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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

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



  • 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

     






  • 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





  • 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
    ------------------------------



  • 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
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  • 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
    ------------------------------



  • 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.




  • 10.  RE: Aortic Aneurysm Support Group

    Posted 2 days ago
    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
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  • 11.  RE: Aortic Aneurysm Support Group

    Posted 2 days ago
    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 






  • 12.  RE: Aortic Aneurysm Support Group

    Posted 12 hours ago
    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
    ------------------------------



  • 13.  RE: Aortic Aneurysm Support Group

    Posted 12 hours ago
    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
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  • 14.  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
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  • 15.  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
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  • 16.  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  





  • 17.  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.

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    annette smith
    saxonburg PA
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  • 18.  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





  • 19.  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
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  • 20.  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!