171 posts tagged with Tetralogy of Fallot.

COVID-19 and the Impact on ACHD Patients

by Christy Sillman on Tuesday, Mar 24, 2020

I can’t be the only person who wakes up every morning and thinks to myself, “Maybe it was just a bad dream? This can’t be real life!”

The SARS-CoV-2/novel coronavirus/COVID-19 crisis has completely upended our way of life. It’s all anyone is talking about. Where I live, in California, our entire state of 39.56 million people are now on a “stay at home” directive in an attempt to decrease the sharp upward curve of severe cases that could overwhelm our healthcare systems. Schools are closed, all businesses besides essential services are closed, and our legendarily clogged freeways are now actually functional.

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The Ones Who Care For Us Part 2

by Robert Grabel on Thursday, Mar 05, 2020

Back in March 2016, after my valve replacement surgery, I wrote a post for ACHA called The Ones Who Care For Us. I discussed the importance of being grateful for our loved ones who support us as individuals with congenital heart disease. A recent experience served as a powerful reminder of how important it is to appreciate the people that mean the most to us…

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What Heart Month Means to Me

by Jennifer Rogers on Wednesday, Feb 05, 2020

It’s finally February, which means Heart Month is here! I don’t know about you, but this has to be one of my favorite months. It’s an exciting time of year, known for eating as much chocolate as possible and feeling mushy-gushy about our significant other. But, more importantly, it’s also a huge window of opportunity to educate ourselves and others how to keep our hearts healthy.

Let me ask you something: What does Heart Month mean to you? Really, please stop and think about it.

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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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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

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.