168 posts tagged with Tetralogy of Fallot.

Medical Trauma: Guilt vs. Thankfulness

by Jennifer Rogers on Thursday, Sep 19, 2019

If you’ve had open heart surgery, you’ve been through medical trauma. I was born with the congenital heart defect tetralogy of Fallot; I had my first surgery at 8 days old, and then my first open heart surgery when I was 8 months old. I was too young to remember, but it was the first time I experienced medical trauma.

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A Heart Month Message from the ACHA Board

by Barry Meil on Wednesday, Feb 13, 2019

Hello ACHA members, and Happy Heart Month!

I am the Immediate Past Chair of the ACHA Board of Directors, and I am also the parent of a 38-year-old son with tetralogy of Fallot. I found ACHA and got involved when, 20+ years after being told that my son was “cured,” he began to have rhythm problems and went to an adult cardiologist for advice.

As is so often the case, it did not go well.

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Walk for 1 in 100 Spotlight: Villains With Heart

by Renee Riege on Tuesday, Feb 12, 2019

The Bearded Villains are a worldwide brotherhood of elite bearded men from all over the world who are dedicated to the beard, charity, family, respect, and loyalty. The Tennessee Chapter of the Bearded Villains, known as the Three Star Villains, was established in March 2015. With a brotherhood that spans around the United States and the world, the Three Star Villains learned of Villains in other parts of the country whose family and lives had been affected by congenital heart defects.

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The Importance of Research to the ACHD Patient, Continued

by Melissa Hartman on Friday, Jan 11, 2019

To quickly recap from my last post on this topic: I addressed how questions about treating people who have congenital heart defects are answered—how do practitioners know what to do and that it will work?

Maybe you have heard of evidence-based practice. Healthcare providers rely on evidence-based research to guide their practice. In my last post, I addressed how that evidence is formulated and used.

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My Mixed Emotions

by Robert Grabel on Friday, Jan 04, 2019

Hey, I just became I bionic. Move over, Six Million Dollar Man…

The above is me being funny. I was told humor is one of the best ways to deal with the mixed emotions that can hit you when you’re fitted for an ICD. Sometimes it works. Sometimes not so much. Mainly, the humor is for me. It’s a good distraction from thinking that I now have an incredible piece of technology near my heart that’s helping me live. Speaking of mixed emotions, that’s a big part of the recovery process. I’m beyond grateful to be here (yes—here and alive!).

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Miss West Virginia: The Paradox of My CHD

by Madeline Collins on Tuesday, Aug 28, 2018

For as long as I can remember, I have felt that my heart condition was a paradox in my life, an inconvenient reality that did not match my body or spirit. A dancer since the age of two, I have spent most of my life on a stage asking for attention, yet wanting the scars of my surgeries never to be noticed. I wanted to stand out during every performance while always hoping that no one noticed when I fatigued quicker than my fellow dancers, or that my coloring was fading to pale by the end of a piece.

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Our Stories, Our Futures: Advocacy as a Lifelong Journey

by Ken Woodhouse on Tuesday, Mar 06, 2018

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

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My Story of an Unintentional Mistake

by Becca Atherton on Wednesday, Jan 17, 2018

About three months ago I messed up big time when it came to my health and medication. While it was all an accident, I didn't want to update and tell everyone what had happened because it was all my fault and I really didn't want to feel like I had to defend myself or reassure people that I didn't do it on purpose.

I forgot to take two weeks’ worth of one of my pulmonary hypertension medications.

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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.