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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



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  • 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 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.

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    Tom Hilgers
    Salem OR
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    Original Message


  • 8.  RE: Aortic Aneurysm Support Group

    Posted 4 days ago
    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

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    Michelle Pratt
    SOUTHWICK MA
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    Original Message


  • 9.  RE: Aortic Aneurysm Support Group

    Posted 3 days ago
    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

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