith and trust your instincts, I know surgery is awful thing to think about, but walking around with that unknown feeling is just as bad, especially if you know it can be fixed and the percentage rates are extremely in your favor.. I wish you the best on your journey, Thanks Hank

    ------------------------------
    hank Lanzo
    boca raton FL
    ------------------------------

    Original Message


  • 53.  RE: Aortic Aneurysm Support Group

    Posted 12-18-2020 19:34

    Hank,

    I'm a 52 year old male, and I know what it's like to be frightened of the surgery. I was diagnosed with a 5.1 cm ascending aortic aneurism back in March of 2018. I had put having the surgery off because I was scared of the outcome of the surgery, and how the recovery would be. So I finally had the surgery on October 30th this year. It went smoothly, and I was out of the hospital in 3 days. I'm 7 weeks post surgery today, and my recovery has gone amazingly well. I thank God for the strength he has given me during the surgery, and recovery. It does pay off to be healthy, and young at the time of surgery, and recovery. I'm glad I had finally had the surgery so that it's now behind me, and not in the forefront of my mind as it had been. It's good to know I can get back to weight training in a bit over 6 weeks. When you decide to have your surgery you should do well also being young and healthy. All the best.

    Scott Woodward



    ------------------------------
    Scott Woodward
    ------------------------------

    Original Message


  • 54.  RE: Aortic Aneurysm Support Group

    Posted 12-19-2020 00:19

    Scott I remember your name from when I had mine done .. so your finally through the other side .. awesome to read that .. Ill catch up on a few messages .. congrats !!



    ------------------------------
    Tim Purgacz
    IT Analyst
    Australia
    ------------------------------

    Original Message


  • 55.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 15:12
      |   view attached
    Hello, I am trying to post in this AAA support group I'm not sure if I've done it the right way. I was diagnosed with a 4.6 cm AAA on ultrasound at 4.8 on CT, however they said ultrasound is the most accurate measurement. This came out of nowhere, found on a CT, because I was having lower back pain. I have a pulsating in my lower left abdomen that's very bothersome and feels like a bulge, my doctor feels it and says it is the aneurysm. I am small at 5 6 and 120 pounds I have a cerebral aneurysm they have been watching for 10 years with no growth. I have high cholesterol but also high good cholesterol, so my ratio is in the middle. I have never smoked, nor do I have any evidence of heart disease. I do suffer from PVCs and have for 15 years.I had an echo in 2017 nothing was said about an AAA but my doctor said it was a basic echo of the heart and would not have shown it. I have lupus, Sjogren's, Hashimoto's and immune deficiency, and they believe I got this from my autoimmune disease and taking long-term steroids. I see a vascular surgeon in Oregon Health Sciences University, Dr. Abrams on the 22nd of this month. I have known about this for 10 days and I've cried almost every day trying to absorb what this means ~I just had my third grandchild three days after I learned this and I'm desperate to stay here as long as I can and know my grandchildren and children. Does anyone else here have the pulsating near their navel? Has anyone else got auto immune issues? I am worried it grew fast although when they look at my MRIs, they think they see changes on 2018 for sure possibly 2014 but they aren't 100% so it's been growing hopefully for a while. The thought of it growing all at once scares me very badly. I'm just looking for some hope and this has been the only place I have found by reading all of your stories and experiences it has given me some hope and I appreciate any feedback or guidance anyone can offer. Thank you.

    ------------------------------
    Mollie Carey
    Artist
    SALEM OR
    ------------------------------

    Attachment(s)

    docx
    Hello.docx   13 KB 1 version
    Original Message


  • 56.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 15:37

    Mollie,

     

    I just had surgery to replace my AAA a year ago almost exactly – 2/7/22.  I first learned about the need for this surgery 3.5 years before when I was at about 4.7 to 4.8 cm.  Initially, my cardiologist was surprised and scared the bleep out of me.  That time was very stressful until I met with the surgeon.  He put me more at ease about the size and surgery.  He suggested monitoring it with him until it grew to 5.0 or 5.1.  In the interim, I could do just about anything except heavy lifting.  I was just shy of 58 when I had the surgery last year.  For the heart facilities that do this regularly this is more routine of a surgery.  My surgeon discussed what he would do as if he was telling me about a leisurely walk in the park.  He did a great job and a year later, I feel great.  I had a prior OHS in 2001 to replace my aortic valve which was bicuspid, so now my scar is larger.  If you look at the Cleveland Clinic site, I think they list the mortality rate for this type of surgery at 1% only.  I am happy to chat further if you want but hopefully the surgeon can ease your mind somewhat like mine did.

     

    Dan O'Brien

     




    Original Message


  • 57.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 16:20
    Thank you Dan, I'm glad to hear you're doing well! It sounds like it took your aneurysm a while to grow, I fear mine is going much faster than that just from the way it looked in 2018. Have you heard of people having a pulse in their stomach? And did you have the endovascular repair? I don't see my vascular surgeon for two weeks and I'm really just kind of looking for any information I can gain at this point very worried that this grew suddenly because they didn't see it on an echo in 2017 although my doctor said they wouldn't have because it was just a regular heart echo, but from what I read people use that to keep track of an AAA so I am concerned.

    ------------------------------
    Mollie Carey
    Artist
    SALEM OR
    ------------------------------

    Original Message


  • 58.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 16:29

    Mollie,

     

    You seem to describe a descending or abdominal aortic aneurysm.  I had an ascending aortic aneurysm, so above the heart, not below the heart.  So my surgery was full open heart surgery with placement of a Dacron tube in place of my ascending aorta.  I also had my homograft aortic valve replaced, even though it may have lasted a few more years if not for the aneurysm.  

     

    Daniel E. O'Brien

    O'Brien Law LLC

    319 W. State Street, Suite 260

    Geneva, IL 60134

    630-232-2600

    dan@genevainjurylaw.com

     




    Original Message


  • 59.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 16:49

    Mollie,

    With your complex medical history, I'm reluctant to say very much but can offer my experience with heart aneurysms. In 2007, I was diagnosed with a massive aortic aneurysm that didn't appear MRI and echocardiogram just 2 years earlier. As they continue to monitor your condition, if you have any doubts about your cardiologist, surgeon or medical center, get a second opinion.  AAA surgeries have the highest success rates at larger medical centers with the most experience.  Email me if you like at fvfabry@gmail.com

    Best of luck,
    Vic Fabry 



    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 60.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 18:22

    When you say complex medical history you mean due to lupus/sjogrens.. I am told because I am small and in good health, and young I am a good candidate for either surgery. You think my autoimmune disease makes this unlikely? I read a few studies showing people with an Inflammatory, IAAA versus AAA fair the same in surgery and both groups has the same outcomes and that is what my doctors think. I am just worried about heart surgery. Do you know about autoimmune diseases causing more issues for people? I am trying to get all the info I can. Schedule with vascular surgeon, Dr Abrams of Knight Institute, at OHSU, would you go elsewhere if you were me?



    ------------------------------
    Mollie Carey
    Artist
    SALEM OR
    ------------------------------

    Original Message


  • 61.  RE: Aortic Aneurysm Support Group

    Posted 02-12-2023 23:05

    Dear Molly

    Sounds like many people have offered you specific advice.   The best being it's good to get second opinions.   This is a stressful time for you.   You may want to take an anti stress air anti anxiety medication.   Education helps, but it can also be confusing, trying to decide which information applies to you.   Please look to emotional support from family and friends.   Try relaxation techniques, meditation etc. Find out if exercise is helpful or harmful.  Is, cardio pulmonary therapy advised.  

    My condition is different than yours, but i empathize with your worries.  And good news, my surgery was 10 years ago and since then : 3 more grandchildren have been born!!!   You have an excellent future ahead ! 



    ------------------------------
    Marilyn Rosenhouse
    Dallas Tx
    ------------------------------

    Original Message


  • 62.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 16:19

    Hi Mollie,

     

    I have a bicuspid aortic valve with moderately severe regurgitation and a 4.5cm AAA. My protocol is watch and wait. I have been told by my Cleveland Clinic doctor to not lift over 20 lbs.

    Eventually I will have open heart surgery, but for me it will be closer to 4.7cm-4.8 or closer to 5 cm depending on which doctor you talk to or if my valve gets worse.

    I tell you this because I haven't gone through surgery yet and my only experience is the last three years of many doctor visits.

     

    If you begin having a lot of pain, do not hesitate to go to the ER. If you say AAA and pain, they will take you seriously and check it out. I'm not a doctor, but I just want to make sure you are taking care of yourself while you wait for that expert opinion.

     

    It's interesting, are they saying ascending aortic aneurysm or descending aortic aneurysm? I ask that because the ascending is obviously higher in the aorta and often requires open heart surgery, while the descending aortic aneurysm is lower and goes the abdomen and does not require open heart surgery

     

    My doctors have always said the CT measurement is more accurate than an echocardiogram measurement of an aneurysm. Many people with aneurysms also have connective tissue disease, so my doctor recommended for me to see a genetic Dr. Because I was only 40 when I found out with no other health conditions. One other interesting thing is once you have the surgery, and you recover and get your strength back there are no limitations. So many great people on here are doing great and living their lives. I know this will be you too. I am so thankful you found it!

     

    Please keep us posted because we have all been where you are, and we all know how scary it is.

    Beth Moon



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 63.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 23:12

    Thank you Beth, I appreciate the kind words! Is the echo you're talking about a regular echocardiogram because I had one in 2017 and my doctor said they wouldn't have seen it on that cause it was not measuring my aorta. It was just looking at my heart, blood flow and all my valves looked good except trace regurgitation on one valve. I realize it could've changed right now. I'm a little worried that this came on suddenly but he believes that it is on my MRI starting back in 2018 for sure but probably in 2015. I don't have a cardiologist ~they just found this 10 days ago, so I am very scared about when I should go to the emergency room or why they've explained the physical symptoms of a ruptured to me pretty well so I think I know. They are actually checking the size again this coming week to make sure it's not fast growing or anything. They are doing a fasting vascular ultrasound. Meet with the vascular surgeon on the 22nd of this month he is supposed to be the best person in Oregon, although after reading some post, I have thought about traveling further. Are you having your local doctor do the surgery I assume whoever you're seeing now? Does everyone have a cardiologist that has this condition?



    ------------------------------
    Mollie Carey
    Artist
    SALEM OR
    ------------------------------

    Original Message


  • 64.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2023 23:41
    Mollie,
    I'm so glad you are getting some support. I started with a specialist locally and got a second opinion later at Cleveland Clinic in Ohio. If something is emergent, I have a surgeon here, but if I have time, I will probably get the surgery done at Cleveland Clinic because statistically they have better results. They do surgeries like this all the time and are considered high volume.

    The local cardiologists, where I am at,  do not seem to know a lot about aneurysms, so I was referred to a cardiothoracic surgeon. My check ups locally are always with my cardio thoracic surgeon. 

    Every echocardiogram I have done has been after finding out about my aneurysm on a CT, so the size of my aorta has always shown up on those results. 

    It sounds like you are on the right track.

    I tried to answer all of your questions.

    Good luck and if I can help let me know.
    Sincerely,
    Beth Moon outside

    Sent from my iPhone



    Original Message


  • 65.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2023 14:41

    I  searched online and contacted several best doctors who are doing more than 50 surgeries of this kind per year. Agree with Cleveland Clinic choice - they are one of the best in America for AAA surgeries. Local cardiologist had no idea how to deal with my case. He told me that they will operate only if I get to 6cm. With my connective tissue disorder diagnosis this would be lethal. We have to go to the real specialists in this area.




    Original Message


  • 66.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2023 20:28
    Hey guys,
    I was talking to my husband, who is a nurse and he said, AAA is abdominal aortic aneurysm. I looked that up and I think he is right.
    The aneurysm closest to the heart is ATAA ascending thoracic aortic aneurysm.
    I have been saying AAA for myself and I meant ATAA.
    Is this right?
    I hope you guys are having a great week.
    Thanks,
    Beth Moon

    Sent from my iPhone


    Original Message


  • 67.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2023 11:04

    Aortic Hope is a great resource for those that have either had or perhaps will have aneurysm procedures. You can find great information on their website and/or facebook page.



    ------------------------------
    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------

    Original Message


  • 68.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2023 15:53
    Hello again,
    I called CC and they have a virtual 2nd opinion for $1800 you go over your whole history with a nurse and she pulls up all your images and has them sent to Cleveland where a doctor that she picks out according to your condition reviews. Once the surgeon  goes over all of your tests, they call you and you have a consult and they give you a plan of treatment they would do there. Then you can either go ahead and go further with a Cleveland surgeon or they said that you can take that second opinion and show it to your doctor/sugeon locally. The lady said you can get this done in 2 weeks. Has anyone done this? My AAA measured 4.6 on ultrasound, and 4.78 on CT, which modality are others using to track your growth or size?



    Original Message


  • 69.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2023 16:08

    Hello again, based on all of the experience, I've read here with Cleveland clinic I called them and they have what is called a virtual second opinion because I live in Oregon and she said it's a much faster way to get a second opinion. It is not covered by insurance and it is $1800, basically they set up an intake with you and the nurse takes down all the testing you have done or have had done and then she calls and gets those test sent to Cleveland and sets you up with the correct surgeon or doctor to read all the test and then you have a virtual appointment and they come up with a treatment plan for you. At that point you can either proceed with Cleveland clinic and the doctor that made up your plan or she said many people take that second opinion to their local doctor. Has anyone done this? My aneurysm measures 4.6 on ultrasound but 4.78 on a CAT scan. I do like that it can be done in a matter of a few weeks versus trying to get in which could take months. Any thoughts, thank you so much.



    ------------------------------
    Mollie Carey
    Artist
    SALEM OR
    ------------------------------

    Original Message


  • 70.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2023 19:13
    Mollie,
    This is a brilliant solution for patients that want a second opinion from the experts at Cleveland Clinic. The small investment provides a diagnosis from the best heart clinic in the nation (possibly best the world). Best wishes on a successful call.
    Vic Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 71.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2023 07:54
    Mollie,
    Your cardiologist is the primary medical resource for two important purposes:
    a. Diagnosis of your heart condition  
    b. Recommendation of the best specialist 
    I consider my cardiologist to be my most important medical advisor.
    Good luck,
    Vic
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 72.  RE: Aortic Aneurysm Support Group

    Posted 07-09-2019 10:58
    I had aortic root and aortic valve replacement surgery in 2015 at age 66.  What initially was thought to be a 4 cm aneurysm turned out to be 9 cm.  In my case, I was fortunate to be in very good health going into the surgery.  Over 19 months in 2012-13, I dropped 130 lbs,  At the time, I thought I was doing it in preparation for a 2013 anniversary trip to Hawaii, but it turned out to be a Godsend 2 years later.  All went well with my surgery, and I completed 13 weeks of Phase III cardiac rehab immediately after. Following Phase III rehab, I began Phase IV, which is an ongoing exercise program in the hospital rehab gym, two 2 times per week, in addition to my regular daily activity.  I've returned to a completely normal life since the surgery.  Because of elevated blood pressure at times, my doctor suggests that I not lift more than 10 lbs. per arm - as he puts it, those stitches will only stand so much pressure - but to be honest, that's not possible with my work and volunteer activities.  Thanks to all of you who have shared your experiences.

    ------------------------------
    Tom Hilgers
    Salem OR
    ------------------------------

    Original Message


  • 73.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2019 16:50
    Dear Tom and everyone who went through the OHS. I need your help. I am 50 y.o. and a year ago was diagnosed with 4cm aortic root aneurysm. In one year it has progressed to 4.4cm. I am terrified that with this speed I will have to do an elective surgery very soon. Your stories can help me to prepare myself to what to expect. Please share. Step by step. What to ask, what to expect, how did you feel at one or another point. Who was your doctor.  I am so scared that is ready to give up a surgery.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 74.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 08:36
    Hi Elena-
    First of all, I'm sorry to hear about your situation.  I have been doing a lot of research on AA and I see your in Worcester.  I am scheduled for a second opinion at Mass General in Boston.  They are top of the field and very highly rated.  Setting up the 2nd opinion is really easy.  You can do it online.  They get back to you in 48hrs.  You send your cardio's notes and CT/MRI results and they schedule you with the appropriate physician.  I hope you don't need the surgery, but if you do, you can feel confident in that they do over 250 of these surgeries a year so they are very experienced.  They, like all the major hospitals, have a full team of drs, nurses, and all different types of therapists to support you through the process.

    It is such a wonderful thing to have this support group to talk with but you should also ask the professionals all of your questions and they can guide you based on your unique circumstances.  I know it is scary, but there is power in knowledge.  Ironically, and very sadly, my husband is at a funeral today for the paraprofessional in his classroom who just passed away from this.  We may be unlucky to have AA, but we are lucky to know about it and be able to be empowered to learn and make our own choices. 
    Best of luck to you!   Michelle  



    Original Message


  • 75.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 19:39
    I'm sorry to hear about your situation. Bear in mind, that you are lucky to know about it. This gives you the upper hand, as scary as it is. Now you are in control.  It's better to know and plan an elective surgery than to have a rupture and a race against time and hope you are close to a facility that can handle it.   Keep the faith. You will do fine and you will be the next member to reassure a future patient.  Keep us posted. You have a lot of people cheering you on. 
    Annette Smith.

    ------------------------------
    annette smith
    saxonburg PA
    ------------------------------

    Original Message


  • 76.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 12:39
    Hello Elena,
    All of us that have had heart surgery have had different reactions at different times. I can only speak for myself and say no matter what the tests say, stay positive! Finding these things early is always better than finding them late. 
    Everyone I have ever talked to about their medical status that has had a positive attitude got thru it faster and easier than those folks that feared everything. Try and find the positive side of all the tests. Use those feelings to guide your healing process. 
    Some folks said it was their faith in God, others said it was their sense of humor, one lady even told me it was dumb luck that led to her having surgery and saving her life and all she could do was smile and be happy about that.
    If you use the information you receive from your doctors and other sources to learn more about your condition it will not seem so scary. 
    All of us on this forum are here for you as well. You are not alone and you can ask any question at any time. If we can help resolve concerns early they don't grow into major fears later. ☺
    Take care and keep us posted.

    Richard Short
    Chapter 395



    Original Message


  • 77.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2019 20:10
    Dear Michelle and Richard. Thank you for your feedback! It really helps to know that I am not alone in this world with this issue. Last week I contacted Cleveland Clinic. I am sending them all my medical records and images now. Seems this clinic is the best in the field. I have a root aneurysm which is not easy to fix. Life is turned upside down in one day.  So sad... I was buttling severe pain for 2 long years previously and it took me years to get better. I dont know if I have  stamina to go though the pain again. You are right about positive thinking, but where can I get it from now? Everything is blick now. Do not know how to accept this diagnosis and move forward with it. It is funny, but I am afraid of pain and being crooked more that to be dead. Weird.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 78.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 10:01
    Hi Elena,
    My situation is a bit different, but I am facing OHS tomorrow for the second time in less than 6 years.  They will be replacing my St Jude aortic valve with another valve and fix my aortic root.  My "numbers" doubled from January to August, so this surgery came up pretty fast.  Second opinions are always a good idea for your ease of mind and decision to move ahead with surgery.  Fear does not allow you to move forward if you stay behind it.  Make the decision to Do it Scared anyway - move forward and look forward to your life when the pain subsides.  It will!  These things are temporary challenges in life for there are many great memories to be made with loved ones, friends and beautiful strangers you have not encountered yet!  Reach out to family and friends and ask for prayers and support.  Knowing others are rooting for you is incredibly uplifting!
    Cheers!




    Original Message


  • 79.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 11:10
    Hi Rani,

    Thank you so much for your post! You are so brave and wise.  My thoughts and prayers are with you. I wish you a full and fast recovery.  It is too bad you have to have another OHS. I am wondering why though? Something was not done right during the first OHS?  Please let me know at what hospital you are and if you need any help. I am willing to help with whatever I can. My hugs and prayers. I hope all will go well tomorrow.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 80.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 12:18
    Hi Elena,
    Surgery went well for my aortic valve replacement round two.  Nothing was wrong with my previous surgery.  My body just attacked the valve and I had quite a build up of scar tissue.  I am pretty young with a great immune system so I guess my body beat up the new valve.  

    The second aortic valve became stenotic and had to be replaced.  I am in the 2% of this kind of thing.  Alas. Good news is the replacement surgery was successful.  I have a bigger valve this time which should help in the future and potential TAVR next round.  Pain is manageable with medication.  Not fun, but diminishing each day.  The lesson learned from last time is get a recliner.  I have one this time and it is incredibly helpful!  Walking also helps a great deal.  Movement is great medicine!   

    You are not alone in your situation.  This forum is a really good source of support as well as a local Mended Hearts group if you can find one.
    Best of luck!



    Original Message


  • 81.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 16:14
    Hi Rani,

    Glad your surgery went well! Fast and full recovery!  I am looking for a recliner too. Everyone said it will be my best friend after the surgery. As well as the little pillow.

    I talked  with several people from Mended hearts over the phone. So helpful!  Thank you Rani  for your posts and positivity too. 

    I know hugs hurt now so I am sending you my virtual hug. ❤

    Get better soon,
    Best,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 82.  RE: Aortic Aneurysm Support Group

    Posted 10-06-2019 12:04
    Dear Elena:  Just wanted to drop you a note of thanks for sharing your experience.  I have been followed for bicuspid aortic valve for almost 40 years, which I understand is very rare to know for so long..  Pretty much ignored it other than annual cardiology appointment and imaging.  Starting about 18m ago, my aneurysm started growing steadily - and my cardiologist referred me for surgery a couple months ago.  I am scheduled for valve replacement and aneurysm repair at Cleveland Clinic late this year.  I was shocked at how quickly this progressed, I have been pretty ignorant about this disease, and the surgery, until now.  All I know to do know is to press through it and try to make this process as easy on the family as possible.  I'm sure it won't be enjoyable.  My thoughts are with you!  Happy to trade experiences as we go down this road.  Regards,  Keith

    ------------------------------
    Keith Binka
    TX
    ------------------------------

    Original Message


  • 83.  RE: Aortic Aneurysm Support Group

    Posted 10-06-2019 12:30
    Hi Keith,

    Who is your surgeon at Cleveland Clinic? Mine is Dr. Svensson. I am also looking at a possibility of PEARS procedure in London as I do not have a valve issue (at least for now). Sent all my images to both places and awaiting for an appointments (or phone calls) from both doctors.
    The elective surgery is much better than an alternative so will keep our fingers crossed. 
    Best,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 84.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 16:41
    Dear Elena,
    You seem to be looking for something to be going wrong. Some of us have to have several surgeries because things are going right. Problems are being caught and fixed. The body is not a statue that just sits there. We catch colds and sometimes that leads to the flu and sometimes that leads to pneumonia. But mostly it is just a cold.
    You said you were looking for something to be positive about. I look ad my Granddaughter and I get happy. I choose to be happy and try to look for the positive outlook of every problem. 
    You can think about the next birthday for a child, you can think about the big giant lobster dinner you are going to spoil yourself with as soon as you can. Look for good things and you will find them. Look for bad things and they will find you. We are all looking forward to our futures. We have all been given second chances. Enjoy 

    Richard Short 
    Chapter 395



    Original Message


  • 85.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2019 17:06
    Hi  Richard,

    It is hard to stay too positive with my past experience of an extreme and   excruciating pain for a long period of time (pretty much what cancer patient stage 4 have - this is what my doctor said).  With  unknown diagnosis. And when I just got better and start enjoying life - I am diagnosed with this.  I really admire your attitude. Hope to get there some how.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 86.  RE: Aortic Aneurysm Support Group

    Posted 09-25-2019 09:35
    Hi Elena!
    i am seven months recovered from a thoracic aortic aneurysm. I feel much stronger physically and emotionally as a result of going through this experience. It can be scary when you think about the procedure and recovery.

    A friend gave me a cd called Guided Meditations for Successful Surgery by Belleruth Naparstek. I listened to it before and after surgery. I also asked for support and prayers from everyone I knew. I found love and support from my co workers and felt surrounded by love. 

    You are strong and you can do this! You have a network of support, with Mended Hearts, who are living proof of recovery and full lives post surgery.Keep in touch! 
    Andrea

    ------------------------------
    Andrea Broding
    School Psychologist Retired
    Santee CA
    ------------------------------

    Original Message


  • 87.  RE: Aortic Aneurysm Support Group

    Posted 09-12-2019 17:46
    Hi Vic-
    I'm 52 and in otherwise great health but was just diagnosed with thoracic aortic aneurysm at 4.2 cm.  I'm going to have another scan in 6 months to see if it is growing and how quickly.  Hopefully it isn't .  It's been really scary to learn about all of this on the internet.  The surgeon I met with was very upbeat and encouraging but it's so daunting to think about open chest surgery.  You look so awesome post surgery so you're definitely helping me feel better about that possibility!  I don't have any of the factors that are typical of causing this condition although I haven't had genetic testing yet.  No one in my family passed early but my uncle did have an aneurysm in his brain so I guess it's possible.  I'm definitely worried for my children and grandson so I'll have it done.  Sounds like you were at a great hospital and doing well.  I'm hoping to find a support group near me and it looks like there is a Mended Hearts close by so I've reached out to them.  Thanks so much for sharing your story!!  Best of health in recovery-  Michelle

    ------------------------------
    Michelle Pratt
    SOUTHWICK MA
    ------------------------------

    Original Message


  • 88.  RE: Aortic Aneurysm Support Group

    Posted 09-13-2019 06:22
    Michelle,
    It has been over two years since my open heart surgery to correct an aortic arch aneurysm at New York Presbyterian Medical Center. Here are a few observations from my experience and a recommendation about your medical condition. 
    You are using the correct procedure by following up with your cardiologist for a echocardiogram and/or CT scan every six months.
    a. The first job of a cardiologist is to diagnose your condition and the second job is to identify the best cardiac surgeon for your condition. You must have complete confidence in his or his abilities.
    b. If and when aortic aneurysm surgery is necessary, your cardiology should identify the best surgeon available, at the best medical center.  
    c. Research has found that a connective tissue disorder is a genetic link which increases a patients risk of an aneurysm.

    I'm heading to the Summit Y for exercise, so please excuse the short message. You can email me directly at fvfabry@gmail.com
    Best regards,
    Victor Fabry, President
    Mended Hearts of Morris County

    ------------------------------
    Victor Fabry, President
    Mended Hearts of Morris County
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 89.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:02
    Michelle, I am sorry to hear about your aneurysm. I am 51 and mine was accidentally found after a CT scan I had because of an attack. I have a 5.4 ascending thoracic aortic aneurysm. I am at a loss on what I need to do. Surgeon said that it could be because of a bicuspid valve but I have No symptoms and no other health issues. Surgeon does not want to do surgery. He said he cant tell me what I should do, its up to me. If my valve is bicuspid then I am in the range for surgery and if its not we can wait until it reaches a 6.0. I asked if we can do a TEE to find out if my valve is bicuspid. His reaction was " If your goal is to get surgery sure'. I am so lost and don't know what I should do. I told him my goal is not to get surgery but to live... any advice is greatly appreciated.

    ------------------------------
    Ileen Cattani
    Education
    Roseville CA
    ------------------------------

    Original Message


  • 90.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:42
    My experience with an ascending aortic aneurysm was that the condition was stable for a period but then expanded within a year. Schedule a regular consult with your cardiologist. They should recommend a periodic echocardiogram and CTA scan to watch the condition of your aneurysm.  If and when it's required, your cardiologist will be your advocate in recommending the best thoracic surgeon and Medical Center.

    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 91.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 10:56
    Hello Vic and everybody-- I'm glad I found this site. My history: I had what they believe was a coronary artery spasm in 2012 (along with several ocular migraines). Cardiac cath was clean. Cardizem started and I haven't had another episode or spasm or ocular migraine. 2 weeks ago, I saw my cardiologist for my 6 month check up. While looking through my chart, he said, "Your aortic aneurysm is still small". I almost fell off the exam table and said "My aortic aneurysm????".  He said not to worry, it was small, and that we had discussed it before. I said this was the first I was hearing about it. I'm a retired nurse and I would know if a doctor said anything about my aorta. I was so stunned I couldn't question him more about it. He told me I would start having echos every 6 months instead of every year. He did not tell me any other things to do about it. He did encourage me to keep up with my exercise at the gym and work on losing weight.  I obtained my past echo reports and found the dilatation (I'm reading that's another term for aneurysm) of my aortic root and ascending aorta first mentioned in April 2018 with increase in size noted on April 2019 test. I have my next echo this month. I am so upset about this, that a change was noted 18+ months ago and I was not notified. Why wasn't another echo ordered for Oct 2018 if a change was noted in April 2018. I have history of anxiety and it is ramped up now.  My medical doctor looked at my reports and did have concern about one measurement and gave me the name of a thoracic surgeon to consult with. I'm going to attend a local cardiac support group next week to help me deal with this. Thanks for listening.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------

    Original Message


  • 92.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 11:51
    Betsy-  This is just staggering to hear that your Dr. knew and said nothing.  My dr. also referred me to a cardiac surgeon but didn't tell me about the aneurysm.  The para in my husband's classroom also had the same experience with her dr. not telling her and she had lost her mother to it!   I am so shocked that these are not discussed immediately.  FYI, depending on size of your AA, most medical professionals recommending not straining by lifting very heavy things (over 40 lbs)or shoveling snow due to the stress it could put on the AA.  Please keep up posted and take advantage of all that can be offered for your treatment, including counseling.  This could be very challenging for for people even without mental health concerns and we have to take are of ourselves in mind, body and spirit!  So glad you are a part of what I am learning is a fantastic support group!  - Michelle



    Original Message


  • 93.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:29
    Thanks Michelle for your support. I believe the past few days since being told of my problem have been of shock, denial, and anger. I am now ready to focus on the next steps on how to deal with this. Your helpful comments about snow shoveling and limit of pounds to lift are something I should have been told by the doctor. Thankfully, there wasn't enough snow last winter so I didn't jeopardize myself shoveling. Again, I'm glad I found this group.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------

    Original Message


  • 94.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2019 15:04
    Hi Betsy,

    I can relate. My aortic root was 4 cm last year and Dr. said that there is nothing to worry about as this is my "biology" and nothing needs to be dones. No CT scan, no siggestion to check my relatives. This year ECHO showed 4.4. I guess it is not my "biology" then. I transferred to another cardiologist. Just had  my CT today. My kids , sister and mom will be checked too. I learned that we will need to be our advocates. You cannot trust doctors blindly.

    Wish you the best , Betsy. Hope we all will be well.
    Sincerely,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 95.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:37
    Hi Elena- Thanks for your response. My doctor, after telling me that I had this problem, never said a word about what to do other than echos every 6 months. I was stunned, so I couldn't think of what to say. I've notified those family members that need to be checked. I'll make appointment to see cardiothoracic surgeon for a consult.  It's definitely a time to be in charge of ourselves and not depend on the doctors. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------

    Original Message


  • 96.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 16:53
    Hi Betsy,

    I understand you completely. Read my previous posts and you will see that I was in total shock myself  when I learned not only that  I have an aneurysm, but also that it is growing rapidly. Dr. told me nothing a year ago. This group is great. I talked to several people over the phone and it made a big difference.  My first CT is done yesterday, will see my new cardiologist in a week and already contacted two surgeons. We are aware about our issue and it gives us an advantage. I am not doing any heavy lifting and control my heart rate. Something I have never thought /done before. My family will get checked. I have time to prepare myself for the surgery physically and mentally. Please let me know if you want to talk. We are in the same boat.
    Best Regards,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 97.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 14:13
    Elena, are they going to just watch it at a 4.4? I have a 5.4 and I was told they will monitor it yearly. I am freaking out

    ------------------------------
    Ileen Cattani
    Education
    Roseville CA
    ------------------------------

    Original Message


  • 98.  RE: Aortic Aneurysm Support Group

    Posted 10-30-2019 19:46
    Hi Ileen,

    Sorry you have to deal with this diagnosis as well.  You can see from my posts here that I was really upset when I learned about my aneurysm. It will get better, believe me.  My size is only 4.4cm so I am not a candidate for a surgery yet. However, I would be really concerned if I have 5.4cm and a bicuspid valve. I have done some online research and have to say I would not trust your cardiologist if he suggests to wait until 6cm when you have a bicuspid valve.  I would contact a reputable surgeon who operates on aneurysms and ask about his opinion. If you have a good insurance I would recommend Cleveland Clinic. I personally contacted Dr. Svensson and sent him my medical records and CT scan and ECHOs. Elective surgery is much better than dissection or rupture and we are lucky to find out about our aneurysms. With the surgery we have another chance. I know what you are going through right now and how difficult it is to accept. Feel free to contact me any time. I will share with you what  I learned. Hugs

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 99.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 19:30
    I have a 4.3 aneurysm in the aortic arch. It was found during a routine chest X-ray. I went to a cardiologist the following day and brought him my Echo's that were done just as a matter of screening.,I have no symptoms and no co morbidities like high blood pressure, high cholesterol or diabetes. Dr told me this type is rare and there's usually family history.  Btw I am 69 years old. I immediately sent my parents 85 and 87 and my siblings and everyone has normal aortas. Duh! Why me? In 2005 my aortic arch measured 3.5. In 2009 it was 3.7. Growing slowly. From 2009-2019 it went from 3.7-4.1. Growing still but slow. I also have a tricuspid valve which he said Thank God to. He said he would see me in 6 mos which will be on Nov 18. Meanwhile I'm slowly freaking out. I spent weeks doing research and made an appointment at NYU's aneurysm dept. armed with all my info. They recommended the dr and when I got there he said I've done thousands of aneurysm repairs but I won't touch this one. If you came in as an emergency and I was the only one available that would be a diff story. I'm sending you to the expert here at NYU. All he does is ascending aortic arch aneurysms. I am seeing him in March and he will do a CT scan with contrast, unless of course the echo in 2 weeks shows something. He explained that he only does open chest procedure. They do not do fenestrated stents at NYU. His reason was better outcome. so I asked why I have to sit on a ticking time bomb. Why not do it now while I'm healthy with no symptoms. He said, he might be doing a surgery that may have never been necessary. He didn't want to do it because it's risky and I gave an active life and my quality of life would change dramatically. Ok, go home and research some more. Well back in Sept I got very sudden, excruciating pain in my ears and throat spasms and then just as suddenly the same pain between end of sternum and belly button. I thought I was dying. It took about 20 mins to go away. I know women's heart attacks present very differently from men and I was convinced this was cardiac related.  Back I went to cardiologist. He said those were very bizarre incidents but did an EKG just in case. He took the 5 EKGs I brought him and placed one on top of the other and the teachings were 100% identical. You did not have a heart attach he proclaimed. I don't know what you had. Then I told him about the cardio-thoracic surgeons approach to my aneurysm if I ever get to surgery. He took my hand and said, "this is your decision entirely about how to proceed. But please, if surgery is necessary I want you to go to either Mt Sinai or Lenox Hill. My colleague is an expert in fenestrated stents. His success rate is high. Please don't do an open procedure if you have a choice"  I so appreciated his honesty and his compassion. He is so concerned about my quality of life. 
    'I try not to think about it but it consumes my every waking moment and disrupts my sleep. I still have a college student at home. My very brave young man who underwent elective bilateral above knee amputations because his legs didn't grow from the knees Disney and he was in excruciating pain. I adopted him when he was 6 from south Africa.  He still needs his mama. And I take care of my mama who lives with me and our 5 cats. I worry more about them than the people. And then there's my 2 1/2 year old granddaughter. I've still got a lot of living to do.
    i have a question. Has anyone had their aneurysm repaired using the fenestrated stent procedure? I'm sorry this was so long. I'm so overwhelmed. I'm anxious to hear from others. Thank you and be blessed

    ------------------------------
    Laura Calamuci
    Teacher
    retired
    Staten Island NY
    ------------------------------

    Original Message


  • 100.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 10:04

                  Hello. Betsy,

                  I understand your upset at not being told when the problem with your aorta was first noticed. My impression is you aren't seeking information so much as the opportunity to express your feelings. This is a good place for that and your support group should also be one.

                  I don't know if this will help but, as a former personal injury attorney, I couldn't help looking at your situation as one. Assuming that the doctors were negligent ("wrong") in not telling you, the question is did you suffer any damage. You may be personally upset by their conduct but did it cause you any other harm? Is your condition worse? Should any different action have been taken which would have improved your result? It doesn't seem so, since the course of treatment seems to be still to watch and wait. Maybe your next consultation will change this – but let's hope not. I hope these comments won't add to your frustration. Yes, you may have been treated shabbily, but if you can shift your focus to the fact you haven't been harmed, you may be able to move on more easily.

    Keep punching,

    Bob Levin

     

    Sent from Mail for Windows 10

     




    Original Message


  • 101.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:44
    Thank you Bob for writing to me. I am better now and able to focus on the future. My doctor put me into shock with the news and I thought it was all a big error, until I got the reports myself.  I will see a surgeon for a consult and hopefully everything is "small and not to worry" as my cardiologist said.  As a friend told me, she gets a copy of every test result to review herself. I'll do that going forward. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------

    Original Message


  • 102.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 11:01
    Ira and Betsy,

    I agree with Ira. We are all unique persons created with a mix of parental genes that is illustrated by each of us having our own DNA. Even in my 70's my doctor keeps telling me that for things like my hernia I can thank my mother, as I also can for still having hair.
    I use my background of teaching statistics at U. of Tennessee for my example. My theory is that at birth our genes provide for a natural life expectancy expressed in a range of years rather than a specific age. For example, assume mine was between 70-90 years. Where between these dates is influenced by my behavior. The primary behavior drivers are diet and exercise, with stress also playing a major role. 

    My 50 years of studying statistics supports this theory. For example, a study showed that when Japanese moved from Japan to San Francisco, their health profile changed to reflect the ones of San Francisco. All this assumes, of course, no interring actions, such as wars or smoking. 

    Betsy, my theory developed while practicing law for 30 years, is that professionals care and will, generally, try to accommodate the wishes of the clients/patients. May clients/patients only want to "worry" about something that has reached the crisis level. I am not one of them. I want to know about any potential problems so I can take preventive action. I repeatedly inform my physicians of my wishes by specifically, politely, stating them and studying and discussing my test results. Their reactions initially are surprise, followed by willing participation. I suggest you follow this approach and, if the physician is not cooperative, consider interviewing others until finding one that is. All too ofter the focus, by doctors patients and lawyers, is on treating crisis rather than preventing it.

    I learned many lessons the hard way as my cardiologist did not advise me of any blockages until after my heart stopped. The lessons I learned about taking responsibility for myself. My learning experiences are contained in my book "One Heart-Two Lives: Managing Your Rehabilitation Program WELL" and my background at http://www.OneHeartTwoLivescom.word press.com.

    Brent Zepke    



    Original Message


  • 103.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 13:51
    Thanks Brent for your thoughts. My doctor said we discussed the aneurysm before, so he was trying to cover himself when I said I didn't know what he was talking about. He messed up.  Going forward, I'll need to get my reports to review myself. I'll keep your book in mind to take a look at it at some point. Thanks.

    ------------------------------
    Betsy C.
    N.Y.
    ------------------------------

    Original Message


  • 104.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2019 15:36
    Hi Brent,

    Love your post! Cannot say better - "I want to know about any potential problems so I can take preventive action". 
    If you are aware of your aneurysm, you are not just waiting and watching, you are doing a lot of things differently.
    Thank you for the link to your book!
    Best 
    Elena



    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 105.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 18:04
    I am 52 years old and just diagnosed today with an aortic aneurysm when I went to the hospital for chest pains.  They said it was small but that I needed to see a cardiologist tomorrow.  What should I be asking?

    ------------------------------
    Andrea Henderson
    Little Rock AR
    ------------------------------

    Original Message


  • 106.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 19:26
    Andrea,
    The right cardiologist will diagnosis  your condition and if required, be your advocate to the best cardiac surgeon. 
    a. What is the condition of my heart?
    b. What are the alternatives to surgery?
    c. What surgeon do you recommend?
    d. What hospital do you recommend?
    e. How soon will I need surgery?
    f.  How long will my recovery be?
    ATB,
    Victor Fabry

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 107.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 20:07
    Hi Andrea,

    I would ask the following questions:
    1.  Location of my aneurysm ( root, arch, thorasic or abdominal)?
    2. What is the size of my aneurysm (if no CT, please ask dr. to order a CT with contrast)
    3. If dialiation is more than 4cm, start searching for the surgeon. 
    4. Ask your cardiologist how often you will be checked for the aneurysm's status (depends on size - annually, every 6 months, etc.). 
    5. If you have any family history of aneurysm, ask your dr. to refer you to genetic specialist. You can have a connective tissue disorder. In this case the surgery will be needed at a smaller size (4.5-5 cm vs. 5.5cm) and all family members will need to be checked. 
    6. I would ask your cardiologist about his/her recommendations and see if you can trust him/her.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 108.  RE: Aortic Aneurysm Support Group

    Posted 11-05-2019 21:15
    Hi Andrea-
    Try not to get ahead of yourself just yet.  See what they have to say tomorrow (bring a pad and a friend or relative if possible to take notes) and remember that most insurance plans allow for second opinions.  Vic has a great list, but first of all you want to know how large it is.  If this is your first test that has shown the AA, it's a "baseline" for you.  The dr. will then recommend how soon to check it again.  What caused it (hereditary, high blood pressure, bicuspid valve, etc) will play into the progression, or lack thereof if that can be determined.  Some people's are small and don't grow much and they never need surgery.  Others may grow more quickly and surgery will be indicated.  The formula the dr's use is one that shows that when the risk of dissection or rupture outweighs the risk of surgery, then surgery is recommended.  This is a situation where size does matter.  

    In the meantime, two important things to know are to avoid lifting or exerting doing anything you can't easily talk through  while doing.  Exercise is very good for you if your AA is small (power walk, jogging, light weight lifting)  but not straining (heavy snow shoveling, crossfit, etc).  Also, know the signs of what a dissection feels like (extreme sharp stabbing pain in chest, neck, shoulder) and call 911 immediately.  Tell responders you have AA ad need CT scan as soon as you get to med facility.  If that does happen, you have a very good chance of survival if you are treated in the first 4-5 hrs.  Make sure your family, co-workers, friends know your condition once you have the info and that you have support and people to talk to.  

    This is a great group and lots of experience and knowledge are here.  You should also look things up on very reputable sites yourself (Mayo Clinic, Cleveland Clinic, and of course, talk to your doctors.  

    Take care, good luck and try to remember.... you're lucky that this was found and you can do something about it.  

       



    Original Message


  • 109.  RE: Aortic Aneurysm Support Group

    Posted 11-06-2019 10:18
    I was surprised to read here that AA surgeries are not as common as The Open Heart Surgeries for 
    valve replacements and the like

    I had no symptoms at all my whole life....Not a chest pain, not a quiver, Surgeon said he thinks
    I could have been born with the AA and told me that starting that day I was on Light Duty until
    he performed the surgery

    Had surgery in August of this year, had the surgery twice because my lungs filled with blood and
    they had to open me up again a day after the surgery...

    Have been home since September and there was never any pain associated with my Open Heart
    Surgery except for chest muscle pain once the tissues started waking up after leaving the
    hospital.

    Did 5 sessions of Cardiac Rehab but had to drop out because I fractured my Sternum
    while I was in the Hospital and only noticed it when I started lifting 20 pounds and am on
    light duty now until April or May because of Osteoporosis and the slow healing that goes along
    with that

    M

    ------------------------------
    mary hedtke
    ------------------------------

    Original Message


  • 110.  RE: Aortic Aneurysm Support Group

    Posted 11-06-2019 13:44
    Mary, Andrea and others,

    Your discussions raised a point I realized as I walked alone on a beach during my rehab from a quintuple bypass. 
    Carry your cell phone with your medical team easily accessible.
    It is important to carry with you easily accessible information about your situation just in case you are unable to communicate to medical professionals.
    Your various physicians names and telephone numbers, your medicines and any restrictions you are aware of. 
    You may want to carry a regular strength, un-coated aspirin or two.

    When I progressed to jogging, in only shorts and shirt, my daughter gave me a metal plate to put on my shoes with key info.

    I never needed to use the emergency stuff but the peace of mind was worth twenty times the effort.

    I should mention that my wife and I each carry the key data for both of us.

    Brent Zepke
       



    Original Message


  • 111.  RE: Aortic Aneurysm Support Group

    Posted 11-21-2019 09:15
    Victor,

    I was diagnosed with a 5.0 cm aneurism on my ascending aorta that I will need surgery for around the beginning of January.
    Do you have any encouraging words for me going into this surgery, and as far as recovery afterwards? For me, my faith
    in God, my good health, and prayers from others is what is going to get me through it.  ​

    ------------------------------
    Scott Woodward
    QA Assistant
    Northrop Grumman
    San Ramon CA
    ------------------------------

    Original Message


  • 112.  RE: Aortic Aneurysm Support Group

    Posted 11-21-2019 09:45
    Scott,
    You were fortunate to be diagnosed early and planning to have surgery in January.  The in-hospital post surgery care is as important as your surgeon. 
    Walk as often as possible in-hospital and when you're back home, as your strength increases, expand your daily walking exercise. After six weeks, enroll in a Cardiac Rehab program at a nearby hospital.  After Rehab, you should continue aerobic exercise at least 30 minutes a day, 5 days per week.
    Good luck,
    Vic Fabry
    2007 Aortic Aneurysm Surgery at MMC
    2017 Aortic Arch Surgery at NYP

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 113.  RE: Aortic Aneurysm Support Group

    Posted 11-24-2019 01:26

    My name is Dallas Gutierrez and I had an aortic aneurysm of 6cm removed and my aortic valve replaced on October 30. I am 36 and currently in cardio rehab. 



    ------------------------------
    Dallas Gutierrez
    Teacher
    plano TX
    ------------------------------

    Original Message


  • 114.  RE: Aortic Aneurysm Support Group

    Posted 11-24-2019 06:05
    Dallas,
    You are a lucky person to be diagnosed and surgically repaired at such a relatively young age. An Aortic aneurysm is typically caused by high blood pressure, physical stress or a congenital defect or a combination of all three.  Your cardiologist should determine the likely cause and prescribe medications, stress reduction activities and an exercise program that will reduce the chance of a reoccurrence. Good luck and Happy Thanksgiving,
    Vic Fabry


    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 115.  RE: Aortic Aneurysm Support Group

    Posted 11-25-2019 11:29
    Hi Vic,

    My name is Brian Tinsley and I am 57 years of age. I am due to have my angiogram this Wednesday and then hopefully my aortic valve, aortic root, replacing of my old dacron (repaired from Aortic Dissection) 16.5 years ago and this "We have discussed the benefit of axillary versus femoral retrograde perfusion cannulation in this situation. If cerebral oximetry or pressures are at all involved, we can augment this with central cannulation to enhance body and cerebral perfusion. While undergoing deep hypothermic circulatory arrest, we will dissect the heavily calcified graft from the adjacent pulmonary artery and superior vena cava, and at least initiate the Bentall."

    I honestly never thought I would have to have another Open Heart Surgery again, but I have slowed down tremendously and my lying down flat for long periods causes me to wake up as I feel shortness of breath. I have my LazyBoy next to my bed now and most nights sleep in that for a while. 

    I started my website, www.aorticdissection.com 16 years ago and now will be going to the next phase of the site about my own personal experience. I am leaning towards the new Edwards Resillia Inspiria (sp) valve that has the new coating on it that enables it to NOT get calcified so quickly. I am not interested in a mechanical one, just too much stress for me. 

    I am hoping that once repaired I can get back out on the tennis court and my tennis leagues and playing competitive tennis again soon. I am thinking I will be out of work, 4-6 weeks. I honestly can't remember how long I took off last time 16.5 years ago.

    I appreciate your support VIc!
    Brian :)

    ------------------------------
    Brian tinsley
    sales engineer
    Comcast
    Everett WA
    ------------------------------

    Original Message


  • 116.  RE: Aortic Aneurysm Support Group

    Posted 11-25-2019 14:00
    Brian,
    You have an incredible history as 16 year survivor of open heart surgery to repair an aortic dissection.  I have survived two open heart procedures;
    In 2007, I had  a Bentall procedure at Morristown Medical Center which included an Edwards Perimount valve. In 2017, I had a second surgery at NYP to repair an aortic arch aneurysm. The surgeon said the valve was fine and didn't need replacement.  Since I'm over seventy, my 12 year old the edwards valve will replaced by a TAVR valve when required.  Your original valve lasted over 16 years and that's better than the average lifespan for a biologic valve. Your heart surgeon will recommend the best replacement based on your age, health and activity level.  Congratulations on your tennis game. When I turned 60, I  gave up tennis and now I workout 6 days a week at our local YMCA .  30 minutes on the Arc trainer or stationary bike plus speed bug and 4 cybex machines. 
    I checked your www.aorticdisesstion.com website and I'm very impressed.  You should consider expanding the scope to include Ascending Aortic Aneurysm patients, as well as aortic dissection patients. Good luck with the surgery and recovery.  Happy Thanksgiving to you and your family.
    Best Regards,
    Vic Fabry

    My name is Brian Tinsley and I am 57 years of age. I am due to have my angiogram this Wednesday and then hopefully my aortic valve, aortic root, replacing of my old dacron (repaired from Aortic Dissection) 16.5 years ago and this "We have discussed the benefit of axillary versus femoral retrograde perfusion cannulation in this situation. If cerebral oximetry or pressures are at all involved, we can augment this with central cannulation to enhance body and cerebral perfusion. While undergoing deep hypothermic circulatory arrest, we will dissect the heavily calcified graft from the adjacent pulmonary artery and superior vena cava, and at least initiate the Bentall."

    I honestly never thought I would have to have another Open Heart Surgery again, but I have slowed down tremendously and my lying down flat for long periods causes me to wake up as I feel shortness of breath. I have my LazyBoy next to my bed now and most nights sleep in that for a while. 

    I started my website, www.aorticdissection.com 16 years ago and now will be going to the next phase of the site about my own personal experience. I am leaning towards the new Edwards Resillia Inspiria (sp) valve that has the new coating on it that enables it to NOT get calcified so quickly. I am not interested in a mechanical one, just too much stress for me. 

    I am hoping that once repaired I can get back out on the tennis court and my tennis leagues and playing competitive tennis again soon. I am thinking I will be out of work, 4-6 weeks. I honestly can't remember how long I took off last time 16.5 years ago.

    I appreciate your support VIc!
    Brian :)


    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 117.  RE: Aortic Aneurysm Support Group

    Posted 11-25-2019 14:22
    Thanks so much... My site is about AorticDissection, but any story can be submitted. 
    6 days a week!!!!!! Wow........... Impressive to say the least!!

    I have an angiogram this Wednesday and hopefully everything will check out to move forward with my surgery on the 19th. 

    I am looking at replacing my native valve of 57 years severely leaking with the Edwards new one. The one that is Edwards Resilla Inspiria one. 

    I just want to be able to wake up from the surgery, be able to be home by Christmas. That will be the best Christmas present ever and most of all see my wife and 2 kids, plus all my family and friends.

    God bless Vic... let's stay in touch!! Brian 206 200 4917



    Original Message


  • 118.  RE: Aortic Aneurysm Support Group

    Posted 11-25-2019 17:25
    Brian,
    The support of your wife and family will get you through recovery. It's 6 weeks before you start Cadio rehab and your cardiologist will determine when you go back to work.  Maybe you can work out a 10:00 am to 4:00 pm schedule to avoid traffic.  I bet your looking to be home by Christmas.
    Vic



    Original Message


  • 119.  RE: Aortic Aneurysm Support Group

    Posted 11-25-2019 18:26
    Thanks Victor. I appreciate it very much!
    Brian



    Original Message


  • 120.  RE: Aortic Aneurysm Support Group

    Posted 12-01-2019 07:47
    Hi Brian. How did your graft become calcified? I was told our grafts will last a lifetime. Mine is 5+ and now you've got me wondering.


    ------------------------------
    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------

    Original Message


  • 121.  RE: Aortic Aneurysm Support Group

    Posted 01-01-2020 20:16
    Hi all,

    I've known of my leaky valve since the mid-1970s and have been tracking it closely since. While I've had echos for years, which had mostly focused on my heart chambers and aortic root, it wasn't until 2013 when the head of cardiology at UCSD - I was a new patient - suggested I get a baseline CT to look at my entire aorta. In retrospect, I'm stunned that no cardiologist, in the various cities I've lived, never mentioned doing that, especially since I had a bicuspid (or as many saw it, a "probable") bicuspid valve.

    While my root was 4.1 cm, up from the 4.0 in all of the prior echos, my ascending aorta was 4.6. It freaked me out at first, until I realized what that meant – and until I dove into research and realized it's fairly common and that I was 4-9 cm away from needing surgery based on the AA. (Cleveland operates at 5.0, as do others; I believe the put the cutoff for folks w/no risk factor at 5.5, for the average person.)

    Since then, over the past year or more, the root has been stable and the AA has crept up to 4.7-4.9 (MRA, echo), where it remains. We've done several long-distance consults with Dr. Svensson at CC, who has encouraged watchful waiting. I've been watchful, and I've been waiting. But my cardiologist and a consulting cardiologist I also see made it clear that it's not a question of if but when.

    It now, however, appears to be showtime: A week ago, my latest MRA showed the root hat enlarged to 4.9; the AA was still 4.9. I see my cardiologist Friday. We all know where this is headed. I'm sure we will be sending the films off to a surgeon for their measurements. (Surgeons often measure differently than radiologists. Though the guy who read mine is the same person who read my last MRA and is supposed to be very good.)

    I'm now at ... will this be a Bentall procedure? And can it be done through a mini-sternotomy? And...can we avoid anybody having to touch the arch, which is at 4.6, or thereabouts?

    I live in San Diego. I'm 67. I'm at peace with this; not afraid – perhaps because I have done so much research. I've gone so far as to watch videos of how a sternum is wired; not what I had pictured! (A good thing.) It has also been very helpful to see the comments here and on other forums. I can't imagine people who wake up one day and realize they have a valve/aortic issue – and never knew!

    My biggest issue now is...where? I always said that my first choice would be  Dr. Svensson in Cleveland (who requires an in person consult before setting a surgery date). Because of family ties, I added Dr. Pochettino at Mayo to the list. But there also is a surgeon up in at a smaller hospital (Sequoia in Northern California, Luis Castro, who has great stats and reviews on HeartValveSurgery.com. It would certainly be less stressful for my to go there. I have no interest in the LA hospitals. On one hand I can't imagine having this done in a smaller hospital, but a key factor will depend on the complexity of what I need. CC is known to be an impersonal machine, which can be good or bad, depending on the person and situation.

    That's it for now. I've read this entire thread and it's terrific. Glad to have found you.

    Happy New Year!

    Herb




    ------------------------------
    herb greenberg
    ------------------------------

    Original Message


  • 122.  RE: Aortic Aneurysm Support Group

    Posted 01-02-2020 00:58

    Length of time on a CABG varies with the patient. My is going strong after 12 years. And we have folks in our MH Chapter who are in the 20 to 25 years. Most of those watch their diets and get regular exercise. Eating ang exercise changes don't have to be over night, continue to get more regular with your exercise and regularly add another vegetable and /or fruit to your diet

    Joe J 
    3X bypass August 2007
    Ft Myers #312

    ​

    ------------------------------
    Joe Jansen
    Fort Myers FL
    (239) 461-0980
    ------------------------------

    Original Message


  • 123.  RE: Aortic Aneurysm Support Group

    Posted 01-02-2020 08:43
    Herb,
    You have done your research and are better informed than 90% of aortic aneurysm patients.
    i have survived two aneurysm surgeries; an ascending aortic aneurysm (Bentell procedure) in 2007 at Morristown Medical Center and an aortic arch aneurysm procedure in 2017 at New York Presbyterian Weill Cornell Medical Center.
    Both the UCLA and Cleveland Clinic have outstanding staffs and reputations but keep in mind the proximity to your home and family.
    These procedures are complicated and require a longer post surgery recovery than a CABG procedure. You can contact me at fvfabry@gmail.com if you have any questions.
    I hope that 2020 will be a lucky year for you.
    Best regards,
    Vic Fabry 

     


    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 124.  RE: Aortic Aneurysm Support Group

    Posted 01-02-2020 09:36

    Vic, thanks for the kind response. You have had it all! Valve, too? For me, the more complicated the procedure, the more likely I am to go to Cleveland. Less complicated (and after everything I've read - anything short of the arch is less complicated...valve replacement being the most common) I would still want to be with someone who does high volume of at least 100+ valve/aorta procedures a year. My preference is someone who is aorta-centric, but also a facility that ranks high for AVR in the STS rankings.

    It would be an understatement to say I've over-researched this to the point that I realize even in the best hands, at the best facilities, things happen and complications occur. In reading the forums, we are getting a snippet of the folks who have had procedures. I'm guessing that many people have these operations and have little-to-no complications and get on with their lives – and never post a word. There is probably another group, sadly, that doesn't know these forums exist. Too bad more cardiologists don't point them this way; I'm surprised they don't.

    When it became obvious I would eventually need surgery, I started my own prehab program – making sure my weight was in check and my lungs were strong. (Walk daily for an hour, quickly, including some fairly steep hills.) I also have been working on my core. I figure the better the health going in, the better coming out. (Sounds good in theory, at least! We'll see how it works in practice. 😬) 

    My biggest concern is that I run a small business. I write and I research and I keep things going for the three of us. And...I work from home. Everybody has said that resting, healing is critical. But considering you're up and walking from day one, I'm assuming you can also grab the phone or laptop and forward and even respond to emails, etc? On a recent trip back from the Middle East I was intentionally very cognizant of the jet lag - how foggy, disconnected and easily tired I was for a week plus. And I thought to myself, "This must be how it will be after surgery (without the discomfort and for weeks)."

    Vic, I'm still trying to get my head around 7 hours of surgery. That was obviously a full sternotomy? How long were you on the machine? Any lasting impact from that? (Face it: That's a question everybody really wants to ask!)

    One source of motivation for me throughout all of this is the reminder that a few short decades ago, before imaging is where it is now, many of us wouldn't be here to angst over this! I consider myself lucky knowing that I have a bicuspid valve, and the implications it has on the aorta, and that it wasn't caught ... after the fact. 🥴

    Best,
    Herb




    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 125.  RE: Aortic Aneurysm Support Group

    Posted 01-02-2020 10:05
    Herb,
    You have asked many important questions. You can call me today at 1:00 pm EST.  If that's not convenient suggest another date and time.
    Vic
    973-879-5647

    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 126.  RE: Aortic Aneurysm Support Group

    Posted 01-22-2020 13:50
    My ascending aortic aneurysm measured 4.4cm in November and I also have a bi-cuspid aortic valve.  My next appointment with my cardiologist is in June.  In the meantime, I still have many unanswered questions.  Does anybody have experience with the Hospital of the University of Pennsylvania and their surgeons?   NY Presbyterian Hospital would be my first choice but they are not within my insurance network.  Any advise and recommendations are welcome.  Thank you, Nicole



    Original Message


  • 127.  RE: Aortic Aneurysm Support Group

    Posted 01-22-2020 14:25
    Nicole - There are several great Aortic Aneurysm Support Groups on Facebook. I am sure if you posted your question on Aortic Hope you could get some of your questions answered.

    My repair was done in DC. 

    Happy to answer any questions.
    kbbertozzi@gmail.com

    ------------------------------
    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------

    Original Message


  • 128.  RE: Aortic Aneurysm Support Group

    Posted 01-03-2020 05:47
    Herb,

    I consulted with a Boston cardiologist who is an expert in valvular heart disease and of course anuerysm.   One of the many things she told me was that these surgeries are the bread and butter of CT surgeons.  She said you dont have to go to a referral center if you have a good surgeon locally.  At my hospital we have such a guy.  Very good reputation.   I opted to fo it here so I could be near friends and family and I'm glad I did.  Hope that's helpful




    Original Message


  • 129.  RE: Aortic Aneurysm Support Group

    Posted 01-03-2020 09:01
    I have come around to that view, Jeanne, and considering all options. In the end it's always the surgeon.

    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 130.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 10:19
    Herb,
    I hope you're post surgery recovery is progressing well after the aortic aneurysm procedure. Given all the news about the coronavirus, has the clinic put in place any special policies, such as visitor restrictions, antiseptic procedures or use of antiviral masks and latex gloves for the staff?  
    Best regards,
    Vic Fabry

    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 131.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 10:50
    Hi Vic,

    Thx for checking in. Going they my final checkouts. They put in place police that question people as you go in and out of buildings. Definitely quieter than I've ever seen. Must be a lot of cancelled appts!

    Btw, I spoke with both the fellow who assisted Svensson and a very smart infectious disease doc who is overseeing my related antibiotic treatment. Both said masks are pretty much useless unless someone sneezes on you; they both stressed hand washing and not touching your face or eating finger food in a public place.

    My immunity is considered compromised b/c of the surgery. So I intend to be extra fastidious. For me the next 5 weeks are the dangerous period, so we won't be letting anyone in our house.

    Definite more staff, visitors wearing masks. Can't say I see more gloves.

    We fly home tomorrow; seating chart shows the plane as being half full. Since we are in FC, w/me in an aisle seat, I'll probably wear a mask as others board.


    Best,
    Herb



    Sent from my iPhone



    Original Message


  • 132.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 11:27
    Herb,

    If you're traveling with your wife or another family member tomorrow, and if you can manage it physically, try seeing if you can switch with her so you can sit in the window seat instead.  It's that much further away from the aisle and other passengers, although first class is much better than coach in that regard.

    Best of luck and health,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 133.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 15:22
    Hi Ira,

    For boarding I intend to wear the N95 I brought - to protect against any unlikely sneezers. As one doctor at CC told me when she was checking me out: right now planes will probably be cleaner than they ever have been. Plus she said she believed high death countries (China/Italy) are heavy with smokers. Seems folks with lung issues are considerably more vulnerable to the worst impact. My lungs are pretty good, though still building back to strength. BTW, I don't feel as though I just had major heart surgery.

    Cheers, 
    Herb

    Sent from my iPhone



    Original Message


  • 134.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 16:55
    Yay Herb! Sounds like you are making a great recovery. Have a safe trip home.
    Andrea

    Sent from my iPhone


    Original Message


  • 135.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 12:54
    Herb,
    That's good news about your being discharged tomorrow and returning  home.  The next month should go by quickly and that's a good thing. Due to the COVID pandemic, you may be challenged to enroll in cardiac rehab program a local hospital or clinic.

    In that case, if you have sidewalks in your neighborhood, put on your running shoes, bring a bottle and start a walking program. An alternative would be to head to your local high school athletic field. My wife would drive me the short hills indoor mall at 9:30 am.  It's perfect place to get your exercise during hot or rainy weather (but it never rains in southern California)
    You'll be playing golf or tennis or riding your bike in a few months.
    Best regards,
    Vic Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 136.  RE: Aortic Aneurysm Support Group

    Posted 03-15-2020 04:09
    Hey Herb - hope recovery is continuing well - I'm 9 weeks post op AAA and AValve replacement
    I'm very interested in that 5 week (I assume 6 weeks post op) figure you mentioned

    I'm 44yo fit and recovering well but obv with Covid19 am concerned about myself and any additional risk - was this 6 week figure the expected time your immune system is compromised?

    Also I'm wondering about the stuff to do with having the pericardium not being healed etc - is that an additional risk as I've read the virus can get into other organs

    No panic here just looking for info - I'm been working from home since last week and Australia is locking down hard etc
    Anyone have any thoughts on above - thanks
    Tim


    ------------------------------
    Tim Purgacz
    IT Analyst
    Australia
    ------------------------------

    Original Message


  • 137.  RE: Aortic Aneurysm Support Group

    Posted 03-15-2020 04:42
    Hi Tim,

    Six weeks was the high-risk period they mentioned, during which my immunity is the most compromised. After that, based on the surgeon's comments to me, the body's tissue starts melding with the artificial tissue. I think infection risk is always A risk with bioprosthetic valves, but if I heard the surgeon correctly, the first six weeks was the highest risk. I can't speak to the pericardium risk. Once again: The only reason I had this discussion with my docs was because an infection near my prostate, possibly caused or aggravated by the Foley catheter, sent off all kinds of alarm bells. As a result, I'm on IV and non-IV antibiotics for the full six weeks as a precaution risk of a staph or e-coli blood infection, which could impact the heart. After six weeks they feel the risk is minimized. For me that date is April 15, or 4 weeks and a few days.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 138.  RE: Aortic Aneurysm Support Group

    Posted 03-15-2020 08:26
    Hi Tim

    I am 8 months post op and as soon as I heard this
    virus hit the shores of the US, I went into self
    quarantine, but I am assured that as time passes, I am
    going to get infected with this virus, someway or somehow.  

    I am in my mid 60's and have a compromised immune system
    along with still recovering from OHS.  I am lucky to have
    had the best doctors in the Field for my procedure and postop
    work, but no one can repair the damage that time and myself did to my body for the past 60 years.

    You are very fortunate to be fairly young and new to recovery, I wish I could tell you more but your own doctors probably have better answers then any I could give you

    Good Luck Tim

    M



    Original Message


  • 139.  RE: Aortic Aneurysm Support Group

    Posted 03-15-2020 21:53
    Hi Mary / Herb all

    Spoke to my surgeon he confirmed the 6 week immune system comment (I'm 9 weeks tomorrow) - hes been getting plenty of calls!!
    He was reassuring - I also asked about the Pericardium he doesnt fully close (Cleveland Clinic and most others dont either from what I found) but he sort of seals it up but leaves a small closed pouch like access point for future ops - he was unable to comment on any additional risk from COVID re this which is fair enough - my take is you can get pericarditis anyway even if closed from both viral and bacterial anyway (esp if you get pneumonia etc) so there is probably no huge amount of additional risk. If the virus wants to get into organs it can get in via blood anyway - Regardless I am taking no chances and will stay as isolated as possible

    Stay safe people
    Tim

    ------------------------------
    Tim Purgacz
    IT Analyst
    Australia
    ------------------------------

    Original Message


  • 140.  RE: Aortic Aneurysm Support Group

    Posted 03-16-2020 05:49
    Hi Tim, 
    I have not even tried to call my surgeon, but ones own
    surgeon is still the best person to talk to about this virus and your heart.  

    I am reading the news and scholarly articles about this Covid 19, to keep myself informed and not freaked out by my
    imagination which has the ability to go into overdrive quite often in the past couple of months.

    I am assured that I am not alone in doing some things like finalizing affairs and making sure that all  my  personal info and wishes are
    in place. 

    All my best to you too, Thank you

    Mary H



    Original Message


  • 141.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 11:40
    Herb,

    First and foremost, I am excited for your successful surgery. Your observations are similar to mine: it is the surgeon and supporting hospital staff until we check out. Then the ball shifts to the patient and support staff, which typically means family. Initially I had my wife limit my conversations to 15 minutes as more than that took too much energy. I measured my progress by how much I would shift the conversations away from me and to the other person and their lives. 

    Safe trip.

    Thanks for sharing the expert opinion of your doctors as I had not thought of not eating finger foods.

    Brent Zepke
    Author: One Heart-Two Lives: Managing Your Rehabilitation Program WELL.



    Original Message


  • 142.  RE: Aortic Aneurysm Support Group

    Posted 03-13-2020 16:48
    Wonderful thread, glad you are on your way home Herb.

    I could not do Cardiac rehab for weeks after I got home, so I did walks on my own, started out with short romps and then to longer walks....This weather is getting better every day which really
    helps the morale also

    Take care and Good Luck Herb with your Aftercare

    Mary H



    Original Message


  • 143.  RE: Aortic Aneurysm Support Group

    Posted 06-07-2021 17:51
    Hi everyone,

    I am brand new to the group. 

    I was diagnosed with AAA 5.6cm, just last week and now am waiting for a surgery date.  I am 44 years old and this has turned my entire world upside down. My wife and I trying to stay positive through this.  

    Background:

    I went in for a regular physical and the Dr. thought he heard a murmur.  He then sent me to a cardiologist who did a CT and an Echo.  2 days later I have the cardiologist himself calling me telling me that I have a life threatening condition that will require open heart surgery.  I had an angiogram done last Thursday, which thankfully showed no blockages at all.  That was a huge plus.  This past Friday, we met with the surgeon from Torrance Memorial Hospital who will be doing the surgery.  He walked us through the entire process and this was a much more complex procedure than we had anticipated.  Shock, fear, worry, denial, etc., etc. all creeped in.  Tomorrow morning the hospital, the cardiologists, and the surgeons will all present my case and devise a plan and surgery date.  The waiting is the hardest part.  They now have me on metropolol.  I have never had high blood pressure in my life, even though I am 6'4" and 315lbs.  I have been talking to my boss regularly as he had triple bypass 3 years ago.  He has helped provide some good insight, but this is a much different surgery. 

    All of my friends and coworkers now know and it is great that everyone is calling to offer some support, but still the mental part is very challenging.  

    I have been reading everyone's story and it is very comforting to see how well everyone is doing post surgery.  Gives me some great hope!!!

    I know this is kind of all over the place.  

    Thanks and hope everyone has a great day!

    Scott

    ------------------------------
    Scott BAKER
    Senior Vice President
    Pacific Crane Maintenance Company
    Rancho Palos Verdes
    ------------------------------

    Original Message


  • 144.  RE: Aortic Aneurysm Support Group

    Posted 06-07-2021 18:40
    Hello Scott Baker, 
    I had no, none, zero symptoms 2 years ago when my
    doctor also heard a noise during my yearly checkup and I ended up having OHS 2 Augusts ago

    I went in pretty blind, I didn't even use Dr. Google to try to second guess what may or may not happen to me.

    The Heart Surgery had to be done 2 times because of Blood clots after they closed me up, but have not had any 
    problems since the 2nd surgery which was done back to back while I was in Intensive Care.

    I am sure you will have a wonderful team that will guide you through the whole procedure and your recovery.  You will not remember any of the surgery or the Intensive Care, but you may have some dreams you remember while you were either going into or out of surgery. Talk to your Surgeon and to your family and tell them your fears and now is the time to tell them how much you do love them, and how you will be working towards better health after your surgery is over.  

    We are in your corner Scott, and we are reaching out to give you a pat on the back, a hand to hold, solid words of 
    hopefulness and the knowledge that in a few weeks after the surgery, you too will be ready and able to help others who have the same questions you do.

    Good luck and let us know how you are doing

    Mary





    Original Message


  • 145.  RE: Aortic Aneurysm Support Group

    Posted 06-07-2021 19:34
    Hi Scott. Happy to share my experience. Feel free to call or text 904-222-1280 or email kbbertozzi@gmail.com

    ------------------------------
    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------

    Original Message


  • 146.  RE: Aortic Aneurysm Support Group

    Posted 06-07-2021 19:35
    Hi Scott!

    Welcome to the group! 

    I had an AAA and aortic valve repaired August 2019 at 38 years old. Mine was also found during a physical and I had no symptoms at all, I was just extremely lucky that they found it! A lot of us have been through it and are back to living life as usual, but we certainly understand what you and your family are going through. It's certainly no walk in the park but it is something that was caught in time and can be fixed. There are tons of great people on here that will share experience and support and walk with you through their experience with the process!
    I wish I knew about this forum before my surgery, but had a few family members/friends who had been through OHS and I talked to them regularly leading up to and after mine. Feel free to reach out anytime!

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 147.  RE: Aortic Aneurysm Support Group

    Posted 06-08-2021 07:03
    Hi Scott,

    I just want to tell you that although your boss' bypass surgery was the result of a very different medical issue than yours, open heart surgery is still open heart surgery regardless of what necessitated it, and the recovery is very similar.  We're all here for you, but you're very lucky to have a boss that you can talk to in the flesh and who knows exactly what you are and will be going through.  Take advantage of that.

    Good luck and please keep us posted.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 148.  RE: Aortic Aneurysm Support Group

    Posted 06-08-2021 07:35

    Scott, 
    The good news about your diagnosis is that
    it's not considered classic heart disease. An ascending aortic aneurysm is often caused by a connective tissue disorder or genetic defect. Other causes may include physical stress such as weight lifting and excess body weight.  The fact that your tests showed clear arteries, is positive indication for
    your complete post-surgery recovery.   

    I've survived two OHS procedures to correct aortic aneurysms and would be glad to answer your questions and share my experiences. You can email me at fvfabry@gmail.com   

    Good luck,
    Vic



    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 149.  RE: Aortic Aneurysm Support Group

    Posted 06-08-2021 09:04
    Hi Scott, adding to what everybody else said, just with my interpretation: Discovery of this is a life sentence. Imagine what would have happened if they hadn't found it before it found you! I would go so far as to say you actually won the lottery! Yes, this is a big, complex, serious surgery, but it's also a repair - kind of like the hose in your car. I had my hose repaired along with a valve job, a new aortic root and a single bypass in March 2020 when I was 67. I'm 69 today as in: It's my birthday today! If it wasn't for the rapidly fading scar I would never know anything was done under the hood. When you meet with your team ask every and any question - nothing is off limits. As you can already see, you're building quite a support group. Please keep us posted. 

    Cheers,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 150.  RE: Aortic Aneurysm Support Group

    Posted 06-08-2021 09:23
    Happy Happy Birthday Herb.....Have A Wonderful Day Friend



    Original Message


  • 151.  RE: Aortic Aneurysm Support Group

    Posted 06-08-2021 16:56
    Dear Scott and Ira
    Ir is so right! The medical details and techniques and specific diagnosis us between you and your family and doctors. 
    You are fortunate that you have a  boss / Friend whi has been though the "nightmare" and process.  His advice will be bery helpful to you. 
    Both you and he are welcome to join mendedhearts. Find a chapter near you for support group and participate is whatever way is available ( most meetings ste on zoom since hospitals are on limited events) 

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




    Original Message


  • 152.  RE: Aortic Aneurysm Support Group

    Posted 02-06-2020 23:50
    Hi all, update:

    Flew out to the Cleveland Clinic. Met with Drs. Griffin (cardiologist) and Svensson (surgeon). Things seemed to have progress faster-than-expected, mostly on the valve side of things. With a root of 4.9cm and an AA of 4.8 and suddenly severe regurgitation (up from moderate/severe) and severely stenotic bicuspid valve (from moderately stenotic), a slightly dilated LV and now a small MV leak, Dr. Svensson's advice: "Do this soon."

    Surgical date is March 4. I'll have a Bentall procedure with the Edwards Perimount bioprosthesis 2700 (following in your footsteps Vic) and an ascending aorta repair. Full sternotomy.

    My arch does not need to be fixed and their view is that with a bicuspid valve and no aneurysm of the arch, I should be fine. (This is why it pays to get multiple opinions: My cardiologist and another surgeon read the latest MRI to mean my arch should be repaired as well. CC added a CT w/contrast to the mix for the final opinion.)

    I was blown away by the CC and the two docs I met with. Quite an operation. Mortality rate for this procedure at CC is 1%. The stress echo showed (thankfully) that my heart muscle is still very strong. Svensson's view is that if we get this done before there is heart damage, the LV and mitral valve should revert to normal.

    I'm fully at peace with this and actually looking forward to getting it done and getting this one hurdle out of the way. I realize there are a list of possible normal complications like afib, etc. We'll cross that bridge when and if we get to them. I feel I will be in great hands.

    Cheers,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 153.  RE: Aortic Aneurysm Support Group

    Posted 02-07-2020 10:52
    I found one thing to be true Herb with my impending surgery last August.  I loved my Surgeon and my cardiac team and trusted them and was able to bounce all my questions and concerns to the team prior and leading up to the actual surgery any time of the day or night with emails and phone calls if needed.  Someone always got back to me in short time and that really helped immensely.

    Your heart is strong and you are at Peace with your decision to go forward.  If you have any concerns or questions before March surgical date, please do not hesitate to write us here at the Forum

    Good Luck Herb and Best Wishes to You



    Original Message


  • 154.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2020 08:51
    Thanks very much, Mary. This is all part of the journey. 

    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 155.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2020 08:57
    Love your attitude Herb, Carry On Then



    Original Message


  • 156.  RE: Aortic Aneurysm Support Group

    Posted 02-08-2020 08:58
    Herb,
    You picked the best hospital for cardiac surgery. I had a quad bypass 15 years ago, then pacemaker-defibrilator 7 years ago. They have the most incredibly talented surgeons at the Clinic Main Campus. You will be in great hands and expect to have a better quality of life afterwards.
    I pray that you do well and feel much better.

    --
    Frank Caruso
    WWW.CARUSOIMAGES.COM
    440-829-1386

    Sender notified by
    Mailtrack 02/08/20, 08:55:29 AM



    Original Message


  • 157.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2020 00:53
    Thanks very much, Frank. That's what I'm counting on!!! ;-)

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 158.  RE: Aortic Aneurysm Support Group

    Posted 02-20-2020 20:52
    Hi Herb,

    I found out that I had a mildly leaking bicuspid aortic valve and an aortic aneurysm (4.7) early last summer. Long story short, After sending my records to Cleveland they recommend moving forward with surgery. I'm 38 and in good shape so I was a low risk candidate for surgery. I flew there for preliminary appts(echo, ct, etc.) and at that time my aorta measured 4.9. My cardiologist Dr. Xu and my surgeon Dr. Tong both agreed that surgery was my best option as it would only get worse and more dangerous if I wait. Dr. Tong recommended a David Procedure which wasn't even mentioned as an option with the first surgeon I met with in South Carolina. He and Dr. Svensson are two of the few that perform this procedure at CC.

    My procedure was scheduled for 2 months later (August 23rd) and I spent every day leading up to it trying to stay positive, although its easier said than done! I had never had surgery before so I was terrified of what was to come, not to mention my wife was 6 months pregnant with our first child. Dr. Tong assured me that I would get through the surgery and be able to be there when our daughter was born. I had to constantly remind myself that just because this is not routine for me, it is just another day for the surgeons. Dr. Tong does about 30 David procedures a year and CC does about 120 per year. These surgeons do 2 surgeries a day and the procedures are so routine for them. I also talked to friends/family on a regular basis that have had OHS and found that it helped me greatly! Speaking with people who have been through it is probably the best suggestion that I can give. It gives us hope that we will get through this and be able to recover as well.

    The recovery was tough and I had a few speed bumps early on but its doable a day at a time. I followed their discharge directions and slowly but surely started healing little by little. Now, almost 6 months later I'm exercising regularly and lifting weights again, playing golf, and back to a normal life again. Some days I find that I haven't even thought about my heart until I look in the mirror and see the scar. I used to think "why me?" but now I am grateful that this happened because it has given me a new appreciation for a lot of things that I used to take for granted. 

    You are welcome to give me a call. I'm available anytime. 772-215-1621

    wishing you the best!




    ------------------------------
    Cole Morrison
    Saint Simons Island GA
    ------------------------------

    Original Message


  • 159.  RE: Aortic Aneurysm Support Group

    Posted 02-21-2020 09:49
    Hello Cole, 

    Wonderful note and congrats on your successful surgery and the birth of your new baby

    I like what you said about not even thinking about your heart on a daily basis after 6 months out from surgery.  

    I will be doing something, and the thought will fleetingly pass that I just had heart surgery 6 months ago and should I be freaking  out more or not when I don't even think twice about getting around on a daily basis any more.

    Thank you so much for the note

    M





    Original Message


  • 160.  RE: Aortic Aneurysm Support Group

    Posted 01-03-2020 05:02
    Karin , Its  with  deep regret I have to inform you and  the others  Here  That Brian  Did Not  survive  his  surgury  this time   Yes  he made  16   years ,  when he began his  recover   The first time  He  waasnt  able to sit still   so HE  began  a Web sight    which   AT least for now  is  accessable  ( I dont know  IF his  family will keep it up  of for how long if the  do  BUT HIs was  the be all tell all of   web pages on the subject   of  AORTIC  Anuerysm and  dissections  in the  US and   parts of the world    http://www.aorticdissection.com

    ------------------------------
    Jim Sanquedolce
    CT
    ------------------------------

    Original Message


  • 161.  RE: Aortic Aneurysm Support Group

    Posted 01-31-2020 13:05
    Good morning Victor, 
    I had my first Aortic Dissection surgery in 2009 and the second in 2017. I am 64 years old, but was only 53 the first time. I am happy to connect with others with similar histories. Life can be lonely when it appears that you are the only one in the world dealing with the complications of this type of surgery. I hope to make more connections because there are days that I truly need someone to talk to, but just as I need support, I am willing to offer it. 

    Maria T Herrera
    mtriny1@gmail.com

    ------------------------------
    Maria T Herrera
    Yorkville IL
    (217) 414-4048
    ------------------------------

    Original Message


  • 162.  RE: Aortic Aneurysm Support Group

    Posted 01-31-2020 16:04
    Hello Maria and Vic, 

    I had Aortic Surgery in August of 2019, had never ever heard of it before and
    had no symptoms to complain about.

    My Aneurysm was found during a Free Cancer Check in May of 2019 and surgery
    followed after that

    I don't really know what is a normal recovery or not, I just know that every day I wake
    up I am so grateful to have been given another day

    Thank you for Posting

    M

    ------------------------------
    Mary H
    ------------------------------

    Original Message


  • 163.  RE: Aortic Aneurysm Support Group

    Posted 01-31-2020 18:14

    Maria,
    Your experiences with two aortic aneurysms is not as uncommon as you might think.  There is a congenital defect called connective tissue disorder which predisposes some people to aortic aneurysms. My first aneurysm surgery was at Morristown Medical Center 2007 which was followed by an aortic arch aneurysm repair at New York Presbyterian Weill Cornell Medical Center in 2017.  These are recovery guidelines I was given and that I would recommend to you:

    limit lifting to 15 lbs.
    take meds as scheduled
    maintain healthy weight
    adhere to a healthy diet
    exercise at least five days a week
    Do things that you genuinely enjoy

    email me at fvfabry@gmail.com with questions.
    Best wishes,
    Vic
     



    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 164.  RE: Aortic Aneurysm Support Group

    Posted 01-31-2020 19:10
    Vic, question:

    Did you have a full arch or hemiarch? I take it when your first procedures was done your arch looked fine?

    Headed to CC for a consult (w/Svensson) and tests on Monday/Tuesday. My cardiologist and another surgeon I consulted with (Castro) say my arch (likely hemiarch should be done at the same time.

    Thanks,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 165.  RE: Aortic Aneurysm Support Group

    Posted 01-31-2020 20:08
    Herb,
    The first surgery in 2007, was a 6 hour procedure to replace an ascending aortic aneurysm (10.2 cm) included replacing the aortic valve. The second surgery in 2017 was a 7 hour full aortic arch procedure which did not effect the first surgery.  Both procedures were surprising uneventful but the post surgery care and recovery are things you need to plan for with your family.  Good luck,
    Vic


    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 166.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 13:30

    Your advice is good for all heart patients and for people in general!!!! The only rule that you advise differently is the 15 pound limit and I guess that that it is condition specific. For a while i was limited to 10 pounds ( post mitrovalve operation and complications) . 

    As a visitor to  heart patients, i remind them: a gallon of milk is 8 pounds. This is a great "measuring Stick "  for estimating if the object is too heavy to lift.   The hardest aspect of the limitation is not  picking up grandchildren 



    ------------------------------
    Marilyn Rosenhouse
    Dallas TX
    (214) 850-0219
    ------------------------------

    Original Message


  • 167.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 16:49
    Marilyn,
    The specific weight limitations vary by surgeon, specific type of open heart procedure and an patients physical type.
    I have seen weight limitation recommendations, published in hospital publications which range from 10 lbs to 20 lbs.  
    A  friend who disregarded these recommendations resumed his weight training one month after after bypass surgery.
    He had to be readmitted to the hospital to have the sternum wires closing his breastbone replaced.  He blamed his
    surgeon for the problem but I believe it was his own fault for not following medical advice.  I recovered from surgery
    almost three years ago and I'm still very cautious with upper body exercises.  I like your use of a gallon of milk as 
    an example of the weight limit for open heart patients. 
    Vic

    ------------------------------
    Victor Fabry
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 168.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 17:12
    Re Weight Lifting after Open Heart:

    I was in Nursing Home for a month after my Open Heart and when
    released from care, was told I could now lift 20 pounds  by my Surgeon when I got home
    that afternoon.  

    I followed his instructions, and within a few days had clicking and popping in my chest when
    I moved or breathed deeply.  After calling his office 3 times, Doctor ordered a CAT and my
    Sternum was found to be fractured.  Will get another CAT in May and am now back down to lifting 5
    pounds only.  The 20 pounds in question was the weight of a bucket of animal feed once a day.  

    One really has to be careful before doing anything with regards to lifting weights


    ------------------------------
    Mary H
    ------------------------------

    Original Message


  • 169.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 18:34
    Mary,
    It would have been best to have waited 3 months after your OHS to start lifting weights. Would have been good to start with 5lbs at that point and worked your way up as your body got stronger. I'm having OHS in a month, and plan to start lifting weights at 3 months post surgery. I will start at 5 lbs, and work my way up as the body gets stronger. Everyone's body is different in how fast they heal, and respond to exercise.

    Thanks,
    Scott Woodward

    Sent from my iPhone



    Original Message


  • 170.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 20:35
    I agree with you exactly.....I did as the Doctor said to do.  Now I double check everything
    on my own and read the posts here at this Open Forum...Thank you for replying

    ------------------------------
    Mary H
    ------------------------------

    Original Message


  • 171.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2020 21:22
    You're welcome, and just take it slow.  

    Sent from my iPhone



    Original Message


  • 172.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 05:46
    Folks,

    I have been lifting weights for 50 years.  After my CABGx5 open heart surgery, at age 67, I was given a 5 pound weight limit for 12 weeks, which I followed religiously.  Having graduated from rehab after 3 months, and having been cleared by my cardiologist to resume full activities, I returned to the gym determined to resume my full weight lifting program.  

    I started with bodyweight training, including partial pushups, dips and pullups (I was too weak after a three month layoff and 30 pound weight loss to do the full range exercises), but quickly progressed to full range of motion exercises and light dumbbell work. When I say light, I only mean that it was light compared to my pre-surgery weights.  It did not feel light at all post-surgery.  Within less than a year and a half after resuming weight training, my lifts were back to approximately 85% of my lifts immediately pre-surgery.  Since I intentionally maintained my body weight at 85% of my pre-surgery weight, I considered this a full recovery.

    I carefully listened to my body at all times, backed off immediately if I felt any pressure to my sternum and, as a result, at no time did I suffer any sternal complications.  I turn 70 this July, I'm still going strong and the kids in my gym call me "sir."  Listen to your doctors and your own bodies, take your time, use common sense, take your meds, eat healthy, stay at a healthy weight for your age and become Jack LaLanne.

    Good luck,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 173.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 10:14
    Ira,
    Congratulations on your complete recovery from open heart surgery. 
    Your surgeon and cardiologist have given you good advice. 
    However, patients recovering from an aortic aneurysm must be particularly cautious about restarting a weight lifting program. The straining with heavy weights, can cause additional problems and should be avoided.  
    Vic
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 174.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 11:05
    Victor,
    I'll be having OHS in a month to repair an ascending aortic aneurism. My surgeon had told me that I could lift from 0 to 50 lbs 3 to 6 months post surgery, and beyond 50 lbs 6 months post surgery. I will start off at 5lbs 3 months post surgery, and gradually work my way up as my body gets stronger.

    Sent from my iPhone



    Original Message


  • 175.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 10:43
    Thank you Ira so much...

    I read your note with great interest, keep up the great work Friend

    ------------------------------
    Mary H
    ------------------------------

    Original Message


  • 176.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 12:14
    Great discussion on post surgery exercise. My quintuple bypass started my journey of thinking about my body in new ways. What an exciting process. I, we, are amazing. Simple things how human bodies can digest and extract what we need from the food in the arctic to the equator, prepared in all sorts of ways. Imagine if it was not automatic? Suppose you had to direct your body on what to burn, store and push out.

    Broken bones heal themselves by somehow slowly reconnecting. When physicians can, like as for extremities, such as arms and legs, doctors ensure that they are properly aligned and then immobilized with casts for a typical time of six weeks. When not possible, like for head fracture or clavicles, immobilization with casts is not feasible, the recommendation is to not disturb the relationship of the two parts of the bones. Ribs fall into the same category as clavicles with the exception that our entire rib cages expand and contract with each breath. The expansion, and contraction, is not disastrous if both sides it in unison then the contact is maintained. My doctors advised any exercise that involved pulling my arms apart was a risk of permanent chest damage, although they did not specify any time periods.

    My goal was regaining my former lifestyle with no restrictions. My timetable was flexible with a cap of a year, although my impatient soon shorten it. Integrating the above into my plan, I slowly developed my cardio and avoided weights and exercises that required pulling my arms apart for approximately six weeks. Seven months later my tests came when being stuck in an elevator high up, I had to repeatedly, and for prolonged periods, prey open the doors with exactly that motion: I passed.

    Hope this is helpful.

    Brent   



    Original Message


  • 177.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 13:42
    Brent,

    Your elevator story highlights how extremely important it is to develop functional strength by using exercises that utilize multiple muscle groups at the same time.  I've always loved bodyweight exercise like pushup and pullup variations and body weight squats, which I incorporate into functional weight lifting (standing presses, deadlifts, high pulls), rather than isolation exercises.  

    A well known strength author with whom I correspond, stresses the ever increasing importance of functional exercise for older people, citing statistics about the devastation from which older people suffer as a result of slip and fall cases.  He believes that, as we age, it is more and more important to maintain strong legs, hips and lower back, as well as the type of balance that can be learned through exercises that move your body through space.  I certainly agree.  I've also always told people that the ability to do pullups might one day save your life, and that your pulling strength also could one day save the life of a friend or loved one.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 178.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 21:10
    Hi All! I just had my one year anniversary of my Aortic Aneurysm surgery. Hurrah! I am feeling great, and am a Mended Hearts volunteer at Scripps La Jolla. I enjoy visiting patients and hearing their story. AA patients are rare. I feel very blessed.
    Andrea (Andy)

    Sent from my iPhone



    Original Message


  • 179.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 21:18
    Andrea,
    Congratulations, and glad you're doing great. How did you go about volunteering?

    Thanks,



    Original Message


  • 180.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 21:35
    Hi all,
    I keep hearing about Connective Tissue issues bit how do you know if you have that?
    I was just diagnosed a few months ago with a 3.8 cm AA, and we are watching it every 6 months.
    My heart and lungs are healthy with no problems.
    I have had fibromyalgia for over 10 yrs now and osteoarthritis. Scheduled for a knee replacement March 30th.
    Is there a test for this Connective tissue disease,
    and anything they can do for it?
    I appreciate all of you on here and the information that you share. 
    Roni Marie

    ------------------------------
    Roni Marie
    IN
    ------------------------------

    Original Message


  • 181.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 22:24
    Ronie Marie,
    When I was diagnosed with my aneurism, I saw a Geneticist, and they determined I didn't have a connective tissue disorder. There wasn't a specific test to take. They can just tell by looking at you. They look at your limbs such as your fingers, arms, and legs to see if they are abnormally longer. Usually people with Marfan's are tall, with longer fingers, arms, and legs, and are generally pretty thin.

    Thanks,
    Scott

    Sent from my iPhone



    Original Message


  • 182.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 22:57
    Hi Roni,

    You can make an appointment with geneticist and check if you have a connective tissue disorder. If your systemic score is 7 or more you will have a clinical diagnosis. Also a geneticist  will run a genetic blood test if you consent for 27 or more genes associated with thorasic aneurysm.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 183.  RE: Aortic Aneurysm Support Group

    Posted 02-03-2020 06:51
    Thank you Elana. I wasn't sure who to see about it.
    With Fibro, you have so many symptoms, it could be something else and you wouldn't know it.

    ------------------------------
    Roni Marie
    IN
    ------------------------------

    Original Message


  • 184.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2020 23:05
    Hello Andrea, 

    Congrats on your year anniversary ......would love to hear how you have successfully reached this
    major anniversary...what is your rehab program like and diet also if you don't mind me asking.

    Thank you and again, Congrats to you


    ------------------------------
    Mary H
    ------------------------------

    Original Message


  • 185.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2020 12:37

    Vic,

    I am a 68 year old male living in Bethlehem, PA who thought I was healthy.  I run 6 miles three times per week, lift weights, do a lot of strenuous and physical activities, mountain hike, kayak, cross country ski, etc.

    An ECHO in August 2017 indicated a 3.4 cm aortic root aneurysm at the sinus of Valsalva.  This increased to 4.0 in an ECHO in August 2019. 

    I started having a slight breathing problem and very slight chest pressure after running three miles and also while weightlifting and doing strenuous activities.

    The impression from a recent CT scan with contrast was "Mild aneurysmal dilatation of the aortic root measuring up to 4 cm in diameter at the level of the coronary sinuses. Mild to moderate atherosclerosis. No acute abnormality within the chest within the limitations of this unenhanced study."

    I will check with the local cardiologist about testing for Marfan syndrome.  I am also trying to find out the exact causes of my dad's death due to HCVD 35 years ago, his brother's heart problems and my maternal grandfather's "heart attack".  I always thought I would overcome all this by being very healthy.  It appears I was wrong. 

    I have an appointment with a local cardiologist at the end of February.

     You have been to two very good hospitals in Morristown Medical Center in 2007 which was followed by an aortic arch aneurysm repair at New York Presbyterian Weill Cornell Medical Center in 2017.

     Why did you change hospitals?

     What cardiologists and surgeons did you have at each?

     What hospital and docs would you recommend from your knowledge and experiences if you had my conditions?

     I am also thinking about the Cleveland Clinic.

     Thank you greatly.

     John



    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 186.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2020 14:44
    John 
    My first surgery was performed by Dr. John Brown, Chief of CardioThorascic Surgery at the Morristown Medical Center.  He should be your first choice.  My second surgery was performed by Dr. Len Girardi  at NYP Weill Cornell Medical Center.  Dr. Girardi was chosen because he is a specialist in aortic arch procedures.  You are taking the correct steps for yourself and your family.
    Best of luck,
    Vic




    Original Message


  • 187.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2020 15:34
    Vic,

    Thank you.

    Was there a cardiologist you also saw at both hospitals that you would recommend?

    Best regards,
    John

    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 188.  RE: Aortic Aneurysm Support Group

    Posted 02-09-2020 16:59
    John,
    Dr. John Mondelli is a well known cardiologist with the Atlantic Cardiology Group at 95 Madison Avenue, Morristown, NJ.  His office is located across the street from the MMC entrance.
    Vic




    Original Message


  • 189.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 09:28
    Vic,
    Thank you.
    John

    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 190.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 22:17
    John, I'm 68 in June and will have surgery in a few weeks. Will have my valve, root and AA replaced/repaired.I wound up at Cleveland. I live in San Diego. Very impressed. Check back with me AFTER surgery to see if I remain so!😱 😉

    Vic, on the other hand, is living proof of the results of two successful surgeries closer to his home.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 191.  RE: Aortic Aneurysm Support Group

    Posted 02-11-2020 05:35
    John, Michele, Herb, 
    The decision of where to have open heart surgery has multiple factors.  Reputation of the medical center, speciality of the surgeon, proximity to family and friends, post surgery care,
    follow up visits, cardiac rehab. 
    Cleveland Clinic has a world wide reputation but so does Mayo Clinic, John Hopkins and New York Presbyterian.  I am a very fortunate to have outstanding surgeons both times.
    I wish you the best outcome possible.
    If you chose Morristown Medical Center,
    please mention my name to Dr. John Brown.  Best of luck,
    Vic Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 192.  RE: Aortic Aneurysm Support Group

    Posted 02-11-2020 10:38

    Vic,

     Thank you.  You bring up some very good points.

    I will definitely mention your name if I go to Dr. John Brown.

    Best regards,
    John



    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 193.  RE: Aortic Aneurysm Support Group

    Posted 02-11-2020 10:34

    Herb,

    Thank you for your posting.

    Is Dr. Svensson the specialist at Cleveland Clinic for aortic root replacement/repair?  Are there other surgeons there that also specialize in this aortic root replacements/repair?  How many does Dr. Svensson do a year?

    How long did they say you would be in the hospital and how long would it be before you can fly home?  I assume you would stay at the Clinic hotel for a week or two after surgery?

    Was shortness of breath or slight tightness in your chest a symptom for you after strenuous exercise whether aerobic or weight lifting/resistance?

    I have both and have stopped all activities.  I see a local cardiologist on 2/26.

    I am very interested in following your operation and total recovery process.

    Good luck with your surgery!

    Best regards,
    John



    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 194.  RE: Aortic Aneurysm Support Group

    Posted 02-11-2020 11:02
    Hi John,

    He is chairman of the Heart Institute and considered top notch – also a Phd, having authored dozens of studies over the years – but he is one of quite a few that do aortas. I think he told me he does over 100 roots a year – I think that's what he said to me. Figure he does two surgeries a day, and a % are roots. Whatever the number is ... he would be at the high end nationally. Other aorta-centric docs there include Johnston and Roselli, but there are others, as well. If I was going to Mayo, which had been on the list before this got expedited, it would have been Dr. Pochettino, who came highly recommended by a cardiologist there.

    They said I should expect to be in the hospital 5-7 days, leaving on the 10th day, barring complications. We will be staying at the Intercontinental connected to the hospital.

    In my case, I have virtually no symptoms unless I OVERLY exert. It was the latest scan's view (done at CC) of the regurgitation, which suddenly turned severe. While my aneurysm is noteworthy, on its own it wouldn't be surgical yet.

    I do expect to post updates, assuming my wife doesn't entirely hide my phone, computer, which she has threatened to do – especially after she heard a phone conversation I heard with Vic, during which he suggested as much! ;-)

    Obviously, I have no idea how I'll feel. I'm expecting (in principle, based on everything I've read) to feel horrible for 1-3 days, and tired for weeks. In reality, we'll know soon enough!

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 195.  RE: Aortic Aneurysm Support Group

    Posted 02-11-2020 12:11
    I am on  Dr. Lars Svensson's  list too. Sent my images and dr notes to his office. He operated on Jeff Green, NBA basketball player as well.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 196.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 17:04
    Hi Victor,
    I hope you are doing well. I don't usually write on this forum because I have such a small problem compared to most of the people on here. 
    There's such a plethora of information and inspiration that I do glean a lot just by reading people's stories.
    I'm 64 years young and found out from a heart scan to detect plaque in my arteries that I have a 3.8 ascending aortic aneurysm.  
    I was dumbfounded as I have had zero plaque each time, including this one and never any kind of heart issues.
    My heart, arteries, and lungs are fine thank goodness.
    Now I'm in wait and see mode...like most people with
    aortic aneurysms are.
    My brother died very suddenly one morning at age 65.
    We thought it to be a stroke or heart attack and no autopsy
    was performed.
    Now I'm strongly suspecting it might have been an AA, since they can likely be a hereditary issue I've learned.
    My grown kids are being checked.
    How long did you know you had it before your surgery?



    ------------------------------
    Roni Marie
    IN
    ------------------------------

    Original Message


  • 197.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 19:11
    Hi Roni

    I am just going to jump in on your note to Victor, real quick answer for me is my surgeon says  I may have been born with mine, and I had no symptoms at all...ever.

    M



    Original Message


  • 198.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 19:23
    My cardiologist told me the same at size 4cm  - like it is my "biology".   Had not even order a CT scan at that time. When the aneurysm dilated to 4.4cm in one year,  he still was very casual. That is why he is my former cardiologist. 😉

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 199.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 20:20
    Elena, my AA is now 4.8-4.9 and my root is 4.9. The surgeon I'm using at Cleveland Clinic said that he considers that borderline, but because my valve regurgitation has turned severe he says it's time to operate. They tend to go when hit its 5.0.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 200.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 20:21
    Hi Folks-
    Yes, I too am going to jump in here. I'm 52 and in very good health.  I've never lost anyone in my family to AA.  In July I found out I have a thoracic aa that is 4.2cm.  They re-measured in Jan and it came back at 4.4cm.  I also have no other issues of any kind.  I got a 2nd opinion at Mass General in Boston.  Both my local and the Mass Gen Drs. have said I was likely born with this and it will never be an issue we have to address.  The reason I am chiming in is because I was extremely alarmed at the supposed .2 cm growth in 6 mos.  That might have meant surgery in just a few years, however my surgeon took the time to explain some important info.  She took us into her office to show us how easy it is to move the cursor on the CT scan just a tiny speck and the tenths of cms change.  Literally if the first scan was measured from the interior of the aortic wall and the next scan was measured from the exterior, it could result in a .3 cm change.  I don't know your situations but I am just advising not to panic and to listen to the experts.  Stay in good health, good spirits and follow the physicians' recommendations including avoiding strenuous lifting.  Prayers and best wishes to all-  Michelle 



    Original Message


  • 201.  RE: Aortic Aneurysm Support Group

    Posted 02-10-2020 22:14
    100% true. Depends on who I doing the reading, and surgeons often cut the measurements at different spots than radiologists and/or cardiologists. The first time mine looked 4.9 my cardiologist sent me to a local surgeon, who read it to be 4.7cm. (based on an echo, not MRI or CT.)

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 202.  RE: Aortic Aneurysm Support Group

    Posted 02-13-2020 13:46

    I have an aortic root aneurysm measuring 4.0 cm by both ECHO and CT scan with contrast which grew from 3.4 cm 2 years ago.

    I have an appointment with a local doctor at the end of the month and then I want to go to one of the top docs.

    I have stopped all running, strenuous exercise and any lifting over 40 lbs.

    I have done a lot of research on the internet and there are some great sources by top hospitals and associations.  This web page by Vic has been fantastic along with the responses by Herb, Vic and others to my postings!

    In the meantime, before I have a chance to ask the local doc or one of the top docs, I was wondering what others have been told about the following questions that I cannot find answered anywhere:

    1.  I realize that many good sources say not to lift anything greater than 40 lbs due to the chance of dissection or rupture.  However, am I causing the aneurysm to enlarge over time by lifting over 40 lbs? 

    2.  Am I causing the aneurysm to enlarge over time if I lift only 25 lbs?  

    3.  Am I causing the aneurysm to enlarge over time if I run? 

    4.  Does someone have a list of things not to do during a "watch" period?

    5.  Should I disconnect the airbag in my car?  An airbag is extremely forceful and can cause an aneurysm so I can easily see how the airbag can cause an existing aneurysm to rupture and immediately kill the person.  Is someone with an aortic root aneurysm better off with or without the airbag on?  Keep in mind that an airbag can go off for a minor fender bender that would have not caused any injuries at all.

    Perhaps these answers will be beneficial for anyone on a "watch" program.

    Thank you and best wishes to all,

    John



    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 203.  RE: Aortic Aneurysm Support Group

    Posted 02-13-2020 14:14
    John, I was on the watch list for years. The thing they'll watch closely is that expansion in such a short period of time. When mine started moving I went on the every-three-month-scan plan (echo/MRI w/o contrast - they have a machine here w/special software that can do it.) With this latest move from 4.6-4.8-9 in six months we got serious. I don't think anybody will be able to tell you how fast. One thing I was told was NOT to stop exercising; I walk, don't run, but only b/c I gave up running years ago after a meniscus tore and I came to terms with the fact that I don't have a runner's body. But like you I was told to avoid heavy lifting or straining. That has been the advice. They do worry about dissection. 4.0 is not considered severe; in fact, is where I was for many years, as it slowly crept. Just keep on it and you will be fine and if your doctor gives you any grief for wanting to keep on top of it - especially if you don't like your doctor - get a second opinion. 

    Remember, the guideline at most big centers with high volume is to consider surgery at 5.0. And then it depends on what kind of valve you have and other factors.

    I will say that if you think surgery is in the future, even if years, get in as good a shape as possible. I was reading an interesting study last night on lung recovery/pain of people who are overweight vs those who aren't. There are no guarantees with any of this and I could be the one with serious complications but in shape is better than not in shape going into surgery.

    In the least , it gives you a good target and motivation.

    Best,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 204.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 11:19
    Herb,
    Thank you.
    You are 100% correct on being in shape.
    In 2014 I went to one of the top docs for an aggressive cancer and lengthy surgery.  When I first met the doc, he gave me a handout he made for all of his patients "Boot Camp for Surgery".  Every time I communicated with him prior to surgery, one of the first questions he asked was always where am I in the boot camp training.  Although this was fairly easy for someone in shape, it did stress the importance of losing weight and being in shape.
    Best regards,
    Ed

    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 205.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 11:45
    John,

    As long as you have the aneurism, don't plan on going to any amusement parks to ride the bigger rides, unless they're kiddy rides.
    My surgeon told me not to go on any bigger rides like roller coasters etc, anything that may cause a spike in blood pressure. My wife
    and kids are going to Disneyland this weekend without me as I'm unable to go. I was a bit bummed out about it. My surgery is in  couple
    weeks, and I should be able to go on any rides around 3 months post surgery, and or sometime down the road after that.

    Scott Wo​odward

    ------------------------------
    Scott Woodward
    QA Assistant
    Northrop Grumman
    San Ramon CA
    ------------------------------

    Original Message


  • 206.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 11:53
    Hi John, 
    I found this piece of info out of Phoenix and it was very interesting to me.  It is not about OPS but still the numbers for recovery were impressive .  Thank you

    Before patients get joints replaced, they have to take the two-hour training program. They learn about pain management, get an orientation of their upcoming surgery and start learning their rehab exercises.

    Joan Bolzan, RN, MSL, formerly with Mercy Gilbert Medical Center says, "It's 101. The more the patient knows, the better they do. It decreases their fear, their anxiety. It helps the outcomes on the back end when they are done with surgery."

    Joan says in the five years since joint boot camp began, average hospital stays have dropped from three days to two. Dennis believes boot camp is helping him get better faster.

    "It's slower than I want, but it's getting better. Just takes a long time when you're 76-years old," Dairman told Ivanhoe.

    His doctor told him it might be a year before he can walk unassisted, but he plans to ditch the walker in a few weeks. He and Sparky want back in the game!

    Mercy Gilbert's joint boot camp also educates family members with its coaches program. Boot camp has been so well-received and so successful, there are plans to use a similar program before spine and bariatric surgeries.




    Original Message


  • 207.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 12:47
    Mary, I keep thinking that knowledge WILL help reduce some of the pain/anxiety. Not looking forward to tubes being pulled out but...at least I know what to expect and unlike some OHS patients, I know there will be tubes!!! 😬 These patient forums are fantastic for knowledge and knowledge in most things is power; can't believe it is any different here. So, for example, my local cardiologist and I are conspiring for post-surgical appointments. He cautioned me that I may have aFib and that I should not be worried if I do - b/c he worries I'll freak out. I tried to explain to him that based on reading patient reports, I am fully expecting aFib, even though the CC cardiologist said that given my situation it may be less likely (the surgeon, meanwhile, had it at the top of his list of risks he read off, including stroke, kidney damage, paralysis and - I think death was in there, too, but a mere 1% chance); if I don't get the aFib that will be an upside! Ditto for the rest of them. As for death...this is one time I do NOT want to be in the 1%.😉

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 208.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 14:52
    Hi Herb, 
    My surgeon did give me the basics on Heart Surgery but there was so much unknown before going in for me that I flew blind for the most part.  I did not even know I was having a Quad and Aneurysm Repair until about a week before my surgery.  

    He told me not to go to DR Google for my answers, I should come to him and his staff with questions.  I did look on YouTube at the Sternum repair of the OHS, and my Surgeon told me that Yes, they always show the dramatic things on the YouTube.

    Thinking back now 6 months later, I wish I had known of this forum before my surgery...This is a wonderful place for those facing surgery and those recovering from surgery..

    M





    Original Message


  • 209.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 15:00
    Those doctors hate Dr. Google. ;-) I for one love it.

    How did your recovery go?

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 210.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 17:28
    Dr. Google is my favorite too! I can educate some doctors after my research and multiple interactions with Dr. Google.😂👍

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 211.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 17:31
    I am appealing to the California Medical Board to receive a Medical Degree from Google U, with a speciality in valves and aortas.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 212.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 18:42
    That is so funny Herb....You got a big chuckle out of me with this one...

    I had Open Heart 2 times in August, once on Monday and one more reopening on Tuesday for emergency surgery after my lungs filled with blood.

    Recovery was longer then normal according to Dr Google, and I got to come home after 2 months in the hospital and nursing home.  

    My recovery is doing better once I got to go home...I am not a hospital type person and I do not thrive in the hospital setting.  

    Thanks so much for your note...Take care Herb

    M



    Original Message


  • 213.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 19:02
    👍👍👍😂 Please invite me to your Graduation party!

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 214.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 19:45
    I have visited all types of open heart surgery patients in-hospital for over eleven years.  Before surgery, an informed patient has a definite advantage in discussions with their surgeon. 
    However, the lessons patients learn during their recovery are those which no surgeon or few cardiologist have experienced or can fully understand. 
    You can best prepare for surgery by asking questions, learning from others and then making informed decisions.
    Vic Fabry




    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 215.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 20:49
    Very true, Victor, "the lessons patients learn during their recovery are those which no surgeon or few cardiologist have experienced or can fully understand."  And, Mary, no patient thrives in a hospital setting.  What we do, we hope, is survive.  It is in our survival that we thrive.  And it is in learning how to thrive that we learn the lessons that few cardiologists, or others, have experienced or can fully understand.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 216.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 10:35
    Ira and Vic,

    Your comments about recovery voices my experiences after my quintuple bypass. The mental part of my recovery started on the day after my carotid surgery, a Saturday, when a cardiologist entered my recovery room with the message "We can perform your heart surgery tomorrow, Sunday, or Monday: your choice." Permitting me to enter the decision chain assisted my thinking I was part of the team. To trade one more day in Intensive Care for one more day in my new life, I chose Sunday, and spent Saturday thinking about how, if I survived, I could improve on my life's choices.

    Clarity of thoughts recurred rather quickly but during the sporatic physical recovery of breathing issues, I started thinking of my shrinking "world" as a potental learning experience. This brought up thoughts of how much Thoreau learned when he shrunk his world to Waldens Pond, and then extrapolated these lessons to the larger world. I started to see the beauty in small aspects of my former world, and even appreciate the Wyatts' painting of simple things like a window looking out at the world. Watching three legged dogs, wounded seals, and others, over come their handicaps inspired me to physically push a lie harder each day: opening my mind permitted my understandings of my surroundings t keep pace. I detail in my book how trips to Las Vegas, New York, Mexico and Malibu, each contributed to extrapolating my learning to my expanding world. My daughter said, "Dad, I am sorry for your heart problems. But if you had to have them, I wish you had had them sooner." 

    Brent Zepke
    Author "One Heart-Two Lives: Managing Your Rehabilitation Program WELL"      



    Original Message


  • 217.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 10:50
    Brent, while I would have preferred never to have experienced a heart attack, quintuple bypass surgery and medically induced coma followed by three weeks in a physical rehab facility, I do regard the fact that I dis experience these things as a great gift.  It has deepened my appreciation for every moment of consciousness that I am blessed to enjoy, narrowed my focus to the present moment to a degree I had never previously experienced, filled me with an ongoing feeling of gratitude to all of life and a connection to all of existence.

    So I know what you and your daughter mean.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 218.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 11:21
    Brent, just took a peek at your book. Will get. I think a number of people are hoping I'll hav that epiphany. 

    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 219.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 23:19
    As usual, excellent point, Vic. Candidly, recovery really concerns me. I've tried to read as many patient experiences as possible, but I am guessing I cannot even imagine what recovery will be like, even if I were to have no complications, which I suspect is rare. Or maybe not. I have no idea! After talking with you, you implored me on the importance of recovery. Then, the other day, I was talking with my local cardiologist. We set up an appointment for post-surgery. I mentioned I had to check my calendar (I run a small biz) and he went somewhat apoplectic, imploring me the importance of a stress free recovery. I welcome all advice and life experiences on this one.

    Herb


    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 220.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 05:01
    Herb,
    To expand on my earlier posting, three months after my surgery, I found out that my cardiologist had an emergency Aortic Dissection at a small city hospital about a half hour from my home. 
    I visited him and found a heart patient, like myself, asking the same questions I had asked after my surgery.  
    To this day remains my cardiologist and each time we meet for a consult, he mentions that having open heart surgery has made him a better, more empathetic cardiologist.  Ironically, few of his heart patients, know his prior history, as a open heart survivor.
    Vic Fabry 
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 221.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 09:07

    Great story, Vic. I suspect he was in that group that had no idea it could happen to them. I'm always fascinated by the story that the famous pioneering Houston surgeon, Dr. DeBakey, whom we all can thank for devising the surgery of aortic aneurysm repair – like the kind that ultimathis own life after he suffered a dissection. You can't make this stuff up.

    The irony of life continues to inspire me. All aspects of Dr. DeBakey's need for the surgery he devised and his own self-denial even though he knew what he was suffering – at the age of 98, no less – are remarkable: https://www.nytimes.com/2006/12/25/health/25surgeon.html

    Best,
    Herb



    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 222.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 10:27
    Herb,
    About 40 years ago, we moved into our new home in short hills.  Our community had  residents from many parts of the country and overseas many commuting to jobs in Manhattan.  One young neighbor about 35, told me he had heart surgery to repair a tear of his aorta.  His father was a doctor and he was flown in a private jet to St. Luke's Methodist Hospital in Houston where the special procedure was performed.  I don't recall the surgeons name but his surgery could have performed by DeBakey or Cooley.  He was an avid golfer and tennis player and I thought that's amazing how he survived such complex open heart surgery.
    Was this a premonition foretelling that I would follow the same path 30 years later? 
    Vic Fabry

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 223.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 09:56
    Herb:

    My local cardiologist and the nurse practitioner at CC were both of the same opinion that I needed to completely block out work during the immediate recovery.  Both mentioned that oftentimes people can be a bit foggy and not as sharp or 'normal' with decision making for a while.  Which was accurate in my case.  Honestly for the first couple weeks I didn't even care or think about work - it was work enough just healing and getting back home.  That being said, I started checking my work emails for 15-20m per day about three weeks after.  Just give yourself permission and space for recovery, and take what you need.  Once I told my staff & customers they were very supportive.

    Keith

    ------------------------------
    Keith Binka
    TX
    ------------------------------

    Original Message


  • 224.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 10:13
    Thanks, Keith. Of course, there are those who would argue I am foggy and not sharp pre-surgery! 😬 I fully intend to listen to my body and brain. I can't afford to do what I do in a daze. We are a biz of three people and my two colleagues and I have devised a plan for me to stay on the sidelines. The carrot I'm having dangled in front of me to take the recovery slowly is a planned trip 11 weeks out to NY for something biz-related I have been looking forward to. The surgeon's office says that by then, barring complications, I should be good to go. They say 10 weeks, actually. That said, I did buy travel insurance! Nobody can predict how any one person will, in reality, do. I'm opting to be optimistic until proven/told otherwise.

    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 225.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 10:37
    Just take your time recovering, Herb, and ask your surgeon or cardiologist to sign-off on cross-country flying 11 weeks post procedure.  Flying can pose some risk to heart patients soon after surgery, including DVT risk and risks associated with reduced oxygen levels.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 226.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2020 11:22
    Thank, Ira and will do. Their comments pre-surgery were 10 weeks. Obviously, everybody is different and nobody - starting with me - will know until I see how I'm feeling at that point.

    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 227.  RE: Aortic Aneurysm Support Group

    Posted 02-14-2020 12:41
    John, that's fantastic. All docs should do that! Never have heard of that and I've done a lot of searching for heart surgery pre-hab - found little. All my doc said was keep up the exercise! (I'm also doing modified "chair" squats and continuing work on the core in an effort to make aid in standing up from a chair. I hope I can report back here and say it was all worth it.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 228.  RE: Aortic Aneurysm Support Group

    Posted 02-13-2020 14:49
    John,
    The weight limitations would certainly be wise but my aortic aneurysm was not caused by lifting weight. The gym I use installed a new heavy bag and I began using 14 oz. training gloves. I began a routine hitting the bag increasing from 2, 3, 4, 5 minutes.  One morning after my workout, I had a retinal artery occlusion (loss of vision in left eye) which was diagnosed by a retinologist and later that day a echocardiogram found a 10.2 cm aortic aneurysm.  I met with the surgeon and  when into surgery 5:30 am the next day.  The moral of this story you must guard against any excessive straining, be it lifting, pushing or punching a heavy bag.  Email me at fvfabry@gmail.com
    Good luck,
    Vic
     

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 229.  RE: Aortic Aneurysm Support Group

    Posted 02-13-2020 21:37
    When I had my aneurysm, I was also told no excitement. Nothing that would cause your blood pressure to rise. For me, I was a child, I couldn't go trick or treating, couldn't go to a concert, school, etc. 

    As an adult, you know what might elevate your pressure so avoid those things. If the news aggravates you, turn it off. Don't argue with your mate. Keeps things in check. Let things ride. This is important, those things aren't. 

    Good luck to you. You will be fine. Stay positive and keep in touch. 



    Original Message


  • 230.  RE: Aortic Aneurysm Support Group

    Posted 02-13-2020 22:02
    Hello John Walters

    My surgeon told me in May 2019 that he did not want me out working in my garden at all, not carrying dirt, not digging up plants, not dragging items around as I do every spring, no raking, no shoveling but to sit on the deck and just enjoy the beautiful days until I had the surgery in August of 2019.  It was a very long 2 months but I did it.
    It is okay to just take it easy for a few weeks

    Good luck on your OHS

    M



    Original Message


  • 231.  RE: Aortic Aneurysm Support Group

    Posted 02-18-2020 12:29
    Hi - 

    I just got my CT results which says that I have a 3.4 cm ascending thorasic aneurysm and a 2.3 one in the descending thoracic aorta.  Can anyone tell me what this means and what questions I should ask my doctor?  I had a chest CT two years ago and there was no sign of this.

    Andrea

    ------------------------------
    Andrea Henderson
    Little Rock AR
    ------------------------------

    Original Message


  • 232.  RE: Aortic Aneurysm Support Group

    Posted 02-18-2020 14:09
    Hello Andrea

    After your CT results you will be assigned a Cardiologist or Surgeon depending on your Insurance rules

    I don't know what you know or don't know about Aneurysm Surgery or living with an Aneurysm

    In the next few days start writing down some questions ahead of time to ask your doctor so when you do get into the office you will have your notes with you

    My Aneurysm had never been seen or found after lots of surgeries, CAT scans or other tests for other surgeries.

    I had a whole body scan for cancer and that is when my aneurysm was found. 

    I wish I could help you better, perhaps others here can advise you

    M



    Original Message


  • 233.  RE: Aortic Aneurysm Support Group

    Posted 02-18-2020 14:24
    Andrea,
    The progression of an aneurysm varies so that growth rates are not always predictable.  I would be certain your cardiologist is very experienced with aortic aneurysms and can advocate if and when you require surgery.  It's wise to schedule an echocardiogram every 6 months and a annual follow up CT or MRI.  Heavy lifting, pulling, pushing and straining are associated with the growth of aneurysms, so these should avoided. 
    If you require surgery, get references and ask others to verify your surgeon is an expert in the field.  You can reach me at fvfabry@gmail.com with any questions.
    Vic Fabry

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 234.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 02:09
    Nice to meet you Victor. I've been debating whether to join this site and post something for a while but I have caved!

    My name is Jonathan, I am 36 years old. I had emergency OHS on November 22nd, 2019 to repair a 7.2 cm aortic aneurysm. I was completely asymptomatic and ordered to go to the emergency room after a CT scan revealed the aneurysm. I went in seeing my doctor for a cold and went to the hospital for emergency surgery. I was in the hospital for a little over 2 weeks. They were able to spare/repair my valve and replaced my root and arch with a graft. I'm on carvedilol, amlodipine, losartan, and aspirin post-surgery. My cardiac rehab will begin in late March, scheduling was hell and I could not get in earlier unfortunately. I've returned to work in Virginia just a couple days ago. 

    So, the reasons why I am posting is to become a part of the Mended Hearts community, but also because I am worried about some conditions post-surgery and seeking advice. I am not seeking medical or professional advice, but more or less seeing if others have experienced similar issues and what insight they might be able to share.  

    1. Upon my return to work, the first two days went great, but the other day, after walking rather quickly to a meeting, I stopped in front of the window and looked down at the floor for a second and all of a sudden, like something out of a movie, the building felt like it was tipping over. I immediately sat down, rested for 10 seconds, and was able to walk back to my office, the dizziness wore off in maybe 2 minutes. Is this normal? 

    2. Breathing is not always easy to come by. I am short of breath occasionally throughout the day. I find the spirometer helps a great deal. I was asthmatic and using an inhaler rarely pre-surgery but my symptoms are much more increased now. I can overcome the shortness of breath naturally, but the chest tightness forces me to use the inhaler at times. 

    3. I have an awful lot of sputum/mucus that I cough up in the morning and whenever I really exert myself. I can cough and spit it up but it is abnormal from my pre-surgery self. My doctor indicated to me that this was surgery-related, that I will have lots of built-up mucus from the ventilator, and that it should clear up in a couple of months. Is this normal almost 3 months post-surgery?

    4. I experienced gout maybe twice a year the previous two years pre-surgery, I had a gout attack each month post-surgery. Uric acid levels were high but the same as the previous years. Can this be medicine-related, possible stress from the surgery? I have changed my diet drastically since the surgery and lost almost 50 pounds. 

    5. Irregular heartbeat: Sometimes at night I will either 1. feel my heartbeat beat very fast and strong or 2. it will feel like I missed a heartbeat, the sensation is like being on a roller coaster ride right before the drop and your heart goes to your stomach. Doesn't happen every night but it is alarming. 

    6. When I was in the hospital and out of the ICU post-surgery, I was given, in my opinion, too much lasix and not monitored properly. This resulted in me passing out, waking up, urinating an immense amount, and having a neurological check. I was surrounded by nurses and doctors and asked a bunch of questions that I knew the answers to in my mind/brain, but I could not vocalize them correctly. They rushed me to do some testing (I forget what the tests exactly were) and thankfully ruled out a stroke or heart attack. They said it was severe dehydration. During this entire episode I had a lot of strange issues with my vision, it was almost as if it was going and I saw prisms or reflections of light as if I was stuck in a glass bottle or kaleidoscope. 

    6. Psychologically I am changed. Many nights I go to sleep wondering if I will wake up in the morning. Is this normal?

    Any insight on these issues would be greatly appreciated! Thank you!

    Sincerely, 

    Jonathan

    Original Message:
    Sent: 06-18-2017 10:53
    From: Victor Fabry
    Subject: Aortic Aneurysm Support Group

    Mended Hearts Community,
    30 days ago, I had aortic arch surgery at NYP Weill Cornell Medical Center to repair a aneurysm of the aortic arch. Although over 500,000 bypass surgeries are performed each year, less than 15,000 are aneurysm surgeries. 
    If you've been diagnosed with an aortic aneurysm or are survivor of aortic aneurysm surgery, I'd like to connect with you by email.
    Please include your age, year of surgery and if you completed rehab.
    Thanks,
    Vic
    Victor Fabry
    --
    Vic Fabry
    MHoMC, President
    Greylock Group, CEO


  • 235.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 08:58
    Good morning Jonathan

    It is so nice to meet you and read your note 

    I am 6 months out from surgery for a Aortic Aneurysm
    and have had many of the post surgical issues that you
    write about

    My Bronchial plate was damaged during the OHS and I too
    had trouble breathing, Surgeon assured me that the plate
    would heal, probably taking 6 months to a year, and I have just noticed that now I don't struggle for breath like I did early post op.

    I also had the irregular heart beats and had never had them pre op at all so they threw me for a loop.  I am on metoprolol and crestor and after requesting a hook up with a Holter monitor my surgeon says he does not see that big of a problem with the irregular beats.  I have cut back on caffeine and sugar and taken off the nicotine patch I was on after surgery and the irregular beats have decreased significantly

    Psychologically many of us are changed by OHS, no matter what type we have had.  Some have likened it to PTSD, and I would have to say that is true if you read here further and on the internet.  Many of us thought we were losing our minds and the conversations are very enlightening and healing, at least for me.

    Hope some of this helps, and that more of us will reply

    Have a great day Jonathan

    M

    Once we started talking about 



    Original Message


  • 236.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 20:08
    Hi Jonathan!
    Welcome to our little group! Congratulations on your successful surgery and recovery. You must have been stunned after getting your diagnosis when you went to see the doc for a cold.
    I had AA surgery January 31, 2019. After surgery I had some dizziness when walking, too, or when I got up from sitting to standing. I talked to my cardiologist and we adjusted medication. After that I rarely have that problem.
    What drove me crazy for over 6 months was hearing my heartbeat pounding in my ears when I tried to meditate or sleep. It finally went away and I have no idea why that happened!!!
    I still look back and marvel that I needed and had OHS.
    I pray that your recovery continues and you can look back like I do and say, “Wow, did that really happen?” Welcome to the zipper club!
    Andrea (Andie)

    Sent from my iPad


    Original Message


  • 237.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 10:57
    ​Welcome, Jonathan.  I can answer at least some of your questions.

    I did not have an aortic aneurysm, but I did have emergency quintuple bypass surgery two years ago as a result of a heart attack after a lifetime as a serious weightlifter, wrestler, gymnast and runner (and healthy eater).  I was 67 at the time and still quite fit and active, both in my athletic pursuits as well as professionally as a lawyer and as a poet and writer.  Due to inhalation pneumonia complications, I remained in ICU for three weeks, two of which I spent in a medically induced coma.  Upon my discharge, I immediately was transferred by ambulance to a rehabilitation hospital, where I regained my ability to walk, feed myself and generally become physically independent again.  I remained in rehab for nearly three weeks, before I was discharged to 3x per week outpatient rehab.  When I arrived home and walked through the front door, I kissed the wall, rather than the ground (as I would have done, like a character out of a Dostoyevsky novel, but for the sternal restrictions imposed on all of us to avoid bending down during those first few weeks post-surgery).  I returned to work around seven weeks later.  It took me a year and a half to return to my prior level of strength training.  A return to cardio fitness, however, was quite rapid.

    I also am hypertensive and take a baby dose of Lisinopril (2.5 mg) as well as 25 mg of Metoprolol 2x a day.  I, too, have a periodic dry cough from the Lisinopril, usually at the most inconvenient times, and it took a while for me to convince my wife that it was a side effect of the drug and not lung cancer.  I also take a statin (Atorvastatin 80 mg) and a low dose aspirin daily.  No ill effects, although I am ever concerned about the bleeding risk posed by low dose aspirin.  Still, the benefit outweighs the risk I suppose.

    When I first returned to work, I found that I was short of breath and sluggish sometimes while walking to the office.  I accepted it as part of the healing process and, sure enough, it went away after a couple of months. 

    I, too, suffer from gout, but it's severity and frequency don't seem at all related to my heart attack or OHS.  I have tried to modify my diet somewhat in order to lower my uric acid, but some of the healthiest foods on earth seem to be bad for gout and there is only so much that I'm willing to compromise.

    Psychologically, I too have change, dramatically, and for the better.  I have been a scholar of Eastern religion and philosophy since my undergraduate days and, for the past 37 years, I have practiced Zen meditation, but my heart attack, surgery and post-surgical complications deepened my understanding in a way and to an extent that exceeded the understanding I had gained through my prior experience.  I truly am at peace now and, though my priorities about what is important to me have changed, I have learned that this is all fine and part of my evolution, part of the evolution we all experience if we open ourselves to it.

    I wish you the best and hope you find this community as wonderful as I have found it to be over the last year and a half.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 238.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 17:58
    Jonathan,
    Congratulations on your successful aneurysm surgery last November.  The fact that your aortic valve was spared is a big advantage in the future.  My valve was replaced during the Bentall procedure in 2007 and will need to be replaced by a TAVR procedure over the next few years. I'll use relate to my own personal experiences to answer your questions.
    1. Dizziness that wears off after 2 minutes is not uncommon. I think your meds may be the culprit. Talk to your cardiologist about taking you off some of the unnecessary medications.  I did that about 5 months after surgery and he reduced my 12 meds per day to just 6 per day (one of which was an aspirin.)
    2. My breathing improved over the first 6 months with gradually increased exercise.  Since you are asthmatic and use an inhaler, your pulmonologist may be able to suggest a different medication.
    3. Coughing and bringing up sputum/mucus was never a problem with me so also discuss this with your pulmonologist. 
    4. I've never had gout but I've heard that  it's often caused by a poor diet.  Contact a nutritionist for advice.
    5. After a Bentall Procedure, an irregular heartbeat is common in about 50% of patients.  It's been almost 3 years since my surgery and I deal with A-fib most nights.  I've found lying on my right side helps. If it's occurring frequently, metoprolol (Lopressor) will calm the condition.  I hope my experiences will help you.
    Regards,
    Vic Fabry
    CEO, Greylock Advisors, LLC 

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 239.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 19:26
    Here's a question, Vic - what does afib feel like? Sounds like you personally live with it as an inconvenience, not necessarily turning to meds. Surgery this Wednesday. I'll likely know pretty soon here.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 240.  RE: Aortic Aneurysm Support Group

    Posted 02-28-2020 22:59
    Hi Jonathan

    I'm 38 and had what sounds to be the same/similar procedure(David Procedure) August 23rd. I too was asymptomatic but my aneurysm was 4.9-5.0cm so wasn't necessarily an emergency like yours was. I'm 6 months into my recovery and feeling pretty good now but went through some of the same things that you experienced.

    I would get exhausted, even dizzy sometimes when I did too much and would have to take a nap to feel better. I too was very short of breath and considering that I was in good shape before surgery made it harder to deal with mentally. My mind wanted me to just get up and go like always but my body wouldn't let me. My discharge plan had me walking daily and slowly increasing the duration of the walks. I started with 3-5 min walks a few times day and gradually worked up to 20-30 min long walks. Cardiac rehab helped me greatly but I was in the same boat as you, There was a wait to get in and I started later than most people do.

    I still have a sort of thumping heart beat that used to freak me out for a while. I was sure something was wrong and they were going to have to operate again! My surgeon assured me that everything looks perfect and what I'm feeling is due to having to open the outer sack around my heart to operate on it. It used to act as a shock absorber so I didn't feel my heart beating. Now that it has been opened I will be lacking that shock absorber. I feel it most when I take a deep breath but it dosen't worry me anymore(most of the time!). I was on a handful of medications and slowly was taken off of everything. Now i only take a baby aspirin a day.

    As for the psychological change, YES! Probably similar to you I went from feeling fine to having OHS. I wasn't prepared for the mental aftermath. The nurses told me if I had any new symptoms to go to the ER. EVERYTHING was a new symptom!! Everything that I felt I thought I was going to die or that something was wrong. It took some reassurance from my doctors at my follow up appointments for me to be able to trust that everything is ok. Now I'll be going about my business and realize that I haven't even thought about my heart all day.

    It has definitely changed my outlook on life among other things. I don't worry that I won't wake up anymore but I do wake up each day grateful that I am alive. We are given a gift that a lot of people don't get. We get to see first hand that tomorrow isn't promised to any of us and most people, as I did and still do sometimes, take things as simple as waking up in the morning for granted. The important thing for me is to not let that mindset slip away as it easily can and does some days. Hopefully tomorrow morning I will wake up and get to start working on an attitude of gratitude all over again!

    Thanks for posting because it helps me to see that people have experienced the same things as me! My phone number is in my signature, feel free to reach out anytime! Talking to others in the same situation has been very helpful for me.


    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 241.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 10:22
    OK, it's showtime. 

    Thanks to all on this board for pre-surgery support. Vic, thanks for starting it. Yesterday was the angiogram - easiest thing ever but they did find one blockage. That was a surprise to me and the IC team since I had aced the stress echo, which they say is 80% correct. While another procedure within the procedures that are scheduled is the last thing I need or want, I'm thankful that they found this before it found me!!! ;-)

    Pre-op is coming up. By this time tomorrow they should be close to wheeling me out, give or take the realities and uncertainties of surgeries.

    Head space is remarkably positive and relaxed.

    I will be sure to let you know how it went.

    Best,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 242.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 10:34
    ​Best of luck, Herb.  We'll be right here when you wake up.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 243.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 10:47
    Herb,

    Think positive thoughts, like how exciting it will be to open your eyes post surgery with another shot at this thing we call "life."

    Brent Zepke



    Original Message


  • 244.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 11:45
    Praying for you...remember you are not alone. 
    Andrea (Andie)

    Sent from my iPhone



    Original Message


  • 245.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 12:45
    All the best to you Herb....You Got This Herb....Give us a heads up when you are on the interwebs again...Prayers and Best Wishes Friend



    Original Message


  • 246.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 15:47
    Ira, Brent, Andrea and Mary - thanks very much. I look forward to filling all of you in on how it goes.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 247.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 15:49

    Dear Dr. Herb from Google U,

    Thank you for the help you have given me.

    Good luck tomorrow.

    My thoughts and prayers are with you for a speedy recovery.

    Best regards,
    John



    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 248.  RE: Aortic Aneurysm Support Group

    Posted 03-03-2020 17:16
    Everything will go well. You are in the best clinic with the best doctors. Very soon you will  be free from this weird feeling that you have a ticking bomb inside you and will get your life back. 
    Virtual hugs. Thinking of you Herb.

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 249.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 10:27
    Pushing forward with recovery.
    Pushing forward with recovery!


    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 250.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 10:42
    Welcome back, Herb!  And is that a scar I see peeking through the top of your gown?  Welcome to the zipper club!!

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------

    Original Message


  • 251.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 10:56
    Herb,

    I still hear Elvis singing:

    "Welcome to my world
    won't you come on in
    Miracles I hear
    Still happen now and then"

    He now is also singing to you.

    Brent
    Author "One Heart-Two Lives: Managing Your Rehabilitation Program WELL"





    Original Message


  • 252.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 11:10
    Brent - thriller to be on this side of it

    Sent from my iPhone



    Original Message


  • 253.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 12:26
    Hi Herb,

    So nice to see your smily face!  Hope your recovery will be fast. Very happy to see that your surgery went well. 

    Best,
    Elena

    ------------------------------
    Elena Del Prete
    Worcester MA
    ------------------------------

    Original Message


  • 254.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 11:16
    So happy to see you up and smiling and on the road to recovery.

    ------------------------------
    annette smith
    saxonburg PA
    ------------------------------

    Original Message


  • 255.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 11:26
    Hey lookin' good Herb! Best of luck to you on your recovery : )
    Michelle

    ------------------------------
    michelle leverett
    Ridgecrest CA
    ------------------------------

    Original Message


  • 256.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 11:32
    Looking great Herb!! That is a familiar view;)

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 257.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 13:23
    Herb: Looking great - you will be out in no time! That room view brought back some memories... Keith

    Sent from my iPad


    Original Message


  • 258.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 13:32
    woot woot woot.....so happy to hear from you Herb...
    Keep pushing forward friend, you are in my thoughts
    and prayers

    M



    Original Message


  • 259.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 14:33
    Herb,
    Congratulations! That's an excellent photo of a grateful post-op heart patient.  How are you progressing with your cardiac rehab; i.e., walking?
    Vic
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 260.  RE: Aortic Aneurysm Support Group

    Posted 03-08-2020 17:19
    Herb,

    Welcome back!

    You look great with that smile!

    That is fantastic!

    All the best!
    John

    ------------------------------
    John Walters
    ------------------------------

    Original Message


  • 261.  RE: Aortic Aneurysm Support Group

    Posted 03-09-2020 19:12
    Hi Herb! Glad to see you looking so good. Where are you? 
    Keep up the good work!
    Andrea (Andie) 

    Sent from my iPhone



    Original Message


  • 262.  RE: Aortic Aneurysm Support Group

    Posted 03-09-2020 19:27
    In Cleveland. Had a setback with an incidental finding in my prostate found on another scan. Otherwise the heart surgery recovery is going very well.

    Best,
    Herb

    Sent from my iPad


    Original Message


  • 263.  RE: Aortic Aneurysm Support Group

    Posted 03-09-2020 19:56
    Herb,
    Many heart patients are surprised by unexpected findings in X-rays, MRIs, CT images before or after surgery. Consider it good fortune to identify issues that would otherwise go undetected.  My surgeon found a shadow on my kidney in a pre-surgical CTA scan.  It was investigated and determined to be benign. I've learned  that about 80% of heart issues are found during routine tests for other health issues.  Stay positive.
    ATB,
    Vic


    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 264.  RE: Aortic Aneurysm Support Group

    Posted 03-09-2020 20:06
    I hear ya and good thoughts, indeed, Vic. This is an abscess on the prostrate. Ouch! Dr. Svensson has not seen this one before connected with heart surgery. They’ll figure it out tomorrow. A great team of specialists from all sectors, that’s for sure.

    Sent from my iPad


    Original Message


  • 265.  RE: Aortic Aneurysm Support Group

    Posted 03-09-2020 21:46
    Herb,
    You are in the best place to get it figured out. 
    They found some nodules in my lungs when I was going through all the tests!
    May it get cleared up quickly!
    You should be going home pretty soon, right? 
    Have they talked with you about cardiac rehab and where you will be going for it?
    Blessings!!!
    Andrea 



    Original Message


  • 266.  RE: Aortic Aneurysm Support Group

    Posted 05-17-2020 16:04
    Victor,

    You look so healthy and good in your picture I hope and pray that you have continued improvement.  My name is Bill I have Chronic diastolic heart failure (HCC) stage III (C), Coronary artery disease involving native coronary artery of native heart with angina pectoris (HCC), LVH (left ventricular hypertrophy) SOB.  I am unable to walk without having chronic chest pains and shortness of breath.  Do to my complex issues there is not a lot that can be done for me other than keep me comfortable until maybe if I can get an I'vad pump to give me a few more years.  I am having a difficult time I always thought I could have a surgery to fix me.  I keep searching but I think its time I come to terms with my disease.

    ------------------------------
    William Platten
    Retired
    N/A
    Alliance OH
    ------------------------------

    Original Message


  • 267.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 13:42

    Hi Guys,
    My name is Beth, I am 41 and live in Oklahoma. I found out last year I have 4.3 cm ectasia of my ascending aorta and a bicuspid valve with mild regurgitation. I was told surgery would be at 4.7 cm or if certain things on my valve indicate I need Surgery sooner. It was stable in February, but I went back for follow up ( to my cardiothoracic surgeon) in  August and it's 4.5cm. He said if it grows this much by this time next year we are looking at surgery. I have done so much research and I already knew if I had to have surgery I want to go to Cleveland clinic with Dr. Lars Svensson. I sent all of my medical information and I'm waiting for them to call me back for a second opinion.
    I found you guys last night and it was such a blessing to read about other people that are going through the same thing and are on the other side. 

    It's nice to meet you all. :)
    Beth 



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 268.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 16:11
    Beth,
    I'm glad you found the open forum and know other patients who have had ascending aortic aneurysm will be able to answer your questions about preparing for the surgery. The Cleveland Clinic and Dr. Lars Svensson's reputation are rated the best in the country.  Herb Greenberg, one of the open forum members had the similar procedure at the Cleveland Clinic earlier this spring. Herb would be an excellent resource to answer your questions about Cleveland Clinic and his pre and post surgery experiences.  You can email Herb at (herb.greenberg@gmail.com). Good luck with the second opinion from the Cleveland clinic and Dr. Lars Svensson. Maintain your positive outlook and look forward to a successful outcome. 
    Best Regards,
    Vic

    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 269.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 16:21
    Beat you to the punch, Vic - emailed Beth earlier. Would have posted it but was doing it from my phone and the site blocked me.

    Cheers,
    Herb


    Original Message


  • 270.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 20:02
    ��




    Original Message


  • 271.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 21:45
    Herb,
    Thank you for reaching out. I truly appreciate it very much. I have read all about your surgery and it gave me hope and reassurance.
    Thanks again!
    Beth

    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 272.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 21:46
    Vic,
    Thank you for the concern and the encouragement. I will post whenever I hear back from Cleveland Clinic.
    Thanks again!
    Beth

    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 273.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 22:02
    Hi Beth. As Vic said … Great choice on Dr. Svensson for a second opinion. He did my surgery 6+ months ago; I trust him implicitly. He is as
    Good as it gets. Feel free to reach out if you have any questions.

    Cheers,
    Herb

    PS - you may not have received my earlier reply; had an issue with the website.


    Original Message


  • 274.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 21:31
    Hi Beth - 44yo old Aussie that went through the same surgery in Jan for a 5.5cm aortic aneurysm and Bicuspid Valve replacement - 8 months on life is pretty much back to normal - you can ping me on the site or email direct tpurgacz@gmail.com anytime. I got amazing info from the community here

    I went Medtronic Freestyle valve and couldn't be happier with the decision

    Chat anytime
    Tim

    ------------------------------
    Tim Purgacz
    IT Analyst
    Australia
    ------------------------------

    Original Message


  • 275.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2020 10:10
    Hi Tim,
    I did my best to reply last night, but had no luck. Thank you for the warm welcome. I will take any advice/suggestions and I am so glad you are recovering nicely.
    Thank you!
    Beth Moon

    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 276.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 22:08
    Hi Beth,

    I'm 38 and had my bicuspid aortic valve and ascending aortic aneurysm(5.0cm) repaired in August 2019 at Cleveland Clinic. You are in excellent hands at the CC!! Everyone there is amazing and these procedures are routine for them. It is certainly no walk in the park but I was back to "normal" before I knew it.

    You have plenty of support here! I didn't know about MH before my surgery so I just spoke to some family friends that had been through OHS a few times a week  before and after surgery. Feel free to reach out via phone or email anytime!

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 277.  RE: Aortic Aneurysm Support Group

    Posted 09-22-2020 23:01
    Hi Cole,
    I found this sight last night and I am thrilled. I have actually been reading your story to my family (husband, mom, kiddos) because of the similarities. I am 41 with no health issues until this. It really gives me such encouragement. I have been positive, and then a wreck, and then positive..... I am trying so hard to walk in gratitude because I am so fortunate they found this. My surgeon here at OU says the optimal time for surgery is 4.7cm. I am curious what Cleveland will say. I am in shock because I was extremely confident last February when the said the aorta was stable. Can I ask how tall you are? I know that is a factor when they decide about surgery.
    Thank you for reaching out. I am so happy for you and your wife and your beautiful baby. It is a gift and I am glad you have a wonderful family to share it with.
    Thank you again for your story because it gives me hope.. 

    Beth Moon :)

    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 278.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2020 21:16

    Cole.
    I would appreciate receiving whatever knowledge you can offer. Let me know when a good time is and I will call you. 

    Thanks for reaching out!
    Beth Moon



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 279.  RE: Aortic Aneurysm Support Group

    Posted 09-25-2020 16:13
    Heard back from Cleveland Clinic-
    No surgery right now!
    He wants to see me in Cleveland in February and meet with a cardiologist, meet Dr. Svensson and do an echocardiogram, a CT and a breathing test.

    They gave me no specifics about the size or anything, but I honestly am okay with that. I feel like I got the most qualified person and asked his opinion.

    Thanks for all the support!

    Beth :)

    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 280.  RE: Aortic Aneurysm Support Group

    Posted 09-25-2020 16:37
    Beth,
    Congratulations. You are following the process outlined by the Cleveland Clinic.
    You are in the best hands, in the best heart hospital in the county.
    Regards,
    Vic Fabry
    CEO, Greylock Advisors, LLC 




    Original Message


  • 281.  RE: Aortic Aneurysm Support Group

    Posted 09-25-2020 16:42
    Beth, that's the protocol! I actually went back and forth with them for several years before Svensson said I should come it for a visit which, by the way, was last February! Had surgery in March when he looked at me and – in response to my suggestion that maybe we could do it in August, after my daughter's baby was born – he said, "I would do it soon." And we did!




    Original Message


  • 282.  RE: Aortic Aneurysm Support Group

    Posted 09-26-2020 11:01
    Thank you for all the feedback and support. I have done so much research, but relationships with people that have gone through this is incredibly helpful. I am going to do my best to relax until February and trust that I have the best doc on my case.
    Thanks again!


    Original Message


  • 283.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2020 18:28

    Hey Herb,
    I have a couple of questions of you don't mind. 

    There are so many tests before I see Dr. Svensson. Does Cleveland Clinic run on time for most of those?

    Do you think it's significant that he wanted to see me so soon?

    Also, were you able to take someone with you to the appointments? Covid has put a kink in a lot of things.

    Thanks Herb!
    I am so thankful for all your input.

    Beth



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 284.  RE: Aortic Aneurysm Support Group

    Posted 10-04-2020 22:30
    Hi Beth:

    All but one of my 15+ Cleveland Clinic appointments over three separate visits were within five or so minutes of the scheduled time.  The one exception was about 45m late, but they worked out the resulting conflict easily.  I was in Cleveland for my six month post surgery follow up at the end of July, and their COVID protocol at that time did not allow for visitors except for a few special cases.

    You are in good hands there - we were at ease and realized how good they really are very quickly.  I had BAV replacement and ascending/arch aneurysm repair - going to CC was the best decision I have ever made.

    If you haven't already seen them, there are a couple of YouTube videos that really helped me - Dr Roselli was my surgeon.




    Best wishes, happy to discuss my experience in Cleveland at any time.

    Keith Binka

    Sent from my iPad



    Original Message


  • 285.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 08:02

    Keith,
    The videos links you've included would be valuable and reassuring to anyone scheduled for an ascending aortic aneurysm procedure. The descriptions provided by Dr. Roselli and Dr. Svensson are outstanding.
    Thanks,
    Vic Fabry




    Original Message


  • 286.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 08:12
    Vic, +1 your comments on those videos. I had not seen the second one, which is exceptional.

    Keith, great to hear you are doing so well.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 287.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 11:50
    Hi Keith!
    Thank you for the great video on Aortic Aneurysms. I had my repair done January 2019 at Scripps, La Jolla. I was not a smoker, no connective tissue disease, no health issues. It was found when they were looking at other things. My younger brother has one, too.
    Andie (Andrea Broding)

    Sent from my iPhone


    Original Message


  • 288.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 16:16
    Andrea,
    I'm glad to learn about your successful procedure and recovery.  Based on the fact that your brother also has been  diagnosed, this may indicate you have a connective tissue disorder (also called marfans syndrome). You should discuss this your cardiologist and share any information with your brother.
    Regards,
    Vic 
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 289.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 16:45
    Sent from my iPhone


    Original Message


  • 290.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2020 18:03
    My doc checked me out, and he says no on Marfans. 

    Sent from my iPhone



    Original Message


  • 291.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2020 10:15

    Forgive me if I am not posting the right way because I am having trouble. 😂
    One question,
    I was looking over my last surgical visit report and the doc mentioned having measured the length of the Aneurysm. He said mine was right under 11 cm and noted that risk of dissection increased once it hits 11 cm. He never mentioned this to me in our visit, and it is so hard to find any literature about it. 

    If you don't mind, let me know if any of you have heard of this. I believe I found one good case study about it.

    Thanks,
    The newbie,
    Beth :)



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 292.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2020 14:58
    Hi Beth,
    I have not heard of that number (length) being given out before. I was given a size, and that's it. 
    It is harder to find information on aortic aneurysms. 

    Andrea



    Original Message


  • 293.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2020 08:47

    Andrea,
    Thank you for reaching out. This is a great community and i am fortunate to have found you all.
    Beth :)



    ------------------------------
    Beth Moon
    OK
    ------------------------------

    Original Message


  • 294.  RE: Aortic Aneurysm Support Group

    Posted 09-23-2020 15:04
    Hi Vic,
    I had an AA in January of 2019.  I went through rehab after surgery, at Scripps La Jolla, CA. It was a great experience. Now, with COVID , they have had to change how they do rehab. Some of their classes are on a zoom format. For a while, they were having people come into the gym at appointed times. Previously, it was set up so a person could just come in between certain hours. I am not sure what the program looks like right now, because the conditions keep changing.

    How are you feeling? I hope you are recovering well. 
    email me if you have any questions: andreabroding@gmail.com


    ------------------------------
    Andrea Broding
    School Psychologist Retired
    Santee CA
    ------------------------------

    Original Message


  • 295.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2020 04:50
    Hi Beth same as Andrea I've never heard anyone mention the length of the Aneurysm although I can see why that might be an important factor (I did more reading on the topic than I care to imagine so it is odd to hear it from you for the first time) I had absolutely no history of any issues and an episode of AFib (related) was the warning sign - then the month waiting for surgery (I got the Dx right before Christmas) was the worst part so I know where you are at

    So try to limit the stress and definitely knowledge is power

    Hopefully your down the track on deciding on metal vs tissue valve etc - I again did so much reading but it didnt take too long for me to work out the modern tissue valves are the go. Please stay in touch all the way through the journey - I have neglected to stop back into the Mended Hearts community - Covid and a 4 and 2yo have kept me busy - but having you reach out brings me (and the rest of the crew) back

    So fire away anytime
    Tim

    ------------------------------
    Tim Purgacz
    IT Analyst
    Australia
    ------------------------------

    Original Message


  • 296.  RE: Aortic Aneurysm Support Group

    Posted 09-24-2020 11:02
    My wife had an ascending aortic aneurysm repaired in March. It had grown to the 5 cm level and need to be fixed. It was more severe than most, because the whole aneurysm was off to one side, rather than concentric. Her repair was minimally invasive and involved two separate “repair pipes”, because the aneurysm was near the Y pipes.
    With these kinds of repairs - unlike cardiac stents - can tend to leak. She went back in in August and the Interventional Radiologist went through the groin aorta up to the leakage area and installed very tiny coils into the leaks (5 or 6). It only took about an hour or so, but she had to take about a week off for recovery. All is well. Strike while the iron is hot!
    Joe Jansen Ft Myers


    Original Message


  • 297.  RE: Aortic Aneurysm Support Group

    Posted 12-21-2020 21:54

    Vic,

    52 year old male, and  I just had OHS a bit over 7 weeks ago to repair an ascending aortic aneurism caused by a bicuspid aortic valve that I was born with. Surgery went smoothly, and I was out of the hospital after 3 days. Recovery has gone very well. My cardiologist told me that since I do have a bicuspid aortic valve that my aorta is weakened. She told me that I wouldn't be able to lift above 55lbs after being fully recovered. My surgeon however told me that my aorta showed no signs of weakness, that another aneurism forming in the future would be unlikely, and that I would be able to continue to lift weights as normal. I thought one of them isn't correct with their assessment. I was inclined to believe the surgeon more as he specializes in aortic aneurism surgery, and seems very knowledgeable. I have decided to get another opinion from another cardiologist to see if they agree with the surgeon or my current cardiologist. I had also shared with my surgeon what my current cardiologist had mentioned, and he said he would talk to her. 

    Take Care,

    Scott Woodward



    ------------------------------
    Scott Woodward
    ------------------------------

    Original Message


  • 298.  RE: Aortic Aneurysm Support Group

    Posted 01-05-2021 21:08
    Hello, it is so encouraging to read these stories of you all overcoming aortic disease. I have known of my bicuspid aortic valve for several years now, and I have just learned from a recent MRI that my aortic root has grown from 3.0cm two years ago to 3.9cm. My ascending aorta is also on the larger side of normal, but not growing as rapidly--just 0.2cm. While 3.9cm is still very small as far as aneurysms go, I am 32. I am a bit frightened by the rate of change as well as the prospect of OHS in my thirties. I am a mother to a young child and enjoy a very active lifestyle. Even if surgery is still years away, there is this new fear of my heart as a ticking time bomb. I have seen a few others mention this--how did you go about your day to day living with this in the back of your mind?

    I have an appointment with my cardiologist to do a stress echo and discuss the findings next week. I am glad to have found this forum to read stories. It is so encouraging as I begin to process the road ahead of me.

    ------------------------------
    Andi Jade
    ------------------------------

    Original Message


  • 299.  RE: Aortic Aneurysm Support Group

    Posted 01-05-2021 22:08
    Forgive the duplicate post... I had written the first one yesterday, thought I lost it, and wrote another one. 🙃

    ------------------------------
    Andi Jade
    ------------------------------

    Original Message


  • 300.  RE: Aortic Aneurysm Support Group

    Posted 01-05-2021 21:09

    First off, it is so encouraging to read all these stories of people who have had this and been successfully treated. I just turned 32 and learned my aortic root is dilated 3.9cm. This is still small so I feel fortunate in that regard. But this is up from 3.0cm two years ago. I have known of my bicuspid aortic valve since 16, but my echos were always stable so I had no concern. Recently, I had chest pain, which prompted a visit to my cardiologist. An MRI revealed this new dilation.

    Of course the rapid unexpected increase scares me. An aneurysm in my thirties was never on my radar. I have a 3 year old and am very active.

    Follow up with cardiologist is a week out still. I am certain he won't recommend surgery, however everything in me wants to fix this right away so I don't spend my thirties worrying about a time bomb in my chest; it will always be in the back of my mind. Hoping that sending this message out into the interwebs calms my nerves until my appointment.



    ------------------------------
    Andi Jade
    ------------------------------

    Original Message


  • 301.  RE: Aortic Aneurysm Support Group

    Posted 01-17-2021 12:29
    Hi Victor,
    First of all let me thank you for starting this forum. I have recently been diagnosed with aortic aneurism of the ascending aorta (4.2 cm) and 4.4 cm at the root (note I am only 44 years old and in not too bad shape however my BP went from 120/80 a year ago to 160/100 and this is how we discovered my aneurism). I am seeing my cardiologist next month. I did not handle the news well and I have been struggling to cope with my diagnosis considering the fact that I am the only one working and I have 3 very young kids. This forum has helped me quite a bit. I know the threshold for surgery is 5.5 cm (don't think I have any other genetic conditions) however I am still scared. There are couple of things that I would like to find out:
    1) Is there some type of statistics of yearly growth of aneurism like mine (I know it is individual but they use a lot of statistics in medicine)
    2) Any clinical research or trials for therapeutics for this kind of disease?
    3) If you end up in surgery what is life after, how often do you have to do checkups after a surgery, how much time until you get back to "normal" if ever. (Victor I know you gave us info on this but still asking).
    4) I was planning to move abroad to a more rural area should I not consider this now that I have this condition (since access to hospital might be hard).
    5) Between the ages 24-30 I was very active in terms of lifting weights and running. Is it possible that I have triggered this aneurism with those activities and we are just finding out.
    Any comments are appreciated, I am a wreck right now since I have not had any big medical conditions to deal with ever.
      ​

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 302.  RE: Aortic Aneurysm Support Group

    Posted 01-17-2021 16:26
    Goran,

    Vic certainly has quite a bit more experience than I do because I merely had part of my ascending aorta replaced last March along with my aortic valve and root. He is the grand Pooh-Bah.

    Regarding your questions:

    1. You won't get a straight answer because there is none. Everybody's is different. Some grow fast. Some slow. While I have been scanned with regular echos for decades to monitor my valve, it wasn't until 2013 that a cardiologist recommended a CT baseline. I was at 4.6. Needless to say, hearing the word "aneurysm" I freaked out. It's normal. But the more I researched and learned the more I realized that the diagnosis of an "aneurysm" wasn't a death sentence – the furthest thing from it. The important thing is to start monitoring. By the time I had surgery in 2020 I was at 4.9 – and even THEN my surgeon at the Cleveland Clinic wouldn't have operated if my valve hadn't hit the point of "we had better do this soon." Let's just say, you are like not sitting there with a hose that is about to explode. There are some very good videos on the Cleveland Clinic's website regarding aneurysms and the risk of breaking. One is by the surgeon Eric Roselli, who wasn't my surgeon. You can find it on his profile page on the clinic's website; just click through to his videos. He really explains how aneurysms work, the risks vs. general population, etc. Cleveland usually operates at 5.0; they do so many they feel the risks outweigh the rewards at their facility at that measurement. American College of Cardiology, and the American Heart Association also publish guidelines, which you can find online.

    2. There are experiments for non open-heart aneurysm surgery, but still controversial.

    3. Life after - fantastic. I was pretty much back to my old self (I was 67 at the time) within 2 months - that is, with full exercise. You don't exit the hospital a vegetable. Let's put it     like this: If it wasn't for the fading scar on my chest I wouldn't know they had done a bunch of things inside. I'm almost a year post-surgery and I last saw my cardiologist in September- will seem him again next June. I saw him several times after my surgery in March. And FWIW - before my surgery, I was getting scanned alternating between an MRI (no contrast) / echo every three months. I call that the every-three-month scan plan. Before that, it was six months. When I was like you - and didn't even realize I had an aneurysm – 1x a year...and that was for my valve.

    4. Your call. Depends on how long you were planning to be gone. I'd talk to your cardiologist first and then get a second opinion. A third, if that will help you.

    5. Others here are weight lifters and can respond. Highly unlikely running was a factor and, in fact, likely helped keep the rest of you healthy. At certain sizes they definitely say, "no heavy lifting." I was advised to keep actively exercising until the day of surgery. In my case, that meant several miles of very fast walking. (I gave up running years ago...b/c of my knees.)

    The part of your story that puzzles me is the high blood pressure. I can't believe an aneurysm would cause that, but then again my medical degree from Google U is not worth the paper it is written on. Maybe you have a valve issue? 

    Regardless .... everybody here has gone through this and we're here to tell you to stop freaking out. We're like cars and at times we need to get fixed. This is a "fix" not like cancer, which is a treatment. You'll be okay. Nobody can predict the outcome of surgery but the odds are on your side. Repeating what I said earlier: Key is to monitor it. Vic and others are likely to weigh in with their informed views, as well.

    Best,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 303.  RE: Aortic Aneurysm Support Group

    Posted 01-17-2021 17:32
    Herb,
    I have a AAA around 3.8 to 4.
    last yr was my first scan. They found it incidentally on a heart scan for plaque. No plaque but an aneurysm...surprise!!!
    i found a top notch surgeon. 
    It measured 3.8 last yr.
    i just had another scan and the report read approx 4.0
    AAA and my main pulmonary artery is about the same size.
    I don't have high blood pressure, its very controlled with Losarten. It runs about 120/73
    I don't have a valve issue either. 
    My surgeon said aside from the aneurysm my heart is in great shape. 
    I'm expecting his call this week about the scan.
    he was out of town last week.
    I'm wondering whats causing the pulmonary artery enlargement.
    I really don't worry about the aneurysm. I rarely even think about it. I know its being monitored and I have a great surgeon. I do thank God that it was found.
    its the ones that are not detected that are scary.

    ------------------------------
    Roni Marie
    IN
    ------------------------------

    Original Message


  • 304.  RE: Aortic Aneurysm Support Group

    Posted 01-17-2021 18:35
    Roni,

    "The ones that are not detected." Bingo!!!

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 305.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 05:46
    Hi Herb,

    Thanks a million for replying to my post. I found it very helpful to hear it from the people that have gone through this. I am still recovering from finding this out. The thing about the blood pressure is that is how they discovered my aneurism. I went to the doctor to see why my blood pressure is not up to par. The good (and bad) thing that the EKG did no look too good so he sent me to a cardiologist that was excellent and he discovered my aneurism. Otherwise I would just have gotten the blood pressure pills and off you go. I suspect I had this for a long time and tracing back my steps it might have started when I was 24 and lifting very heavy weights (they always tell you when lifting to watch your back but nothing about the aorta). Right now I only do fast walking and some light skiing (not sure about this one). But still I have a couple of questions for you:

    1) You had your surgery done at the Cleveland Clinic which is an excellent place, but you leave in San Diego. How long did you stay in Cleveland after the surgery and did you do your rehab there. How long until you could fly back?
    2) Do you have any restrictions after surgery and are you on any medications for the life time?
    3) I see you do a lot of follow ups after surgery which is normal after any surgery, but after lets say a year or two do you have to keep on following up or like other surgeries after a year or two you are done once they determine this is a success. 
    4) Is the graft that they implant good for life or has an expiration date?

    I know some of my questions are not the best but I am trying to learn as much as possible. I was hoping to retire in 10 years in some remote rural location in the tropics so I am trying to figure out if that dream is over after a surgery like that.

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 306.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 12:14
    Hi Goran:

    1. This was immediately pre-Covid. Lots of folks go to CC from other places. We stayed 14 days, I believe. Arrived on a Sunday, tests Monday and Tuesday, Surgery Wednesday, left the following Saturday. They like you there for at least 10-days post-surgery. I didn't really do rehab. You start walking a few days after surgery and then just follow their protocol. Rehab was closed when by the time I got back. Some people start rehab at 4-6 weeks, many at 8 weeks. I just started walking at home and when to Rehab several times after it opened...I thin it was 3 months after-the-fact, just to get monitored. At that point I was well beyond what it could offer. I want to stress something: You will not be a vegetable. I had this vision of me hardly able to do anything. If you are healthy going in, you will be healthy coming out. Just a bit slower. You will be stunned how fast your body recovers.

    2. No restrictions, tho I'm sure if I was a weight-lifter there might be some. But the weight-lifters here can "weigh" in. I took BP meds before surgery for many many many years and will continue for the rest of my life. I'm actually on a bit less than pre-surgery, but not by much. It's not a big deal - like brushing your teeth. 

    3. You do a few visits post-surgery, and then I think it's 1x a year...to get at least an echo. Depending on your situation and what they recommend, I think an echo 1x a year is important - especially after having had a new valve. You need to keep watching that forever. Again, not a big deal.

    4. The Dacron grafts are supposed to last a lifetime. I'm sure there are some experts here on that.

    Like I said, I would never know I had surgery if it wasn't for the scar. At some point, hopefully 10+ years from now, I'll start slowing again if/when my valve starts to decalcify and degrade. Until then, I have more reserve power when I exercise than I have had in years...and I thought I was asymptomatic. Again, without a valve issue, you may have a very different experience.

    Continue to ask questions and don't hesitate to reach out.

    Best,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 307.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 13:20
    Hi Goran and fellow AA survivors!
    I am not an expert, and can only tell you about my experience.

    My AA was found when I was 61. I was very active; kettle bells, swimming, yoga, walking. I was working full time. My blood pressure was borderline; but I was feeling some discomfort in my chest. My GP said it was probably muscular, but decided to do a heart work up; due to my age :)
    That’s when they found the aneurysm.
    He immediately referred me to a cardiologist. I went through all the tests; it was in the 4.0 range. Typical blood pressure medication and no more kettle bells.
    I laugh when I recall that after that I went to Spain and walked part of the Camino de Santiago; some days I walked 18 miles. Doc said ok as long as I trained properly.

    Every six months they retested me; when the aneurysm got to 5.2 they scheduled surgery. When they got in there it was more like a 6.0 plus. I had the surgery at Scripps La Jolla; was in an out in less than 4 days. That was January 30, 2019. The surgeon told me the Dacron graft would not need to be replaced; taking baby aspirin to prevent clots because it is a prosthetic.
    I had excellent care from start to finish. I have a very thin, light scar.
    I am feeling great! I walk at least three miles a day, and swim laps outdoors at the YMCA three times a week. I garden. Do yoga. A little weight lifting. I finished all my sessions of cardiac rehab and got the t-shirt :).
    I retired after my recovery; that was my plan before I found out about the AA.
    I didn’t have any valve problems, just an ascending aortic aneurysm. I have a friend that barely made it to the hospital with an aortic dissection. She has had complications from it so I am a strong supporter of “get in there and get it done”.
    The cardiologist has me take blood pressure readings and blood tests. I only see him once a year now.

    Many blessings to you for a healthy recovery.

    Andrea “Andie”





    Sent from my iPhone


    Original Message


  • 308.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 14:49
    Hi Andrea and Herb,

    Again thanks a million for answering my questions and the support. I have 3 young kids and I am 44 years old and the whole family basically depends on me so it is a very hard time. I did most things right in life including exercise so I would have good health. Health is something I did not have to worry about in a long time, but as they say "Sometimes you do everything right and things still go to hell".
    Questions of course:
    Andrea: How long did it take for your aneurism to grow from 4.0 to 5.2?
    Andrea: Is aspirin a must due to the graft? 
    Herb: Your follow up visits after surgery, do they have to be done at CC (or where you go your surgery) or your local cardiologist can do those?
    I was also looking into CC for this type of surgery even though Manhattan is 5 minutes drive from where I live and they have a bunch of hospitals there as well. Any particular reason for choosing CC over any other hospitals. 
    Thanks

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 309.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 14:56
    Goran,

    I had all of my follow-ups in San Diego at Scripps (where Andrea goes.) That's where my cardiologist is. The handoff was flawless. 

    As for NY - if Vic weighs in...he knows the lay of the land there VERY well, and I'm sure will have some very strong opinions. The type of aortic surgery he has have or will have makes what I had or you will have seem like child's play.

    Best,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 310.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 15:02
    One other thing, Goran: Since you live so close to NY - and because you have a young family - you should certainly consider NY. Cleveland is amazing, but it's an ordeal. They require one pre-surgical trip of an assessment and tests - at least my surgeon did, and he runs the place. (Again, that was pre-Covid.) Depending on your budget, there are plenty of places nearby to stay. We stayed at hotel adjoining the clinic that can be accessed by a skyway. However, if I had a young family I very likely would have stayed local or perhaps no further than LA. In this case, a huge draw for us beyond the surgeon, CC's reputation, etc., was the connecting hotel, which was very important for my wife.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 311.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 16:13
    I live in CLE.  The Clinic's excellent cardiac reputation is well known.  However I am not a believer in their "not" for profit status so much.  And it's not as perfect as some would  have you believe. 
    I was an emergency aortic dissection surgery patient a few months back.  It's location and parking hassles made visitors minimal understandably (and they CHARGE for parking).  There were some good nurses (jeff cope being one) and some not so kind.  Where one would hope and expect compassion I didn't necessarily receive it in light of my difficulty swallowing pills.  I was happy to get home and trash the heart pillow and water tankard with their logo. 
     
    Most often I was visited by nurse practitioners.
     
    I was bullied into consenting to going to a rehab facility.  HUGE mistake.  Awful pick on my part....That was not their fault.  But I was discharged with a stack of Rx with no explanation or discussion.  Also a stack of follow up appointments without my knowledge or consent.  This made  me SO angry as it was SO disrespectful IMO, I cancelled pretty much all of them.  More recently I reconsidered canceling one with the surgeon who apparently saved me, and rescheduled it.  There was no sensitivity to my concerns about the contrast used with a CT.  Contacting the office a very kind nurse got back in touch and reported per the MD, that without contrast I may not as well come in for the appt as there would be nothing to discuss.  Most of the appts must be at the main campus which is a hassle factor,  Driving directions are poor that they provide.  So the commute becomes a stressor as well. 
     
    So I followed all the directions, got there had the damn tests done.  Was checked in at 1 PM for 1:30 with the MD.  Then it was 2, and 2:30.  Going on 3 PM (not having eaten and been there since 10 AM as required) my friend heard my name; I go to the desk and I'm told I can "go home" as the visit can be done virtually!! NO APOLOGIES, NO REASON, NO RESPECT for patients, their lives.  Aside from the outstanding nurse who hung in there with me for CT process, bless her.   Wasn't even given a business card for the surgeon, a post it with a phone number to call to set up virtual appt (yet to do it).  OH GUESS WHAT!  They actually just called to set up the virtual appt! 
     
    Anyhow just beware.  ANd if you aren't well enough to be an advocate for yourself, make sure you have someone with you who can be. 
    r rosner
    cleveland, oh



    Original Message


  • 312.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 16:58
    Hi Robin,
    Thanks for sharing this is why I love this forum, it has helped me quite a bit especially when people share their own experiences. I have heard that CC is excellent but a little cold and it appear that way. 

    Hi Herb
    thanks for your advice I did not even considered how much of a hustle would be for everybody to have this done far away. I am still gathering information on what to do.

    Hi Andrea
    I also have a slight feeling in my left peck (close to my neck) which I always thought it is muscular. I also mentioned this to my doctor years ago but he also discarded this. If my blood pressure did not go nuts this past couple of months I would have never known that I have this. 

    Surgery is not my comfort zone and it looks like people had good experiences.

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 313.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 17:24
    Robin and Goran:

    Re CC: I found the folks who handle reception to be the least friendly, but once behind the doors almost everybody was extremely friendly and top-notch. The ICU team was remarkable and once in step-down the first nurse, not so much. I mentioned it to surgeon's nurse practitioner and – presto! – I was switched to a new nurse who was fantastic. In fact, most of the nurses during my 8-day stay were exceptional. I definitely saw more nurse practitioners than my surgeon, whom I saw every morning. But they were great and handled the more routine issues. I don't think there is a hospital anywhere that is perfect - not everybody likes there job –  but most of what I heard and read about CC from others was that it was a machine, but it a good way. That summed up my experience. There was a protocol, they followed it. And as you waited for tests (not long, in general) you sat there with all sorts of people from all walks of life - some scared, some excited, some angry. I flew to Cleveland for 1) a specific surgeon and 2) its reputation.

    Robin clearly had a different experience; being local and an emergency may have been part of that. I can only imagine the anger of having had that happen and have your life flipped upside down.

    Robin, I also think that what happened to you is without question the scariest thing of all. As you know, most people who have dissections don't make it to the hospital and those who do - a larger percentage never get out. (One of my brother's relatives was in the latter camp. He got to the hospital, had successful surgery by a world renown surgeon and died the next day.) I would say you were very lucky to live near such a great heart hospital. Also, if you haven't already done so, I hope you filed your grievances with the patient advocate there - they definitely have a department for that. 

    None of this is easy, even in the best of circumstances. I agree with your comment about having an advocate with you, if you can. Definitely makes a huge difference. Sounds like you had a lot to handle, possibly much of it on your own. That's a challenge, for sure.


    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 314.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 08:38
    Goran,
    I am gratified at the number of responses to your posting by herb, Andrea and Cole.  Since I have had recent experience with OHS at NYP Weill Cornell Medical Center, I will add my comments to those already posted. Although Cleveland Clinic is considered the best heart hospital in the US, there are other considerations when making a selection of the medical center:

    a. Although the pandemic has changed visitation policies for all hospitals, access for you, your wife and family should be an important consideration
    b. NYP Weill Cornell Medical Center on 68th Street and First Avenue is rated the third best institution for OHS in the country.
    c. Dr. Len Girardi, is Chair of Cardiovascular Surgery at NYP Weill Cornell Medical Center.  He should be your first choice if you chose NYP
    d. You're need to arrive at the hospital one day prior to surgery and remain from 6 to 10 days post-surgery
    e. You'll need to return to the hospital at least once 30 days after the procedure
    f.  Town car transportation to your hospital is considerably better that any airline 
     
    If you have specific questions, include them in an email at fvfabry@gmail.com
    All the Best,
    Vic Fabry



    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 315.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 09:46
    Hi Goran,
    I hesitated to answer because my TAA and bicuspid valve hasn't been fixed yet. I am 41 and found out about mine A year and a half ago. Mine was initially 4.3 cm and my cardiologist sent me to the surgeon who said they wanted to do a mechanical valve and  aneurysm repair at 4.7 cm. He also said not to panic because maybe it's been the size my whole life. The first six months there was no growth and then the second six months it grew to 4.5 cm. I have forwarded all my info to Cleveland clinic and for the time being they said no surgery, but that they want to see me in February.The policy Cleveland clinic right now is no visitors with you at an appointment, but I asked special permission if my husband can at least be here for my surgical appointment and they complied. I don't know how much help I can be but I just wanted to offer you my story. For me there have been a lot of ups and downs, but I found this group after my aneurysm grew again and they have been most helpful. I'm choosing to look at this with gratitude that God must love me so much to let me know about this, so I can be here for my husband and kids. :)
    It sounds like you're doing all the right things. Best of luck to you and I'm here if you have any questions. 
    Beth 
    Oklahoma 
    Sent from my iPhone



    Original Message


  • 316.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 11:33
    Hi Vic,

    Thanks for the doctor referral (Dr. Len Girardi). It is actually fairly close to where I live and it might be better than flying to CC. Again many thanks for starting this forum. It has helped me quite a bit to deal with this.

    Hi Beth,
    Thanks for sharing your experience as well. I did not expect that I will have this at 44 since I tried to leave healthy and exercise however I think I might have done some damage by lifting heavy weights when I was young. 

    I wish they had a better option for this than OHS but at least it is an option.

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 317.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 11:54
    Goran,
    They found my aneurysm first and because I’m not older or have any health Conditions usually associated with an aneurysm they went ahead and did the echocardiogram. That’s when we found out I had the bicuspid aortic valve, which has caused my aneurysm. I also Was referred to the genetic doctor and tested negative for connective tissue diseases.
    I assume you have been checked with echocardiogram too?
    Keep us posted!

    Beth


    Original Message


  • 318.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 14:03
    Totally agree about access for family/friends.  It's a time when you need the comfort of them, covid or not.  The more libearal/open the policies the better.  ALso, learned this lesson decades ago, and it has served me well as little as I travel...but always (try) to stay at a place that has 24 hour room service.  This is an indicator that a hotel has a full staff and will have help on hand should you need it.  These days more often than not you only have until 11 PM, which is better than nothing.  Also be aware of your surroundings.  The area the Cleveland CLinic is located is not a place to go walking at night. 
    robin rosner



    Original Message


  • 319.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 15:15
    Goran,
    Here's some additional considerations about Ascending Aortic Aneurysm surgery:
    1) Growth of an aneurysm varies so widely that regular six month echocardiograms are the rule.
    2) Clinical research into the causes of aneurysms focuses first, on family history of any connective tissue disorder (Marfan's Syndrome). Second, excessive blood pressure caused by physical exertion.
    3) After a 30 day post-surgery follow up with your surgeon, checkups will be every year.  I was 85%  back in six months and 95% after one year.
    4) I would caution you about moving to a rural area either here or abroad. Access to the best heart care is a important criteria, that you should not be without.
    5) Weight lifting puts tremendous stress or your heart, valve and aorta.  Running is a recommended alternative. I power walk 22 miles a week at 17-18 minute miles. Is it possible that you triggered this aneurism with weight lifting but safe alternatives include running, swimming, tennis and walking. ( I don't consider golf an exercise, it's a game :-)
    6) Find ways to reduce stress in your life, whether it's from your job, career or travel, should be a goal.
    All the best,
    Vic Fabry

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 320.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 15:35
    Perhaps in time they might take into consideration the impact of emotional/mental stress or specifically who among patients are caregivers.  In my case a major source of my stress is probably my perfectionistic tendency and being the only family in town to care for two elder parents, one of whom is going on 104 and is active and healthy (though he did have a bypass in his 80's and got a pacemaker just after turning 100) and the other who has a challenging personality and dementia who is 98.  Who needs cardiac rehab when you have that LOL? 
    robin rosner



    Original Message


  • 321.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2021 16:05

    Vic,

    Also wanted to make it known that some people can develop ascending aortic aneurysms from having a bicuspid aortic valve as was my case.  A cardiologist I spoke with suggested to not perform the Valsalva maneuver with lifting weights where one tends to strain, and hold their breath on the last rep, but suggested stopping before you get to the point of having to strain as it could cause a future aneurysm to form in another part of the ascending aorta. 

    Thanks,
    Scott Woodward

    Sent from my iPhone


    ------------------------------
    Scott Woodward
    ------------------------------

    Original Message


  • 322.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 17:32
    Hi Goran

    Looks like I'm late to the party!
    I am 39 and had my aortic valve and ascending aorta repaired August 2019 at the Cleveland Clinic (stayed for about 2 weeks). I was and still am an avid weightlifter and fitness enthusiast.
    Your reaction to the news was definitely normal, It is a tough pill to swallow! My aneurysm was about 5.0 at the time of my surgery and I don't really know how fast it grew because it all happened sort of quickly.

    I was limited in activities for 3 months post op, then I was able to resume normal activity at whatever pace I was comfortable. I was 6 weeks post op when my daughter was born so I was able to hold her, carry the carseat, etc. I think I was limited to 10 lbs until 6 weeks then 25 lbs until 12 weeks. At 12 weeks I started working out again, playing golf, and was under no restrictions other than take it slow.
    I slowly was able to stop all of the meds they had me on and I only still take 81mg aspirin.
    I have a local cardiologist in Georgia but I still go to Cleveland for my annual follow ups. I'm actually headed there in a few weeks.
    My surgeon told me that there is a good chance that I will not have to have another surgery. From my understanding the graft will outlast me. Had i needed a valve replacement and opted for a tissue valve, I may have needed another one in 15yrs or so due to my age and activity level.

    Its great that you found this forum now! I didn't find it until after my surgery and wish I would've had all of the support beforehand. There is plenty of experience to be shared on here. A lot of us have been through what you are going through and understand how you are feeling!

    Feel free to call or email anytime as well



    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 323.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 17:56
    Hi Cole,
    Wow you are younger than me and with even a younger family. I salute you on your courage and what you went trough. As I mentioned in before during the ages of 24 to 30 in my life I lifted heavy weights to relax if you can believe that. I am still questioning my choice since I think that that might have contributed to my aneurism. 44 now and I started lifting again but than Covid stopped that and pre-Covid I did not know about my condition. Could have done more damage without knowing.

    Also it seems like that Aspirin is one of the things everyone takes, is that because of the Graft or the valve? Any other drugs or pretty much you are back to normal? The other thing that I want to find out is if the doctors mentioned what you should look out for after you recover (any pain, sensation, possible complication)? Any risks of infections since the Graft is non organic or that is pretty much a non issue once they put you back together?

    I might take you up on your offer and give you a call some time this week since I am a nervous wreck. This forum is great it is what keeps me sane and I would like to thank Victor for starting it, I think it has helped to more people than myself.

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 324.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2021 20:56
    Feel free to reach out anytime!

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 325.  RE: Aortic Aneurysm Support Group

    Posted 02-25-2021 06:21
    Hi Cole,
    Just saw my cardiologist and the biggest thing he focused on was my BP (regulated now with meds). It looks like my valve has some calcification but he mentioned that that might be due to aging (felt very old even though I am 44) and that needs to be watched. He was impressed that I lost 15 pounds :) but it is ski season so that helps. This forum and people like you that respond to my questions helped me quite a bit to cope with this condition that was not even on my map of things to consider. I hope your checkup in CC went well and all is well.

    ------------------------------
    Goran A
    ------------------------------

    Original Message


  • 326.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 15:30

    Greetings all, I am not clear on how to start a new discussion here so I responded to Vic. 

    On May 25, 2021 I was diagnosed with an ascending Thoracic Aortic Aneurysm of about 4.4cm with no aortic dissection.  It was a complete shock as I am asymptomatic.  I was training for a marathon and someone suggested a calcium scoring test to be on the safe side as I am 56.  I thought I would pass with flying colors but I did not; instead finding this condition. I have 12 and 27 year old sons.  I live in Central Connecticut.

    I am a former power lifter and it's worth noting that I am a big guy 6'4", 240lbs now looking to get to 220 (currently around 230).  I have been an avid distance runner most of my life as well.   I have completely reconfigured and adjusted my exercise routine in preparation of future surgery.  In a sense I now feel like I am training for surgery.  I have dramatically cut my weights in the gym and have slowed my running pace – although I still run almost every day and plan to keep doing so.  I am very well controlled T2 Diabetic.

    Thus far I have gotten two opinions (Yale NH and Hartford Hospital) and have a third opinion at Mass General scheduled for later in July.  The first two opinions were inconsistent in regards to timing but both suggested valve sparing aortic root replacement (VSARR) option when the time comes because my valve is normal.  My younger brother had a genetic defect (a bicuspid valve - which I do not have) and had this type of surgery about 4 years ago.  He has a mechanical valve now.   I have also proceeded with a genetic test through Yale and am waiting for results.  I am not in a situation where I need immediate intervention but it is highly likely on the near-mid horizon

    My anxiety has been through the roof at the outset and is still considerable, but improving.   Daily meditation (not easy!) has helped. I have cleaned up all my life insurance policies and very clearly informed my wife about everything financial.   If something goes wrong my family will be financially ok. I also ordered a LazyBoy chair although I was planning to get one of these anyway pre-diagnosis.

    This was the first weekend that I was not exclusively fixated on this.  I have learned a lot since my first diagnosis and opinion.  I find that there is a balance between constructive self-educating and over-educating.  That said, overall patient results and recent scholarly medical studies are very encouraging for this procedure.

    I have some experiential questions for the great community here:

    • I have read frequent post op experiences describing profound fatigue, post op depression, lack of energy, exhaustion. Why does it happen?  Do Lungs get damaged on pump?  How is this treated other than walking?  I can't quite figure out the cause and effect.
    • I am terrified of post op pain although I have read mixed experiences ranging from not too bad, to very uncomfortable. And how is post op pain managed?
    • I am also terrified of permanent surgical side effects but again I wonder if reading too much is bad. I tend to see that most people have done very well with near-normal life expectancies.      
    • I have not read many people factoring in ASI (Aortic Size index). Mine is 1.9.  I have been running and weight lifting most of my life.  Could my Aorta just be larger?  And of less risk?   

    I welcome and appreciate any feedback or thoughts or advice.

    Peter

    ------------------------------
    Peter Linn
    Watertown CT
    ------------------------------

    Original Message


  • 327.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 15:45
    Hi Peter,
    I feel everything you’re feeling and I completely understand where you are. I am 42 and found out Two years ago I have a bicuspid aortic valve and a 4.5 cm Aneurysm. I have no other medical conditions and was completely flabbergasted There are so many amazing people on here that can give you real life support based on experience. I know weightlifting and aneurysms is a big deal, so I would make sure I am seeing the best possible Surgeon and Cardiologist that is familiar with aneurysms. I went to Cleveland clinic in Ohio and saw Dr. Lars Svensson, who is the surgeon, and Dr. Desai, who is the cardiologist. They are monitoring me and I go back in November.
    I honestly think the most important thing you can do is make sure whoever you’re seeing is extremely experienced in this area and trust that they know what they’re doing.
    Hang in there and I know you will get so much feedback on here. We are all here to support you and listen.
    Wishing you the best of luck…
    Beth Moon

    Sent from my iPhone


    Original Message


  • 328.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 16:12
    Thanks Beth!  And I hear you loud and clear about going to a recognized specialist which I will be doing at Mass General later in July.  - Peter

    ------------------------------
    Peter Linn
    Watertown CT
    ------------------------------

    Original Message


  • 329.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 16:30

    Research Tarv procedures on any search engine. I hope this will be helpful 


    Sent from my T-Mobile 5G Device




    Original Message


  • 330.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 19:19
    Dear Peter
    my heart condition was different than yours; yet your concerns happen to everyone who has a opportunity to know in advance that they have a "broken heart" that will need surgical repair.  
    It sounds like you have some  family historywhich cant be altered. It sounds that overall you are in excellent health. This bodes well for an easier and smoother recovery.   
    Yes there will be pain.( as with any surgery).  You will be prescribed appropriate medications. TaKe them, if you follow instructions you should not become addicted ( which we all worry about).  Pain is a deterrent to healing.  The medicine doesn't usually make you pain free but at tolerable level. 
    Let the doctors know about any issues of anxiety and depression.  My doctors automatically prescribed sleeping ( which didn't work), anti anxiety and anti depression  medications. So I didn't suffer.  Be sure you have an "advocate ", family member or friend who can be with you ( and thinks clearly)  and "fight" for your needs. 
    You are wise to prepare paperwork, powers of attorney, wills etc.  This is actually comforting for everyone.  The days before my surgery, I had a meeting with all three sons and talked about my life opinions and gave advice  how they should live the lives. 
    Please keep us informed of your progress. 
    Encourage your caregivers to eat properly, exercise, get enough sleep etc.  
    ASK your religious congregation to pray for you. 
    Sorry I sound so bossy, all things things helped me

    ------------------------------
    Marilyn Rosenhouse
    Dallas Tx
    ------------------------------

    Original Message


  • 331.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 19:54

    Hi Marilyn:

    Bossy is just fine.  😀

    3 years ago I had a Hemorrhoidectomy operation.  It was an acute situation so there was no time for research or education.  The post op pain was brutal (that procedure is known for high pain), and they gave me opioids which I very much disliked.  I quickly moved to a cycle of Ibuprofen and Tylenol which worked pretty well.  I got through it.  If it can be tolerable that is reassuring.

    Anxiety?  Yes.  Meditation has helped a bit.  I was given Xanax but prefer to avoid.  My wife has awesome sleeping pills (temazepam) and I will take up to two per week, no more because they are habit forming and frankly I understand why.  My wife is also my advocate and will speak her mind.  I am going to ask about Dilaudid which I have been given during bouts of kidney stones (3x - I always get the fun issues…), and has worked marvelously where nothing else would touch the pain.  

    The meeting with the kids is a good tip and I will use it.  Although I am not associated with any specific religious institution, I do believe in the power of prayer and the spirit.  

    I suspect I will be here often, thanks!



    ------------------------------
    Peter Linn
    Watertown CT
    ------------------------------

    Original Message


  • 332.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 23:04
    Hey Peter,

    My name is Jonathan and I had my procedure done at Yale. If you have any questions, please feel free to message me privately. Thank you. 

    Sincerely, 

    Jonathan

    Original Message


  • 333.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 23:28
    Peter,
    There is so much information out there and it can be overwhelming. I had a deer friend of mine have the aortic repair and the valve replacement and she is doing great and feels better than she did pre-surgery! I am encouraged because she has gone through it before me….
    The stats at Cleveland Clinic for this surgery is 0.5% risk of death or stroke. The stats are better there because they do so many. I live in Oklahoma but plan for surgery (whenever that day comes) at Cleveland Clinic because I want to lowest risk possible.
    Be picky about who you see… Stay bp positive.
    That’s my 2 cents, again…. :)

    Keep your chin up and learn as much as you can..

    Your friend,
    Beth Moon

    Sent from my iPhone


    Original Message


  • 334.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 04:49
    Hi Beth, yes that statistics are very encouraging.  I am fully confident about surviving the procedure, it's more the possibility of permanent or lingering damage that concerns me greatly.  It's an emotional roller coaster; some good days and some bad.   I will stay in touch during this journey.  -  Peter

    ------------------------------
    Peter Linn
    Watertown CT
    ------------------------------

    Original Message


  • 335.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 09:26
    Hi Peter-
    I hear where you're coming from.  I also have a 4.4 AA and I went to Mass General for my 2nd opinion.  (I live in Western Mass)  I remember how completely terrified and overwhelmed I was when I first learned of my condition.  I was on the internet constantly.  While on the one hand, knowledge is power, it can also work against you if you're the type to obsess on the "what ifs".  Right now, for you... other than cutting the lifting down to very light amounts recommended by your dr,, the other thing you need to know is if your AA is growing or not.  You may find that it isn't and it actually may not and you may never need surgery.  They usually check at a 6 month interval in the beginning and if not, then annually after that.  Staying healthy and keeping your blood pressure down is key. Also - get that 2nd opinion.  Mass General has the top Aortic Aneurysm center in our area and this sort of thing is incredibly routine for them, believe it or not.  I saw Dr. Isselbacher there and the reassurance my husband and I felt could not be measured!  

    Last thought-  and probably most important...  remember when I said "knowledge is power"?  We know about our condition and for that, we are truly blessed!  Many are not so fortunate.  I know 6 other people beside myself who have/had an aortic aneurysm despite it being so rare.  2 passed with their families finding out about it post-mortem, 1 passed the day before her 2nd opinion at Mass General and I lost my best friend to it a week and a half before her scheduled surgery last year (delayed due to CoVid).  The two survivors beside myself had their surgeries locally at Baystate Hospital in Springfield and both did beautifully.  Neither had any complications or problems of any kind now, other than the "zipper". Of note is that they also had other complicating issues before surgery such as valve replacement needs, which it sounds like you don't have.  So try to stay positive and I hope that in time, you'll learn to be thankful that you know about your condition and can be proactive!  Take a few minutes each day (and throughout the day if possible) to review in your head the things your thankful for... your supportive family, skilled surgeons, top medical facilities, otherwise good health, this group for support, etc.  I think you'll find that will help too.   Best to you!  Michelle

    ------------------------------
    Michelle Pratt
    SOUTHWICK MA
    ------------------------------

    Original Message


  • 336.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 09:58
    Thanks Michelle, I am also seeing Dr Eric Isselbacher on July 23 at MGH for my third opinion.  The notion that Aortic Aneurysm treatment is "routine" for them is exactly why I am going!  Plus my sister is the CEO of the Epilepsy Foundation of New England and extremely well connected with MGH, thus able to provide additional insights and connections.

    As for the reading, yes, pro's and con's.  I suspect that by the time I need to have something done I may be able to perform the procedure myself.  Although on that note while I am becoming very educated I am strongly avoiding reading about every detail of the surgery itself.  Some things I just don't want or need to know.

    Lastly, I strongly suspect that Aortic Aneurysms are more common than the statistics show.

    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 337.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 12:25
    Yes! Does anyone else think AA’s should be routinely screened for at some point in a person’s life? Like age 40?

    Sent from my iPhone


    Original Message


  • 338.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 12:38
    Hi! I heard from a Kaiser Permanente employee that they are going to start routine screenings for AA on women over 40. I live in San Diego.
    Andrea

    Sent from my iPhone



    Original Message


  • 339.  RE: Aortic Aneurysm Support Group

    Posted 06-28-2021 19:35
    Beth,
    You are very fortunate to have a consult with Dr. Lars Svensson. As you must know, Dr. Svensson is the chair of the heart and vascular program at the Cleveland Clinic. If and when its required, repairing your bicuspid valve and aortic aneurysm will be a normal  procedure for the surgeon.
    Good luck 
    Vic Fabry 

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 340.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 08:09
    Hi Peter,

    Let me reiterate what everybody else has said. It's impossible to minimize the surgery, but several things I'll add - and I'm sure there are variables: At Cleveland, where I had my procedure, they routinely operate at 5.0. Some places do 5.5, all depending on various factors. When I first heard the word "aneurysm" associated with my valve situation I freaked out. I was a about 4.4 at the time, in 2013. My surgery was in 2019, and even then, with the aneurysm measuring around 4.9, my valve dictated the surgery. My surgeon, Dr. Lars Svensson, said he likely wouldn't have operated at that point if it hadn't been for the valve. I'm sure every doctor you talk to will suggest you quit the power lifting. That's the risk. I think we were all told to limit our lifting of things over 50 pounds or thereabouts. In my years of reading these and other forums, I've read stories from MANY lifters who resumed their lifting post surgery, after a solid recovery. On another forum I'm on, a MMA fighter I've communicated with just got through his surgery and a few weeks post has gotten on with his life. I was 67 at the time of my surgery. I'm 69 now. I was in very good shape but nowhere near in as good a shape as you. Your physical condition should be an enormous savior for your surgery. A strong core certainly doesn't hurt! I like. to tell people that if it wasn't for the scar, I would never know anything was done under the hood. No breathing, memory or any other issues. Within 8 weeks I was back to my full exercise schedule. If anything, I was stunned by the lack of pain – and I was off pain meds other than Tylenol after several days. And that's with a 9" incision. If you could get through the hemorrhoid surgery, this should be a walk in the park. I'm not minimizing it; it's a big surgery. I've had more fun in my life than I did the first few days post-surgery. I had a minor weird complication that resolved itself. 10 days after surgery I was on a plane flying back to Southern California. 11 days post-surgery I was sitting at my desk attempting to work. And I worked (writing/thinking - albeit slowly at first) every day since. I had no need for a recliner and just listened to my body and followed the protocol. It's all part of the journey of life, Peter. And as you will find at some point, and I'm sure your brother proves, the human body is amazing. You have treated yours well, and now it's payback time.

    Cheers,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 341.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 09:28
    Hi Herb (also my brothers name), I have read all of your posts and your recovery is uplifting and inspirational.  I have a very goal oriented mindset.  Give me the problem and I will work toward a solution.  I am known professionally and personally as a person who "gets it done".  I am hoping that is of benefit here.  The downside of this is that I am very impatient and I have to be pragmatic.

    Power lifting is over.  I am clear on that.  For perspective I used to bench press 405 lbs and dead lift 495.  That was 4 years ago.  Since then I had already reduced my weights but they were still likely viewed as considerable.  Now I am only using dumbbells in the gym, maximum on 50 lbs each.  I may even reduce that further. 

    Thank you for your reply and I will stay in touch.



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 342.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:02
    Peter, like you I tend to be athletic and my gym is/was my "happy place." I love working out! Now I have to rethink that a bit. I will share a story that happened this last Saturday. My GF lives out in the country about 90 minutes from my place near the Hollywood Bowl. We have 2 horses and 3 dogs and are removed from people for the most part. We took the dogs to get their nails trimmed on Saturday. All of our girls are pretty old. One of them collapsed on the sidewalk from the stress. My instinct was to go and pick her up only now I can't as she is fairly large. I had to watch the lady from the dog grooming place struggle to pick her up and put her in the car. It was mildly humiliating because I had to watch her do it and did not tell her of my condition. it was a weird feeling as I have been used to being a strong person who usually steps in to help others when heavy lifting is involved.

    ------------------------------
    Chris Kinkade
    Massage Therapist
    Burbank CA
    ------------------------------

    Original Message


  • 343.  RE: Aortic Aneurysm Support Group

    Posted 06-29-2021 13:39
    Hi Peter

    Welcome to the forum! I wish I would've found this support group before my surgery but better late than never!!

    I had OHS almost 2yrs ago at 38 to repair an aneurysm of my ascending aorta at the root as well as having my aortic valve repaired. I got a second opinion from the Cleveland clinic and they recommended a procedure that wasn't given as an option previously, so I ended up having it done in Cleveland. My aneurysm was at 5.0 when I had surgery.

    I was(and still am) an avid weightlifter, spent years doing crossfit then transitioned to olympic lifting and eventually powerlifting/strength training. When the AAA was discovered I was told not to lift anything over 25lbs or so I think, as it would increase the risk of something happening. As my condition wasn't at an emergency point, they scheduled my procedure for a few months down the road and the waiting game began. I remember trying to stay somewhat in shape but certainly wasn't going to push it. Surgery was certainly no walk in the park but it wasn't an "end of life as I knew it" either like I thought it would be. Recovery was physically and mentally a bumpy road but not insurmountable. Fatigue, shortness of breath, depression, etc all improved over time during my recovery. I was on pain meds for the 4.5 days I was in the hospital, then only advil and tylenol after that. Pain was not as bad as I thought it would be, it was more the discomfort of having a sternum on the mend. 

    After 3 months I was cleared for regular exercise and activity(completed cardiac rehab also). My doctor told me that I could do everything that I did before surgery but to take it slow and listen to my body. I literally started training again with air squats and benching 3lb dumbbells and slowly progressed from there. I am not lifting what I did pre surgery but I don't have the need to lift more and more like I used to. I am actually enjoying lifting more now because I have lost the need to always lift heavier. I see stars a little more than i used to and my lung capacity seems to be slightly less than what it used to be but nothing that has reduced my quality of life or exercise. Im not as strong as I was in terms of how much weight I can move but it doesn't matter to me anymore.

    Remember that everyone's s experience is different and you should only listen to your doctors when it comes to what you should or shouldn't do. The positive news for you is that they found it and it can be fixed. A lot of people aren't as lucky as we are when it comes to medical diagnosis.

    Feel free to reach out anytime!

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 344.  RE: Aortic Aneurysm Support Group

    Posted 07-23-2021 21:46

    Greetings all:

    Today I went to Mass General in Boston and met with Dr Eric Isselbacher, Director, Healthcare Transformation Lab and Co-Director Thoracic Center, for my third and final opinion on my Ascending Thoracic Aortic Aneurism.  My wife and I met with Dr Isselbacher for 2 hours discussing my specific situation, prognosis, and treatment options.  Currently my diameter is 4.6cm.  Under normal circumstances (i.e. no familial considerations) he would recommend surgery at 5.0-5.5cm.  In my case, given some family history, etc., my intervention target is a diameter of 4.9cm.  This is the point where he feels the risk of the condition outweighs the risk of surgery.  Since the average growth rate of this condition is 0.25cm/year, Dr I suggests we monitor approach in the short term.  Dr I said that zero growth is unrealistic but the rate of growth is uncertain.  We will be re-doing my tests in November 2021. If those tests in November show minimal or low growth rate, the next test will be in November 2022. 

    I asked all the right questions (thank you to Vic, Herb, Michelle, and Cole) and I think it's fair to say that I have a reprieve.   If surgery is indicated in the future, Valve Sparing Aortic Root Reconstruction (VSARR) will be recommended.   There are three surgeons at MGH who specialize in this procedure.  Well over 300 such procedures are done at MGH annually.   We also discussed why MGH vs other nationally recognized heart centers.  As a result I have full confidence in this heart center. 

    So, now what?  First - my family (two sons, sister) should be assessed for this condition.  Dr I even printed out some letters for them.  Second - he wants me to go on a Statin (will begin tomorrow) and possibly a beta blocker depending on my at home BP readings over the next 3-4 weeks.  Third - no weight lifting beyond any intensity I can "talk through", and no Marathons.  5K's and 10K's are ok to run. 

    And fourth – live!  May 2021 has brought me face to face with my own mortality. I have always been pessimistic about my life expectancy and health overall but this heart/aorta condition has taken my pessimism to a new level.  I was very frightened.  My perception of just about everything has been altered.  As I read or interact with people here, and other places, I see things in a very different light.  I am more in the present than I have been since a young child.  The drive to "do, accomplish, achieve" has gone to almost nil.  Instead the drive to be present with people and appreciate experiences has become the priority.  I want to experience as much as I can, now.  I am spending lot more time with family, friends, and acquaintances from all walks of life.  I am doing this proactively and with full intention.   I have decided to treat with MGH on an on-going basis.  That means regular visits.  Regular visits represent a reminder of the risk I face.  I see that as a very good thing.

    I am not leaving this site.  Today was not a cure or full resolution.  It was a reprieve from short term anxiety and a message of perspective.  I recognize and appreciate it for what it is. 

    - Peter



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 345.  RE: Aortic Aneurysm Support Group

    Posted 07-24-2021 07:21
    Peter,
    Thank you for your update and a promising future outcome. Mass general is has an excellent reputation and your surgeon has the right credentials.  The information about the planned VS procedure is excellent since my surgical valve needs a TAVR procedure very soon.  My experience confirms the estimate of a .25 cm/ year aneurysm growth rate. Stains are important for your heart condition as well as rhythm management drugs. Your exercise routine after surgery will change. My routine now consists of 22 miles of walking/running per week and 16-18 laps a day in an outdoor pool during the summer.
    Thank you for the report and you have everyone's support in the future.
    Regards,
    Vic


    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 346.  RE: Aortic Aneurysm Support Group

    Posted 07-25-2021 11:02
    Peter, your homework and thoughtful planning matched by your decision to live life today are strategies many of embrace. Yes, priorities change. Me too

    Stay in touch and Godspeed 
    Doris Edwards 



    Original Message


  • 347.  RE: Aortic Aneurysm Support Group

    Posted 07-25-2021 11:11
    Peter Linn,

    You have made the correct decision and well educated one I might add. Please be advised that you will never regret it. 

    Please keep us all informed.

    Regards,

    Michael Hinderlie
    941-421-0482

    ------------------------------
    Michael Hinderlie
    Port Charlotte FL
    (941) 421-0482
    ------------------------------

    Original Message


  • 348.  RE: Aortic Aneurysm Support Group

    Posted 08-04-2021 11:36

    A pharmaceutical update.  Since visiting MGH in late July I have been on Crestor (5mg) with zero side effects.  I am now (today) also going on a beta blocker, Atenolol (25mg).  They tell me that this is the preferred BP lowering med for people with TAAs.  Anyone have any experiences with this?  I also have my next scan scheduled for mid December 2021.  



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 349.  RE: Aortic Aneurysm Support Group

    Posted 08-07-2021 09:40

    *I'll apologize now if this doesn't appear as a general discussion in this thread vs. a reply to the last thread. Attempting to do this on an iPhone. 


    Hello all, I'm a 34yr old male living in northern Virginia. I was diagnosed with a 4.4cm aortic root aneurysm in late July found while investigation some heart palpitations.  I guess because of the aneurysm it's pulling the valve apart a bit causing moderate regurgitation. Cannot get into see a cardiac specialist until 8/13 and a first surgeon's opinion until 8/19. 

    I appreciate the large amount of content here! It has definitely helped to take the edge off of this (evolving) experience. 

    The waiting to get real answers is eating me alive.

    Until this diagnosis last month I was living life in the fast lane working as a full time career firefighter. On my days off shift I regularly mountain bike, paddle whitewater, rock climb and ski. 

    Obviously now I cannot lift more than 40# and am no longer riding calls, but instead on desk duty. I'm also not paddling or climbing. 


    What I wanted to know from the group is what stipulations post surgery were you given for the future moving forward? For lack of a better term, exactly how rowdy can one be post surgery?

    I realize this diagnosis, while saving my life, will likely cost me my career. Also, mountain biking has traditionally been my stress reliever…will this still potentially be possible? I'd hate to have to worry my way through every ride that the vibration of the rocks/roots/variations in the trail is slowly destroying the valve (if needed) and/or replacement section. Same with rolling a kayak or paddling aggressively in strong currents, etc.

    Just trying to figure out what the future may look like.

    Thanks!



    ------------------------------
    Steve Cover
    BRISTOW VA
    ------------------------------

    Original Message


  • 350.  RE: Aortic Aneurysm Support Group

    Posted 08-07-2021 10:02
    I've been on atenolol for 25 years to control PVCs (irregular heartbeat). It does and controls my B/P. It also helps with anxiety....a good effect. I tolerate it well

    Good luck
    Doris


    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------

    Original Message


  • 351.  RE: Aortic Aneurysm Support Group

    Posted 08-07-2021 10:04
    Hi Steve,
    Congrats on finding the problem before it found you! I think you will find most people here went on with their lives after the repair. This includes weight lifters, mountain bikers, MMA fighters, etc. A 4.4cm is not large (surgery is often 5.0-5.5) and it could take years before it gets surgical, unless your valve gives out first. You're doing the right thing by starting research.

    My advice: Get several opinions! Don't be afraid to ask questions. If the doctor intimidates you, get another. In the end, the surgeon will be the deciding factor on when it's time.

    You will find similar sentiment here as well as other valve forums. I'm sure plenty of others will weigh in.  Sounds like you are in top physical shape. That will serve you well when/if the time for surgery comes. You have a very long, active life ahead of you. Just keep on top of it (in other words, don't set it and forget it) and you will be fine. 
    Cheers,
    Herb


    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 352.  RE: Aortic Aneurysm Support Group

    Posted 08-07-2021 11:13
    Morning Steve Cover

    Every persons surgery and recovery is different.
    Real quick, with mine at age 65 the surgeon did not
    really know what he was going to find until he had
    me on the table and opened up.  I was actually in 
    ICU when stitches let go and the whole surgery had
    to be redone with no advance planning.

    This is the time you need to just let the healing process
    happen.  Without our health there is no successful job 
    or career.  Without our health, family members also
    suffer.

    I am sure your surgeon will work closely with you as you
    recover from your surgery.

    Good luck and Best Wishes to you

    Mary H





    Original Message


  • 353.  RE: Aortic Aneurysm Support Group

    Posted 08-07-2021 11:17
    Steve - I live in Bethesda Maryland. Happy to chat sometime tomorrow - are you available?

    ------------------------------
    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------

    Original Message


  • 354.  RE: Aortic Aneurysm Support Group

    Posted 08-08-2021 10:15

    Thanks to everyone for the responses! Seeing a cardio specialist this coming week and first opinion from a surgeon in the area later next week. Will be courting several more surgeons and then coming up with a long term game plan. 


    Karin - Thanks for reaching out. This weekend is really full but I will very likely contact you by way of email later this week when things level out a bit. 

    Everyone enjoy your Sunday! 



    ------------------------------
    Steve Cover
    BRISTOW VA
    ------------------------------

    Original Message


  • 355.  RE: Aortic Aneurysm Support Group

    Posted 10-05-2021 10:07
    Greetings from across the pond!

    This is my first post, I do hope it is in the right section.

    Reading experiences of others in this post is very reassuring because I don't know anyone else local to me who is going through this at the moment.
    My ascending aorta dilation was found in February, when a CT scan was performed to check my lungs, I was told it measured 46mm I am 52 years old.
    Since then I have had an echo, four more CT scans -scanning from the top of head to knees, and blood taken for genetic testing.
    My father's brother died of Aortic Dissection aged 73 years- the cardiologist is expecting to find a genetic link?

    I have a further appointment booked with the cardiologist later this month to receive the results of the tests, I am both looking forward to the results and dreading what could be revealed at the same time?

    Best Regards to Everyone

    Darren Tebbit
    Cambridge England.


    ------------------------------
    Darren Tebbit
    ------------------------------

    Original Message


  • 356.  RE: Aortic Aneurysm Support Group

    Posted 12-14-2021 19:53

    Quick Update.  Today I went to Mass General and got another contrast dye CT scan on my Aorta.  I am delighted to report that nothing has changed from May, and I am stable at 4.6cm.  I had a few anxious days in advance of this. 

    My next appointment is in one year.  If that one also shows no change we may go to a 1.5 or 2 year scan cycle.  BP is under control and was 115/70 during the visit, which is about normal for me these days. 

    I hope everyone is doing well.



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 357.  RE: Aortic Aneurysm Support Group

    Posted 12-15-2021 05:54
    Peter,
    Congratulations!  Maintain your positive attitude, continue stress reduction and a moderate exercise program. I wish you a Merry Christmas and a Healthy New Year.
    Vic Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 358.  RE: Aortic Aneurysm Support Group

    Posted 12-16-2021 09:43
    Peter, congrats! Just stay on it and monitor… as we all know you will do.

    Herb


    Original Message


  • 359.  RE: Aortic Aneurysm Support Group

    Posted 12-14-2021 14:42
    A hello to the entire group.  Indiana here.  my very first echo (yesterday) showed 3.9cm ascending aortic dilation.  To say the least, this 55 year old very active male person is rather freaked out.. to top it off, though I received results yesterday from the radiologist, i have yet to hear from my PCP.  is 3.9 drastic?  I just got back from 2 wks of playing very competitive beach volleyball.  In the summers I'm an avid cyclist.. I also scuba dive.  does 3.9cm put me at risk which would prevent me from any of the above?  I know this is really early since i have yet to hear from PCP but i'm even afraid to go to the gym now to do step class, etc.   can someone shed light on the 3.9?  my googling shows that 50% over the norm (2.0) is considered not great.   i'm almost 100% over.  is any of the danger of size related to the physical size of the whole body?  I'm 6'3" 220 lbs.  would my "norm" be above a 2.0cm?  OR does the 2.0cm apply to all adult males regardless of body size?    I would appreciate any info regarding how bad the 3.9 size is as well as any info on surgeries to fix etc, etc. 
    p.s. my root is also dilated but not by much at all. 
    p.p.s.  apologies if composed thoughts above are not very concise.. I'm still trying to take all this in, in the last 24 hrs, and am completely wigged out.

    ------------------------------
    Scotty Yelroscam
    IN
    ------------------------------

    Original Message


  • 360.  RE: Aortic Aneurysm Support Group

    Posted 12-14-2021 17:46
    Scotty,
    You don't mention your cardiologist in your posting. Your PCP should have recommended you to a cardiologist for a consult. They are heart specialists who can answer all your questions and put your mind at ease. 
    Good luck,
    Vic Fabry

    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 361.  RE: Aortic Aneurysm Support Group

    Posted 12-15-2021 14:11
    Scotty,

    Welcome to club Aorta!

    Firstly, like Victor says you need to see a cardiologist, they will be able to advise you best about your condition.
    From my own experience (52 year old male 6'1" 150 lbs 4.5cm dilation) I would say the measurement taken by an echo can be quite inaccurate.
    You need a CT or MRI with contrast for an accurate measurement. I have had a number of scans now and the echo readings have been some way off the others.
    Until you get an accurate measurement, and are advised by a cardio you need to be careful what you do.
    Gentle exercise only, don't stress your body with competitive training.
    Relax and enjoy life at a slower pace, and remember you are one of the lucky ones because you now know about the dilation, and can alter your life to prevent yourself being one of the unfortunate victims of this silent condition.

    ------------------------------
    Darren Tebbitt
    ------------------------------

    Original Message


  • 362.  RE: Aortic Aneurysm Support Group

    Posted 12-16-2021 09:19

    Club Aorta indeed.  I agree that Echo is not usually accurate, can be misleading to the positive or negative.  In my case Echo is not used due to dense chest musculature which prevents accurate imaging.  CT contrast or MRI is better but you have to balance the radiation dose.

    All Doc's stressed to me the importance of no longer lifting heavy weights in the gym and keeping BP lowered with meds or otherwise.  Running was indicated to be ok within reason.  No more marathons for me but 10K's are fine.  What is heavy weight in gym?  I was told that if I have to strain to move the weight (grunt) it's too heavy.  So "too heavy" can vary from person to person.

    3.9cm is not alarmingly big based on what I have read and researched.  The number is in and of itself not the only factor.  Your anatomy and ratios also matter.  Check out: When are thoracic aortic aneurysm (TAA) at increased risk for rupture? Also check out videos at the Cleveland Clinic which are highly informative.

    Bear in mind that the growth of these aneurysms is usually very slow.  The idea is to slow growth even further through med and lifestyle changes – if at all possible.  This board is a wealth of knowledge on this subject but there are plenty of articles.  



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 363.  RE: Aortic Aneurysm Support Group

    Posted 12-16-2021 12:38
    so strange cause I saw in email you replied, but i dont see it here on main page (but I did read it).
    my doc has not suggested a cardiologist :-(     and I cant figure out how to post on the site (I'm on the full site on my computer).
    incidentally my calculated rate (of all the diff types of skin area, i chose the one which would  make my score the highest) is only 1.7256.
    scores are:
    <2.75 low risk
    2.75-4.25 moderate risk
    >4.25 high risk

    of course ECHOs arrent super accurate, but I cant imagine it being off too much one way or other and would still be in the less than low risk category

    ------------------------------
    Scotty Yelroscam
    IN
    ------------------------------

    Original Message


  • 364.  RE: Aortic Aneurysm Support Group

    Posted 12-16-2021 14:58

    Scotty,
    Tell your PCP you want a consult with a heart specialist and he should  comply with your request. Establishing that relationship now is smart, and the cardiologist can answer all your questions about heredity, family history, exercise. diet and heart risks.
    Vic



    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------

    Original Message


  • 365.  RE: Aortic Aneurysm Support Group

    Posted 01-14-2022 15:55
    An Update.

    I went to Hospital this week for an appointment, consultant believes my dilation could be caused by Anderson-Fabry disease?

    https://pubmed.ncbi.nlm.nih.gov/19850557/

    This link explains that in a study of 106 patients with Fabry disease, Aortic Dilation was found in 32.7% of males and 5.6% of females.

    Has anyone received this diagnosis?

    Tests are now being carried out to see if I am suffering from this?

    Darren




    ------------------------------
    Darren Tebbitt
    ------------------------------

    Original Message


  • 366.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2022 08:27
    I am so glad to have found this group and see that others have went through or are going through the same thing as me.  46, 190 lb., 6'1 male.  I have been routinely tested annually for an aortic root aneurysm that was initial spotted on a CT scan in 2019.  The size was 4.6 cm.  The last two years it was 4.8 cm.  Last weeks annual scans showed the size to have grown to 5.1 cm.  The heart surgeon called me and recommends surgery.  He said he would normally wait to 5.5 cm, but he had a patient my same age and same aortic root measurement rupture over the weekend and they will likely not make it (way to scare the daylights out of me).  I have been well aware of the seriousness of this aneurysm so there is no need to convince me of surgery - I know it is needed.  I've been told my heart surgeon is very capable and good, so I guess I will pray his skills are better than his dry personality.  The more I think about it, the more anxiety I have. I would like to get this done sooner rather than later so I can get on with my life without the constant worry of a possible rupture.  Given my age and health, I know that I have very good odds of everything going well during surgery, but I still worry.  Now the heart surgeon wants me to see a cardiologist to get another CT scan before surgery (not clear why this is needed when I have already had a ton of tests) but I can't get in for another 2 weeks - so more waiting and worrying.  Any tips on how you mentally prepared yourself for surgery?  I can only imagine that I will be a basket case on the morning of surgery.  

    Thanks for listening,
    Jeff

    ------------------------------
    Jeff Kroesch
    Bensenville IL
    ------------------------------

    Original Message


  • 367.  RE: Aortic Aneurysm Support Group

    Posted 01-18-2022 23:53
    Hi Jeff,

    I would get a second opinion fairly quickly. Northwestern has a very good and well-regarded program.

    Several things to keep in mind:

    • While 5.5 is the guideline for aorta repair, 5.0 is considered surgical at Centers of Excellence (high volume heart hospitals). This is a very good explanation of when surgery is suggested after guidelines changed in 2020 by the head of Cleveland Clinic's heart program (he was my surgeon.) This is even better by another Cleveland surgeon - his whole page has a lot of aorta dissection videos. He explains why 5.0 is when they do surgery.
    • CT is generally preferred by surgeons before surgery. It gives them additional data, and helps plan. Also realize that surgeons often measure aortas differently than radiologists or cardiologists. 
    • You want a surgeon who does A LOT of these procedures... not someone whose bread and butter is bypasses. That's my opinion. 
    • If you are in good shape you should do fine. I had my aortic valve, root and aorta replaced/repaired a few years ago when I was 67. Today if there wasn't a scar I wouldn't know anything had been done. Attitude is HUGE here.

    Again... unless your doctors are saying this is an emergency and it's about to dissect, I would talk my way into a second opinion somewhere really good, if you can.

    Don't hesitate asking more questions.

    Cheers,
    Herb

    PS, don't freak out when they also give you an angiogram pre-surgery to check for clogged arteries. It's standard procedure for all open heart surgery. After all, they're already in there, they might as well fix anything else that's broken. I had a single bypass to correct a blocked artery I didn't know I had!

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------

    Original Message


  • 368.  RE: Aortic Aneurysm Support Group

    Posted 01-24-2022 11:29
    Thanks Herb - and to all the rest of you.  Your replies and well wishes make me feel a lot better!

    Herb, you were right.  Cardiologist ordered and angiogram - which is tomorrow AM.  Thanks for the heads up otherwise I would not have expected that.  He also put me on beta blockers.

    This was the first time I met this cardiologist.  I was very impressed with him and he made me feel more comfortable with the surgery.  He also made me feel more comfortable about the surgeon.  He said he is very competent and he has about 5-6 of his patients who have had this same procedure performed and they are doing excellent.  He even told me he had a patient who had a rupture in his office and my surgeon saved his life - without even giving him blood (the patient is a Jehovah Witness).  He said if the surgeon and the team were not confident performing this surgery, they would have sent me to Loyola in nearby Chicago.

    Trying to stay upbeat and looking on the bright side.  I actually cannot wait to be done with this and on my way to recovery!

    ------------------------------
    Jeff Kroesch
    Bensenville IL
    ------------------------------

    Original Message


  • 369.  RE: Aortic Aneurysm Support Group

    Posted 01-25-2022 11:56
    Dear Jeff:
    it sounds like you are on the correct path. This is a very stressful time for you. Thanks for reaching out to us for support .
    One day at a time. I encourage you to bring someone ( spouse, friend, close relative) with you. Another set of ears is good, they can record what the doctor says . Also, Be honest with your symptoms when you talk with medical personnel.

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655


    Original Message


  • 370.  RE: Aortic Aneurysm Support Group

    Posted 01-26-2022 06:26
    Marilyn's advice is spot on.  My wife has been with me for all my appointments and has picked up comments and information that I entirely missed, especially early on when I was in shock mode.  This is extremely stressful, especially at first and having this support group has been incredibly beneficial.

    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 371.  RE: Aortic Aneurysm Support Group

    Posted 01-26-2022 14:05
    Something that came to me via email today that I wanted to pass on to everyone:

    https://www.heart-valve-surgery.com/Advances-In-Aortic-Valve-And-Aneurysm-Surgery.pdf

    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 372.  RE: Aortic Aneurysm Support Group

    Posted 01-09-2023 17:37

    Update:

    Today I went to MGH for my annual heart scan and I am happy to report a stable result.  In the past 13 months there has been no growth.  Doc feels that it is partly due to my controlling my lifting (specifically intense exertion) and more importantly my blood pressure med regimen which includes on a daily basis:  Hydrochlorothiazide (25 mg), Crestor (5mg), Valsartan (80mg), Atenolol (25mg).  My next scan is in 18 months.

    I will admit that as the scan date got closer my anxiety went up considerably, especially in the past few days.  I suspect that one day I am going to go for a scan and there will be a different message.  However, for now I have 18 months when I can put this far into the background.

    I hope everyone is doing well.



    ------------------------------
    Peter Linn
    Connecticut
    peter.linn@att.net
    ------------------------------

    Original Message


  • 373.  RE: Aortic Aneurysm Support Group

    Posted 01-09-2023 19:26
    Peter,
    Congratulations on the excellent results!  Your new exercise program is no doubt a major  contributor to the stability of the aneurysm.
    I had my second OHS for aortic arch aneurysm, soon after pushing my car off a highway, when it ran out of gas. I did not understand the risk of such an action.
    I now go daily to a health club for 60 minutes on a treadmill and 20 minutes on life-fitness machines. 
    Best of health, Vic
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 374.  RE: Aortic Aneurysm Support Group

    Posted 01-27-2022 14:43
    Yes continue your good Work. 





    Sent from my T-Mobile 4G LTE Device




    Original Message


  • 375.  RE: Aortic Aneurysm Support Group

    Posted 01-28-2022 08:17
    In my experience, a successful consult with a cardiologist, heart surgeon or social worker requires a the team approach. Any consult relating to a heart condition is naturally stressful and anxiety inducing.  As you ask questions, your spouse, daughter, son or other family member can listen to both the content and nuance of the response. Often, if I've missed or misheard the answer, my teammate will ask for a clarification. A teammate can ask the questions you didn't think to ask or forgot to ask.

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 376.  RE: Aortic Aneurysm Support Group

    Posted 01-19-2022 00:26

    Agree with Herb. Go to the most experienced surgeon to get the best results. Cleveland clinic is the best in the country for this kind of surgeries. Call them and one of the nurses will tell you how to submit CT scans and test results for the doctor's review. I was very impressed how efficient they are. If your insurance would not cover the surgery at Cleveland Clinic, do research and find the best doc near you who does a lot of surgeries like this. Not just one or two per year. When you find him /her and learn about  outcomes, you will feel much better.




    Original Message


  • 377.  RE: Aortic Aneurysm Support Group

    Posted 01-26-2022 14:33
    You're in the right place Jeff!

    I didn't find this forum until a few months after my surgery. I had my valve and an ascending aortic aneurysm repaired in august of 2019 and know what you're going through. I was 38 when it was done and same build 6' 190lbs. Mine was 5.0cm when surgery was recommended by the team at Cleveland Clinic. They use some kind of calculation with height, weight, and size of aneurysm to determine what the threshold is for each individual person.

    I went through the same worries that you are before surgery. The mental part was the toughest for me before and after the procedure. The good news is that today I live a completely normal life with no limitations at all. I take aspirin daily and antibiotics before dental cleanings and that's it. Its not an easy thing to go through but we get through it!

    You sound like you are in a good place with it and you will definitely find lots of support from people who have walked in the shoes you're in right now!
    Keep us posted and feel free to reach out if you need to talk about it.

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------

    Original Message


  • 378.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2022 08:12
    Hello Everyone!  I am new to this forum and site.  I am scheduled to have my aortic aneurysm repaired on 2-7-22.  I am BAV and had a homograft put in 21 years ago.  The valve is still kicking but my aneurysm hit 5.2 cm in November so here we go.  I was originally scheduled for 1-17-22 but my wife got Covid and surgery was postponed.  My first surgery went great but very nervous once again.  It is quite helpful to connect with others who got past this.

    ------------------------------
    Daniel O'Brien
    Geneva IL
    ------------------------------

    Original Message


  • 379.  RE: Aortic Aneurysm Support Group

    Posted 02-01-2022 09:21
    Daniel 
    You were very fortunate to have gotten 21 years from a biological aortic valve. The aortic aneurysm repair surgery will probably include a new aortic valve.  Based on my own experience with an aortic aneurysm surgery 15 years ago, here are questions to ask your surgeon before surgery:
    a. Ask which valve they plan to use?
    b. How long the surgery will last? 
    c. How long you'll be in hospital?
    d. Post surgery recovery period?
    e. Post recovery weight restrictions? 
    f.  Exercise recommendations?
    e. Special covid protocols?
    g. Family visting restrictions?

    Since you've undergone OHS before, that  knowledge should help you understand the process of recovery. You may email me with questions.
    Best of luck,
    Victor Fabry
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 380.  RE: Aortic Aneurysm Support Group

    Posted 02-02-2022 20:37
    Vic,
    Thank you for your reply.  The anxiety can't be avoided to some degree, but I will be ready to go.  Ready to put it behind me.  It is great to read other experiences to be prepared.
    Dan

    ------------------------------
    Dan O'Brien
    Geneva, IL
    ------------------------------

    Original Message


  • 381.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2022 20:10
    Update! Surgery took place last Wednesday and I was home by Saturday afternoon. My surgeon and the whole staff were awesome, and my heart valve was also able to be saved! Now on the road to recovery - not as bad as I expected. More back and shoulder pain than anything else. Finding a comfortable sleeping position is tricky at times.

    So glad to have found this group. You gave me the courage to get through this and know better days lie ahead!

    Sent from my iPad


    Original Message


  • 382.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2022 20:16
    Congratulations on a successful surgery! Your story gives me hope and encouragement. :)
    Take it easy and I am happy you found a place to share your story.
    Congratulations again!!
    Beth Moon :)

    Sent from my iPhone


    Original Message


  • 383.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2022 20:18
    Congrats, Jeff. It only gets better from here. A few bumps, maybe, but enjoy the journey. Just follow the CC protocol and you will be amazed at your progress.

    Cheers,
    Herb


    Original Message


  • 384.  RE: Aortic Aneurysm Support Group

    Posted 02-15-2022 20:34
    Jeff 
    Congratulations your a very lucky patient!
    Team Sugical team saved your valve ��
    You were discharged in thee days ��

    Sleeping is best if you lie in your right side.
    Prop a pillow behind your back for comfort.
    Walk for outside for exercise if weather permits or inside at an indoor mall, if it's too cold. Increase the time/distance as your endurance improves.
    Best of luck,
    Vic Fabry
     

    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 385.  RE: Aortic Aneurysm Support Group

    Posted 08-10-2022 17:09
    Today is exactly my 13 month in recovery from ruptured triple a emergency surgery. In my case I was hospitalized from 7/10-8/23/2022. As background I never really gave much help to my body and always let stuff go. On this day 13 months ago I found the excuse to take care of two long festering problem, a chronic severe leg ulcer and a large hernia causing me some duress this day. After an uneventful ambulance ride to South Shore Hospital, my real next memory is being delivered to an OR!

    A cat scan had indicated an on going rupture to the aorta. After that I don't have much a recollection of what was happening around me. On ventilator and drugged up to cause what I could remember, terrible nightmares. After removal of ventilator I was unable to talk at all, never been so thirsty in all my life. Next up on the remember part is family and drs. coming in my intense room to inform me of trach, pic for feed tube and colostomy( deep anal wound had developed)? While that is going on, they add plaque in my lower left leg is adding amputation to the mix??

    Long story short only an ostomy was done, but the whole surgery recover and nightmares started all over again. That surgery was done exactly a yr ago today. At that point I had not been out of bed. My first attempt at walking would come a week later. Five days after my first steps in 5 plus weeks of to rehab.  If you are reading this we all know the routine so we fast forward to today.

    Right now I am going to have 2nd 3rd toes trimmed to first joint as  the plaque did it's job destroying the circulation. Have a meet with surgeon on remaining aneurysms, then make decision on the ostomy. I am 73 yrs old and a side effect from this is my arthritis and loss of circulation in legs has left me walker bound, better than the  other possibility but I'm not much fun on a dance floor.

    Been an experience I would not wish on anyone, I'll say a lifetime of excess has a lot to do where I am. No real regrets just a big thanks to those that gave me an extra 13 and counting

    Doug MacIVER
    Hanover Ma

    ------------------------------
    Douglas D MacIVER
    HANOVER MA
    ------------------------------

    Original Message


  • 386.  RE: Aortic Aneurysm Support Group

    Posted 08-10-2022 18:35
    Douglas,
    You provided an amazing story of quick diagnosis and responsive hospital care.  I am familiar with the south shore and since an aortic aneurysm surgery is often complex, what is the size of your local hospital?
    a. Which medical center are you planning to have aortic aneurysm surgery? 
    b. What experience does the surgeon have with aortic aneurysm procedures?  
    c. How much post-surgery care from family and friends can you rely on ?
    d. How close is the hospital to your home?

    I've survived two aortic aneurysm surgeries in (2007) and (2017) and would be glad to answer any questions.
    Regards,
    Vic Fabry



    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 387.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 08:11
    Hello Vic & Hello fellow members of this support group, I am happy to have found you! In late December 2017 it was discovered that I have a thoracic ascending aortic aneurysm after a knee surgery turned disastrous and I developed a DVT. Pulmonary embolisms were an inch from my heart by the time I made it to the ER and the subsequent cat scan also revealed an AAA at 4.1 cm. (worst Christmas ever...) Annual Cat Scans revealed no growth until last year when it came in at 4.4cm and then this year at 4.8. I was advised to seek a surgeon and was fortunate to be able to secure the services of Dr. Richard Shemin who is the Head of Cardiac Surgery at UCLA. At present my surgery is scheduled for September 16 unless an earlier date opens up. I have been a therapeutic massage therapist in private practice in Hollywood for 33 years. I also play the celtic harp. I have a pretty easy stress free life (except for the pesky knee surgery 5 years ago.) I am seeking advice on what I can expect post surgery in terms of waht tio expect and how I will be able to navigate my life and getting back to being able to do what I love to do which is my work as a massage therapist. I am 6 ft 1, weigh about 224 and have always been strong, athletic and able bodied. I would appreciate any suggestions, words of wisdom or encouragement as I head into this latest "adventure" in my life. At present my spirits are good, my attitude positive and my hopes are high. Thank you for considering sharing anything a newbie like me should know!

    ------------------------------
    Chris Kinkade
    Massage Therapist
    Burbank CA
    ------------------------------

    Original Message


  • 388.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 09:02
    Chris,
    Thank you for the request for information about my experiences with two open heart procedures to repair an ascending aortic aneurysm.
    You are fortunate to have the services of Dr. Shemin, Head of Cardiac Surgery at UCLA As the head of Cardiac surgery at UCLA, he is
    the most experienced surgeons at one of the best heart hospitals in the country,  Based on my experiences, here are some suggestions:
    a. Write all your questions down for your pre-procedure consultation
    b. Have your wife or family member with you for that consultation 
    c. Discuss a "valve saving" procedure with the repair of your aorta
    d. Ask about the number of days post-surgery in the hospital
    e. Discuss the cardiac rehab program provided by the hospital
    f.  Ask about restrictions when you return to your profession
    g. Discuss exercise recommendations for the first 6 months 

    Your questions indicate that you should be well prepared for an excellent outcome.
    Regards,
    Vic Fabry
    CEO, Greylock Advisors, LLC 





    Original Message


  • 389.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 09:36
    "Have your wife or family member with you for that consultation"  

    This is a very important point.  My wife came with me during my consultations and heard different messages than I did. 

    Peter Linn
    Mobile:  7816215263



    Original Message


  • 390.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:03
    Hi Peter, it is sound advise. I wish my GF could have been there because she is much smarter than myself but alas I had to go solo.

    ------------------------------
    Chris Kinkade
    Massage Therapist
    Burbank CA
    ------------------------------

    Original Message


  • 391.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 15:43
    Thank you so much Vic. I met with Dr. Shemin last Monday and a lot of this was covered. He exuded compassion, intelligence and knowledge. I knew I was lucky to have him at the helm of this "adventure." In fact his whole team was impressive. I did have a list of questions which he very patiently answered. I did not have my GF with me because she lives out in the country and is a school teacher and it was the very first week of school so I went to the appointment solo. He told me to prepare for 2 to 3 months of not working as a best case scenario. most of my clients come to me but I still do some outcall massage so obviously my concern is my ability to carry my massage table and stuff to the locations. Being self employed is great until you suddenly have a situation like this where there is zero income coming in. Fortunately I am in good shape financially to be able to take the time off. Like a friend of mine said to me "Your health come first, figure out the rest later." Still, having a career I have done for 33 years come to a grinding halt again (2007 stock market collapse, 2017 knew surgery disaster, Covid shut down and now this) is a challenge for someone that makes my living by "showing up" to work. All part of life's rich pageant I guess. On my website for my work on the very first page is a quote I love by Heraphilles: "When health is absent...wisdom cannot reveal itself, art cannot manifest, strength cannot be exerted, wealth is useless and reason is powerless."

    "When health is absent....wisdom cannot reveal itself, art cannot manifest, strength cannot be exerted, wealth is useless and reason is powerless"- Heraphilies



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    Chris Kinkade
    Massage Therapist
    Burbank CA
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    Original Message


  • 392.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 17:36
    Chris,
    It appears that you have completed all the preparations for your surgery next month. I have some suggestions for you when you are discharged and back home.  Send me (us) an update and I will share some tips on your first two weeks in recovery.
    Best,
    Vic Fabry 
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC



    Original Message


  • 393.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 17:53
    Oh thank you Vic! Yes, any suggestions will be greatly appreciated! I just got off the phone with UCLA and they have scheduled me for a cardio-angiogram a week before the surgery on September 9th (My surgery date is September 16th.)  Dr. Shemin wanted to make sure if there is anything else to fix while he is "under the hood" he can be prepared. I figure that's a reasonable and sound approach!

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    Chris Kinkade
    Massage Therapist
    Burbank CA
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    Original Message


  • 394.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 09:53
    Chris, everything Vic and Peter said, plus this word of encouragement - you have a great mental attitude and you're in really good physical shape. Those two things alone will go a long way to serving you well. Plus you have a fantastic surgeon at a very good institution. We've all been there/done that and we're here to tell you that after this "repair," and the brief interruption it will cause, life goes on, and the pesky knee will return to being your biggest issue.

    Herb

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    Herb Greenberg
    San Diego CA
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    Original Message


  • 395.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 10:12

    Chris,

     

    I just had my ascending aorta and aortic valve replaced 6 months ago, and I currently feel great.  I am 58 and in ok shape, so the recovery was not too bad.  The initial couple of weeks after the surgery is already a blur.  Cardiac rehab helped me and keeping up the exercises recommended went a long way to having a good recovery.  My surgeon was calmly confident about the procedure and that put my mind at ease, although it is hard to look forward to it.  Best wishes on a speedy recovery and let us know how you are doing.

     

    Dan

     

     




    Original Message


  • 396.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:08
    Hi Dan, thank you so much. I am comforted by what you shared and hope you are experiencing excellent health and your recovery towards that is ongoing and without and further issues.

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    Chris Kinkade
    Massage Therapist
    Burbank CA
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    Original Message


  • 397.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:31
    Hi Daniel,

    Was your recent surgery done open heart?

    I’m going to need my bovine aortic valve replaced soon.
    ( initial open surgery 5/2011) I’m also being monitored for a 4.1 cm TAAA.
    I’m hesitant to have the valve replaced via trans catheter because of how friable the aorta & aortic aneurysm is. Open surgery is the gold standard, but the surgeon is wanting to do trans catheter. ( and continue to monitor the aneurysm) I’m 66, fairly healthy, slim/petite, active. I don’t want to risk stroke or a tear via trans catheter. Seems like open would be better in case the aneurysm is larger than thought from scans, and requires emergent repair.

    Debi Ries


    Original Message


  • 398.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:59

    Debi,

     

    My surgery was done open heart.  I now have a dacron tube in place of my ascending aorta and a new Inspiris Resilia bovine aortic valve.  My aneurysm was 5.2 cm in leading to the surgery and the surgeon said that this tissue was pretty thin as he did the procedure.  I would not have needed the aortic valve to be replaced but for the aneurysm and to avoid, hopefully, a second OHS in the near future.  I was watched for 3.5 years while the aneurysm stayed at 4.9 cm until late last year.  With your concerns, have you sought a second opinion?  That is likely what I would do if I was in your shoes, for peace of mind.  I wish you all best.  Please let me know if you have any more questions.

     

    Dan

     




    Original Message


  • 399.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 22:50

    Thank you, Dan 
    I'm looking further into getting a second opinion. My medical group only has a couple experienced cardiothoracic surgeons. ( I was told mine is the best ) When I asked for a second opinion, I found out the second opinion doc is a partner of my original surgeon, and they work very closely together. 
    If I was a wealthy person, I would choose a different place for surgery... but alas I'm told he is the best in our group! ( San Diego , CA) 
    When I meet with the surgeon again, I'll bring up my concerns and ask if I can make the informed choice for myself! 

    Blessings on you and take good care !

    Debi Ries
    c: (916) 548-3638 





    Original Message


  • 400.  RE: Aortic Aneurysm Support Group

    Posted 08-15-2022 16:06
    Thank you so much Herb! I have been reading your posts on here and they have given me a lot of hope regarding what's ahead for me. I so appreciate you reaching out.

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    Chris Kinkade
    Massage Therapist
    Burbank CA
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    Original Message


  • 401.  RE: Aortic Aneurysm Support Group

    Posted 04-08-2023 14:11

    Hello All,
    You have been a BIG support for me on this journey. I am 44 with BAV (moderately severe AI) and Ascending Thoracic Aortic Aneurysm (4.5cm).
    I have a doc in Oklahoma and a Cleveland Clinic doc. I was going to Cleveland Clinic, yearly, we found out about all this almost 4 years ago, and we are watching and waiting. The surgeon here says closer to 4.7 4.8 is operating time and Cleveland is about the same. I am now following up here early in Oklahoma while also corresponding with Cleveland with each visit.

    My surgeon here sent me to a congenital heart group that is actually doing valve repair and I'm sending a YouTube clip of what it is. I guess I'm just asking for opinions. The congenital surgeon group in OK, who are a great set of surgeons, is ready to do surgery in the summer if I'm good to go.

    I think it's relatively new and I did send a message to my doc at Cleveland because I am also waiting for him to look at my newest scans and get back with me about what they are saying.
    It's called HAART 200 for valve repair.
    The drawback I'm understanding is they don't know how long the repair would potentially last. 

    https://www.youtube.com/watch?v=F3U7MMQr1J0

    Has anybody heard of this and what are your thoughts?

    My youngest kiddo is still in 10th grade. I think the next right thing would be just to wait and hear what with Cleveland Clinic says.
    Thanks for listening!
    Beth Moon :)





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    Beth Moon
    OK
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  • 402.  RE: Aortic Aneurysm Support Group

    Posted 04-08-2023 14:21
    Hi Beth!

    Glad you're doing so well! I would definitely wait to hear back from Cleveland. And don't be afraid to be a squeaky wheel!.

    Herb

    Sent from my iPhone



    Original Message


  • 403.  RE: Aortic Aneurysm Support Group

    Posted 04-08-2023 17:13

    Beth,
    As Herb Greenberg mentioned, continue your close contact with the team at Cleveland Clinic. The clinic is the best heart center in the country and you can have confidence in their diagnosis and recommendations.
    Vic Fabry



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    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
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    Original Message