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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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    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.

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    Brenda Williams
    Cabot AR
    (501) 843-4727
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    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.

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    Laura Calamuci
    Teacher
    retired
    Staten Island NY
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    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.

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    Jeffrey Dawson
    retired
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    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 



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

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    cindy wilday
    SHREWSBURY
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    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 5 days ago
    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

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    prince carpenter
    marketing
    NJ
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    Original Message


  • 13.  RE: Aortic Aneurysm Support Group

    Posted 5 days ago