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jlhyde85, March 11,  2019  10:43pm EST

saying hello (tetralogy of fallot mom)

Hi Everyone,

I wanted to take a minute to introduce myself on this particular channel on the support network. My name is Jen, and I have tetralogy of fallot. I'm 33 and I had an open heart surgery at 2 to help my pulmonary stenosis. Then I had a full pulmonary valve repair in 2010. I received a bioprosthetic heart valve at the time, and it has truly enriched my life so much.

In 2010 I was mostly asymptomatic and just went in for an annual(ish) echocardiogram after having fallen out of care for a few years. It surprised me to learn that I had pulmonary hypertension and that I appeared to be about 6 months shy of heart failure. My surgeon explained all of my valve options and recommended the bioprosthetic valve to me based on my lifestyle and symptoms and I'm sure all of the tests he ran. The surgery not only saved my life but it really put my cardiac health where it should have been all along: at the center of my attention. And since, I've learned that so many of us ACHD folks fall out of care as I did. I recently became a mom (my son is almost 11 months old) so this is at the forefront of my mind.

I almost wasn't the same person I am today. I almost wasn't able to have a baby. And I didn't even know I wanted a baby 10 years ago. My pregnancy was closely monitored by a team of doctors familiar with ToF women, and I'm actually going for my 1-year postpartum cardiac check up next week!

I've learned so much about the heart in the 10 years since my valve replacement surgery, and am so grateful for this support network. Still, I would love to meet other ToF moms, or ACHD women as well. And, I would love to know who else is here in this forum. ACHD is still such a new field that it's always nice to meet anther person who shares my experiences.

Would you introduce yourself? I'd love to know your story and about the things that are important to you :) 

3 Replies
  • AHAASAKatie
    AHAASAKatie, March 12,  2019  9:35am EST

    thank you for this great prompt! Best Katie 

  • Kimberly25
    Kimberly25, April 1,  2019  6:09pm EST

    Hi, I also have a Tetralogy of Fallot but I'm single person female I've been a diagnosis in this disease since birth I can't able to do the daily activities that wanted too it's hard to me to act like a normal person which were not. now I already got my first surgery but still waiting on my second I hope we can be friends

  • Blaire86
    Blaire86, April 4,  2019  2:44am EST

    Your story is truly beautiful. I am a tetralogy of fallot baby, I had 3 open heart surgery's to correct it. The last surgery being a fontan. I'm looking for people to talk to who have similar CHD. Unfortunately I was unable to have children but I always dreamed of it. You are so blessed! I really enjoyed reading your story if you would ever like to talk I sure would. Thanks for sharing 😇

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