fionaysobel
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fionaysobel, August 24,  2019  3:22pm EST

Aortic Valve Replacement - Recommended Hospitals?

Hi Everyone, 

This is my first post. I was diagnosed with Bicuspid Aortic Valve and an "enlarged" aorta 4 days ago. I had an echocardiogram that diagnosed it and a CT scan yesterday for which I am waiting for the results The way I understand it, if my aorta is at or greater than 5cm, I will need to have surgery to repair it and possibly repair / replace my aortic valve. That being said, I am researching the best places to get this surgery done. I understand that Cleveland Clinic, Stanford Medicine, Cedars-Sinai are on that list, and I think somewhere in Houston (not sure which medical group), and potentially others? Please let me know if you have researched this and can inform me. 

I am hoping my results will allow me to delay any surgery or at least have time to plan my surgery, so send thoughts and prayers for good CT scan results!

Thanks in advance,

Fiona 

3 Replies
  • ricbruce
    ricbruce, August 28,  2019  2:40pm EST

    Hi Fiona,

    This is just my experience.  On July 10, 2018 I was diagnosed with severe Aortic Valve stenosis.  Apparently I was born with a bicuspid valve and never knew it and it was only causing me trouble with age.  My condition too was discovered by an echocardigram.  Later a cat scan and a heart catheterization showed that all of my other arteries were pristine.  I met with a heart surgeon at Mount Sinai St. Lukes in NYC on July 13 and my open heart sugery was scheduled for August 1, 2018.  My surgeon was Dr. Gabrield DiLouzzo who Iis head of the department there, I believe.  I had complete confidence in him and felt that I was in great hands.  My surgery and recovery were a breeze.  Wishing you the best of luck!

    Richard

  • fionaysobel
    fionaysobel, September 7,  2019  8:39pm EST

    Hi Richard, 

    Thanks for your response! It turns out that my aorta is at 5cm, so I have to have surgery fairly quickly. The local heart institute seems to be good from what I understand (Sanger Heart & Vascular in Charlotte, NC), so I will likely be having open heart surgery there. I meet with the surgeon on September 12th and am busy compiling my long list of questions. I have to admit, I am terrified! I have been an athlete my whole life (competitive swimmer primarily, but I do lots of other things as well), so this is a complete shock to me. The idea alone of OPEN HEART SURGERY is crazy! I think my big decision will be what type of valve to go with, I don't think being on blood thinner is something that I want to do, but I need to talk with my surgeon obviously. I have a lot to learn. Anything you can share helps! How were the surgery and recovery a breeze? I have heard it is a long, hard recovery!! But I have only known about this for two weeks, so again, I have a lot to learn. I am 46 years old and otherwise very healthy. 

    Thanks for sharing!
    Fiona

     

  • ricbruce
    ricbruce, September 10,  2019  12:49pm EST

    Hi Fiona,

    I have always been athletic and worked out.  My heart surgeon said that it was to my benefit that I was in such good shape going into this. I was frightend going into this. Although unpleasant my recovery was fairly easy and I can happily say that one year out I am back wehere I was with my workout routine, etc. and feeling great.  I did get myself an incline pillow and I have a sleep number bed so it was eaasy to raise and lowwer myself. I suffered a little bit of depression after the surgery but even that subsided.

    I lived in Charlotte for 9 years before moving to NY and my sister still lives there. Great city.  It sounds like you are in good hands and good health.  I think you will be fine.   Just do what the doctors tell you.  When will you have your surgery?  Will be sending you positive energy.

    Best,

    Richard

     

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