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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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  • 11.  RE: Adult congenital heart patients

    Posted 08-26-2019 17:31
    I was born with a Congenital Heart defect (ASD primum) and I HAD NO IDEA until this year (2019).  After an adventurous life of traveling the world, marrying someone from another country, a semi-stressful job as a licensed architect, having two beautiful children, living in South America for two years, relocating back to the glorious USofA, I had a mild heart attack in January at the age of 48... After three days of tests, a VERY LARGE HOLE was discovered in my heart.  I had it repaired just three weeks later through open heart surgery on February 8th and I'm now 6 months post surgery and feeling good.  I will "graduate" from Cardiac Rehab this week! I'm doing exercise that I never thought possible.  In my late 20's, I was MIS-diagnosed with "Exercise Induced Asthma".  I never believed I had asthma because that inhaler thing NEVER helped me do exercise.  I was simply always out of breath... which apparently is the only real symptom for undiagnosed ASD.  Apparently, my hole was so large that it could not be heard with a stethoscope! The other symptom that my cardiologist (my hero) said would go away is migraine headaches, which I had since I was nine.  And guess what??? NO MIGRAINES anymore!  Having this discovered was the BEST thing that has happened to me.  Can ANYONE relate to my story?  Are there other adults out there who didn't know they had a CHD until later in life??? I would LOVE to hear your story.... BLESSINGS, LIGHT & LOVE to all of YOU !!!

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    Jill Farfan
    architect
    Lexington KY
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  • 12.  RE: Adult congenital heart patients

    Posted 08-27-2019 23:11
    Hi Jill and Everyone!

    Jill, welcome to the group!  I was born with Tetralogy of Fallot, which involves four defects, one being VSD (Ventricular Septal Defect).  I needed my first surgery at about 14 months, a shunt to hold me over, and my second surgery, total repair, was done when I was 6 years old.  After that, I led a pretty typical, active childhood and gave birth to two babies naturally.  I continued to go to Children's Hospital (Pittsburgh) for check ups and now I attend their Adult Congential Heart Clinic.  I agree with others recommedations to go onliine to ACHA and to stick with an ACHC doctor who understands us!  I'm 52 now and began having heart arrhythmias about 5 years ago, so I'm being watched for them and for a leaky pulmonary valve.  It's so amazing that you lived until 48 without discovering your heart defect!  I'm sorry you were misdiagnosed and didn't get the proper care sooner, but so thankful you are doing well now.  I will pray for your continued recovery and wonderful, migraine free days and no shortness of breath!  ENJOY!  Each day is a gift! :)

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    Tina Marshall
    Cranberry Twp PA
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  • 13.  RE: Adult congenital heart patients

    Posted 08-28-2019 06:22
    Wow I can relate to each of these stories.

    I too was told I have "exercise induced asthma" been on inhalers for almost ten years.

    I ended up with a triple by pass March 26, 2019.

    I had no pain with any of this issue.

    Recently started again with the shortness of breath, did another nuclear stress test and an echo, both I failed.

    Had another heart cath.  Found out that the vein used from my left arm is narrow restricting blood flow.

    Medications changed and different medications ordered.

    Shortness of breath is not as severe with the new medication.  Started back at the gym to increase my abilities with cardiac rehab on the gym floor.

    Yes everyday is a miracle and a gift.  I too have had the cardiac blues.  Went back to work at ten weeks.

    Still working on healing.  From my cardiologist and the surgeon it can and sometimes take a year.  This was a trauma to your body, mind and soul.

    Without this group, I have no idea where my head would have been.  You have been an amazing part of my recovery and I am totally thankful to each and everyone of you.

    We are all here for a purpose, lets make use of the gift we have been given and live life to the fullest.

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    LINDA GRAMZ
    MELBOURNE FL
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  • 14.  RE: Adult congenital heart patients

    Posted 08-29-2019 13:28
    Linda,

    I enjoyed your response.  I support 'living life to the fullest' after Open Heart Surgery.  When I thought I was having complications after surgery (which I wasn't - just fear induced from acclimating to my newly patched heart), my cardiologist said to me, "just live your life."  BEST ADVICE.
    I agree that this is a great forum to help 'elevate' our spirits... which need mending as well.  We all have 'dips' and need to get re-aligned with our 'selves'.  Please reach out fellow recoveries... I enjoy the discourse. :) :)

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    Jill Farfan
    architect
    Lexington KY
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