Mended Little Hearts Open Forum

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  • 1.  Hi! I'm new to this forum and wanted to introduce myself.

    Posted 11-12-2021 12:12
    My name is Daneen and have lived with a congenital heart defect for the past 50 years.  I was born with a BAV (bicuspid aortic valve). I have had mild stenosis with it progressing to moderate in my late 30's.  

    About 10 years ago I was diagnosed with an aortic coarctation when I started presenting with high blood pressure.  Doctors say I was most likely born with it as well.  

    In October, after my most recent echocardiogram with a new cardiologist,   after moving back home to AZ, I was given some news that things have progressed.  

    I was told that my BAV stenosis is severe with an AVA of .55.  Also, I was informed that I have developed an aortic dilation as a result of my other conditions.  

    To make a long story short, I'm probably headed toward getting a valve replacement, and most likely an aortic graft to replace the dilation and coarctation.  My dilation is at a 4.3 from what the echo showed.  I know they do both replacements if the dilation is 4.5 or higher. I'm thinking since it is close and they have talked to me about the graft procedure, that they will be replacing it too.  

    I will know more after getting the results back from my CT scan, TEE, and catheterization, which will be the end of November.  

    Any advice or similar experience would be helpful.  Also, I have lived with my mother who has had so many heart issues and surgeries, that I would love to be of support to you as well. 

    Thank you,

    Daneen Douglas
    Mesa Public Schools

  • 2.  RE: Hi! I'm new to this forum and wanted to introduce myself.

    Posted 11-14-2021 16:02
    Hi Daneen
    The coarctation may not require surgery. Depending on the nature/ extent could be possibly managed in the cath lab with catheter based interventions. With re to aortic valve and the root, you have many options including the Ross procedure which could serve you well for the rest of your life, but you would need to go to a surgeon who is trained in doing that operation. The results for any of the various surgical options s regardless are quite excellent now a days.
    Hope this gives you some reassurance.
    Be safe

    pirooz eghtesady