shashakitty7
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shashakitty7, February 1,  2021  3:23pm EST

My life learning about my new medical conditions.

Hello I am new to this and my name is Shannon, I found out about 3 years ago on accident that I was born with a Bicuspid Aortic Valve and I have a ascending Aortic Aneurysm. Which I was told will need Open Heart Surgery. I was very scared when I heard this I now monitor my heart once a year. I learned my heart condition comes from a genetic condition I was born with. Becuase of a clotting disorder I found out I have after having a DVT and bilateral pulmonary embolisms and cerebular strokes is what led me to hostpital which is how I found out about my heart condition I never knew I have. I feel a bit alone with these condtions and would love to meet others and talk to others who understand. Thank you

4 Replies
  • AHAModerator
    AHAModerator, February 2,  2021  8:51am EST

    Hi Shannon,

    Thank you so much for sharing your story. I'm sorry that you're going through this but I'm glad that you've joined the support network. As you hear from others on the forum, I can also share some stories from AHA's Heart Valve Ambassadors to help you learn more. Please keep us updated on how you're doing.

    Best,

    The AHA Team

  • AmbassadorDN
    AmbassadorDN, February 2,  2021  1:33pm EST

    Welcome, Shannon!

    You have certainly come to the right place. Some people do not find out that they were born with a congenital heart defect, or CHD, until adulthood. Singer Amy Grant is one such person who learned about her CHD as an adult and in fact just had surgery to address her defect last year.

    We have a wonderful community of members and Heart Valve Ambassadors here who can offer you insight and share their experiences with heart valve disease. Feel free to ask away! Although my CHD is related to my mitral valve and supporting structure, I felt alone for many years until I found a support system of fellow valve patients.

    Take care and feel free, again, to ask any questions you may have.

    To Heart and Soul Health,

    Ambassador DN

  • AmbassadorMR
    AmbassadorMR, February 2,  2021  2:14pm EST

    Hi Shasha,

    As my fellow Ambassador Deb has posted, we are a community of heart patient survivors and would like to support you in your journey in any way that we can. Often that is emotional support as you come to grips with your condition and any treatments that are required to address the physical issues. We as Ambassadors have been through it ourselves, so we speak from first hand experience. My own heart surgery back in 2012 was the result of also being born with a bicuspid aortic valve. I'm 8 years out now and doing amazingly well so just keep as informed and aware of your conditions as possible and lean on us at any time if you need encouragement. My very best to you as deal with all health related issues and life in general.

    WIth Heart,

    Ambassador MR

  • Lizz1323
    Lizz1323, February 10,  2021  10:03pm EST

    Hello Shannon, 

    I'm liz, I'm 20 years old and I just found out today that I have bicuspid aortic disease too. It's really scary first finding out, especially out of the blue. I wish I could give more information but I dont know much. But I can give some conversation if that helps.

     

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