Mended Hearts Open Forum

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Adult congenital heart patients

  • 1.  Adult congenital heart patients

    Posted 04-06-2017 13:34
    Hi everyone, I was just wondering if there are any others who are adult congenital heart patients.  I don't know any and would love to hear others stories. 


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    Katie Hawes
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  • 2.  RE: Adult congenital heart patients

    Posted 04-07-2017 02:04
    I had a congenital heart defect. It was a bicuspid aortic valve. I knew about it since I was 10 years old. My mother had surgery at 47 and 50. I required open heart surgery at 53 years old when I also had an aortic aneurysm that was identified by way of a echo cardiogram. I'm 64 now.  My grandfather had a abdominal aortic aneurysm that required surgery in his mid-70s. Yes this is hereditary. 

    What kind of information are you interested in? I'm open to share. I am actively involved with the San Diego Chapter of Mended Hearts.  

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    Karen Christian
    San Marcos CA
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  • 3.  RE: Adult congenital heart patients

    Posted 04-07-2017 20:18
    I was born with a bi-cuspid aortic valve.  It was repaired when I was 8 years old.  At age 58, I had a second surgery to replace my aortic valve with a mechanical valve. So, I am an adult congenital heart patient.

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    Bill
    Garland TX
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  • 4.  RE: Adult congenital heart patients

    Posted 04-07-2017 20:32
    Hi Katie!

    We have a lot of adult CHD patients in our membership. I'm a mom of a Son with a CHD (he's only 8) but I've met a bunch. Even the President of MH, Donnette Smith was born with a CHD.
    Glad to have you here. Hopefully some others will chime in and share their story.

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    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
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  • 5.  RE: Adult congenital heart patients

    Posted 07-18-2018 21:46
    Hi Katie!
    My daughter is an adult CHD patient - she's almost 22. She was born with:
    pulmonary stenosis
    transposition of the great arteries
    double-outlet right ventricle
    complete atrial-ventricular septal wall defect
    over-riding aorta
    single valve with regurgitation
    interrupted inferior vena cava
    secondary superior vena cava
    right aortic arch
    and some other minor ones. She just came home (about 2 weeks ago) from surgery at Boston Children's hospital in preparation for a future bi-ventricular repair. Right now, she has a fenestrated Fontan (surgery at 8years old) and is doing pretty well (although she is dealing with some complications that were hopefully resolved in Boston). The internet wasn't quite so big (FB groups and all!) when she was growing up, so she never had the opportunity to connect with other CHD kids, so she's a pretty private person. I'm always encouraging her to reach out. As much as I try - I simply can't relate or understand as another CHD kiddo could. Please feel free to reach out or respond if you have any questions or want to connect :)

    ~velia

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    Velia
    CHD mama
    Arlington TX
    (682) 558-9080
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  • 6.  RE: Adult congenital heart patients

    Posted 07-19-2018 09:45
    Hi,

    I'm always excited to hear from other congenital heart people .I have pulmonary stenosis, transposition of the great vessels and a single ventricle . I had a Fontan when I was almost 4. This lead to a pacemaker.  I'm coming up on my 33 birthday soon. If your daughter would like to talk about anything even not heart related, let me know. I can give you all my email address if she wants so it can be more private. Let me know!


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    Katie
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  • 7.  RE: Adult congenital heart patients

    Posted 07-19-2018 14:52
    ​Hi Katie and Velia,

    I'm a CABGx5 patient but I just read a book yesterday by Thomas Manella called "The Zipper Club: A Memoir."  He's a congenital heart patient, around 36 years old and lives in or around Naples, NY.  He also has his own web site.  The book is about growing up with a heart condition that they discovered when he was 5 years old and his trials and tribulations growing up with the condition and trying to fit in as a normal kid  It was amazing and really hit home for me even though I am not a congenital heart patient.  I read it in one day and highly recommend it.  You also may be able to reach out to him personally.

    Best of luck,

    Ira

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    Ira Reid
    Hoboken NJ
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  • 8.  RE: Adult congenital heart patients

    Posted 07-20-2018 09:22
    Hi I'm a CHD dad. Our daughter was born with Pulmonary Atresia and had a Blaloc Shunt at 6 weeks at Riley Hospital, then repair at Mayo Clinic. At 7 she had patch expanded and at 21 she had valve put in both at Riley. No valve before because it wouldn't grow as she did. She now goes to a Cardiologist that specializes in adults who were born with congenial heart defects. We now have a Mended Little Hearts chapter in our area lead by an adult CHD person. They have a lot of info for adults since. They are really good for CHD people throughout life. So much better than Facebook. Being quiet doesn't mean your alone. Please stay connected because as a parent we are still involved.  
     Jerry Tenbarge


    Sent via the Samsung Galaxy S®6 active, an AT&T 4G LTE smartphone





  • 9.  RE: Adult congenital heart patients

    Posted 07-26-2018 20:21
    ​Hi Katie, and others,
    I wanted to let you all know about the Adult Congenital Heart Association at Adult Congenital Heart Association - Home


    I have been a part of the ACHA for 5 years as a CHD provider.  The great thing about the organization is that providers AND patients work together to improve care for people with CHD. I encourage you all to take a look. They have the most complete information on defects and resources you can find and have an "ambassador" program that can link people with the same defects to get questions answered. I know a lot of people reach out on social media to get help but the ACHA, as with Mended Hearts are trusted resources that I recommend! I have been a member and speaker for my local Mended Heart chapter and think the combination of resources is awesome.  I'm happy to see so many people reaching out for more CHD information! 

    ACHA remove preview
    Adult Congenital Heart Association - Home
    Treating congenital heart defects in adults is to understand the continuum of the disease from its infancy. The Adult Congenital Heart Association brings together valuable research, training opportunities and standards of care to help you help your patients and further define this specialization of cardiovascular disease.
    View this on ACHA >
    .

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    Camille Richards
    601-984-4567
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  • 10.  RE: Adult congenital heart patients

    Posted 08-10-2018 02:56
    Hi Katie,

    I was born with ASD and mitral valve regurgitation. They didn't find it until I was 4 and I was repaired at age 12. I currently live a pretty normal life..I exercise regularly, have 2 children and have been fortunate enough not to need more work on my valve just yet ( I'm a few weeks shy of turning 33). My daughter also has CHD, she had unbalanced AV CANAL with a single AV valve. She was repaired 10 weeks ago at age 5 weeks, so this family knows all about the struggle! I would love to chat about what your going through if it would help, it always helps me :)

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    Megan H.
    C.T.
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