KT1999
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KT1999, April 25,  2021  11:26pm EST

14-Year-Old Heart Transplant - Scared

My 14-year-old son was born with Critical Aortic Stenosis. He had his first open heart surgery as at two-months old. Then another one two weeks later. Another at one-year old and again at eight-years.  Forgive me for not remembering all of the details, because he has had so many surgeries, buthe has one valve that is now a mechanical one, and either a pig valve or bovine, in what think was his pulmonary valve. 

He's supposed to take three different medications twice a day.

He had a procedure last month to increase the size of the valve and we thought all was well.

But now the doctors at his local children's hopsital are discussing a heart transplant. So, of course, I'm terrified hearing that.

Looking at him, you wouldn't know he was any different than kids his age. But it's looking like a transplant is going to happen. 

If there is anyone out there that has a similiar experience with young people and heart transplants, I'd appreciate hearing about it.

His mom and I are used to his surgery and basically "band-aiding" his heart, but the thought of a transplant terrfies us. That being said, we will not go against the doctors' recommenadations.

4 Replies
  • AHAModerator
    AHAModerator, April 26,  2021  9:00am EST

    Good morning,

    Thank you for sharing your experience and your son's story with the support network. I completely understand the feelings of fear you are experiencing around hearing that a heart transplant may be in his future. As you continue to interact with others on the support network and hear their stories, I hope you will learn that you are not alone in this. In the meantime, I can share a few resources with you, like this one on Heart Transplants or this one on Preparing Children for Heart Surgery.

    Please keep us updated on how you and your son are doing!

    Best wishes,

    AHA Moderator

  • JamesPL
    JamesPL, April 29,  2021  7:48pm EST

    I am so sorry for what you have had to go through all these years. I can understand how stressful that would be. I think it is a wise decision to go with your doctor's recomendations especially if you are comfortable with your healthcare professional. I have not had this type of experience but I have great confidence in the care and technology afforded us today after having had my own heart scare years ago. Since your son has had a number of surgeries already, I'm sure you have a similar opinion. As frightening as a heart transplant sounds, it could be that the result will be a more stable stronger heart for him. Perhaps this is your doctor's thinking as well. 

    Probably the two best pieces of advice I can offer is to ask a lot of questions and make time for yourself. The more educated you are about the procedure, the less anxiety you may have. Taking time could also help manage whatever stress you're having.

    Wishing you and your family all the best!

    Jim

  • jerzeycate
    jerzeycate, April 30,  2021  9:16pm EST
    baby-feet-1527456_1280.jpg.
    Here is a link to the Facebook page of a family with a Transplant Child. I have followed Owen and his Mom since his birth with severe heart problems. You can follow their journey as Owen fights for life, stabilizes and lives a pretty normal life.  https://www.facebook.com/search/top?q=Owen%27s%20Superhero%20Heart.
    Through this page you can connect to his Mom's Blog where you can connect with other familes of youg Transplant Patients.
    I wish the best for all of you.

    It's A Great Day To Be Alive

  • jerzeycate
    jerzeycate, May 5,  2021  8:47am EST
    154754831_1897544200384791_6360135194423451037_n.jpg.

    I wanted to share with you a link to a Facebook Page I think may bring you some comfort and some contacts

    Owen's Superhero Heart  The page and Blog https://simmonsfamilyupdate.blogspot.com/?m=1 are written by a Mom, who like you, has a child with severe cardiac issues. Owen's whose journey I have followed since soon after his birth in 2013 with Hypoplastic Left Heart.  It is an amazing story as Mom chronicles Owen's fight to live. 

    As you will see he has come so very far and is plaaning for a long life ahead.

    I came across Owen's Story not long after my own diagnosis with a Critical Cardiac Disorder, brought on by a viral infection back in 2013 when doctors told me thatt, without a transplant I had 3 months to live. Owen's journey gave me so much strength. If this little guy could fight then so could I. That was 8 years ago and we are both, still going strong--defying the odds all the way.

    I wish you well. Please take care of yourself. The toll these journeys take on our families is immeasurable. It can be easy to overlook your needs when his are so pressing.

    It's A Great Day To Be Alive...

    Cathy

     

     

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