Our ACHA bloggers cover many topics relevant to the CHD community. 

How Anxiety Helped Me with CHD

by Jennifer Casson Tripucka on Monday, Jul 22, 2019

When I was in graduate school, I literally thought I was dying—having severe palpitations and waking up sweating and unable to feel my limbs. A few cardiology tests later, it turned out it was anxiety: body-paralyzing, completely overwhelming panic attacks and night terrors. Chalk it up to not sleeping, too much caffeine, demanding work and school schedules, family things—it was undeniable.

Being a naturally anxious, type-A person (please find me someone with a heart condition who isn't, I would love to talk shop!), having CHD can be quite a rough diagnosis. But sometimes, there’s a silver lining in it. Here’s how anxiety really helped me personally get in tune with my body.

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Measuring the Immeasurable

by Robert Grabel on Tuesday, May 28, 2019

It's been six months since I got my surprise gift, a brand new combination pacemaker and defibrillator. I learned several valuable lessons following the operation. The biggest was the importance of gratitude for the simple things in life. Being alive. Experiencing and sharing with others. And on it goes… The list of things we can be grateful for would take the remainder of the words these posts are limited to!

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The Very First Walk for 1 in 100

by Kelly DiMaggio on Monday, Apr 29, 2019

The inaugural Walk for 1 in 100 series kicked off this past Saturday at Wheaton Park in Maryland, and was nothing short of a rousing success! As I sit down to write this, I'm still struggling with exactly what I want to say. There are no adequate words to describe not only the walk itself, but everything leading up to it—there was so much pure emotion associated with it all. However, if I had to pick three words to sum it all up, it would be love, support and passion. An abundance of love, support and passion! 

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From Camper to Counselor

by Cassandra Reinbold on Thursday, Apr 18, 2019

Two weeks after I was born, the doctor came rushing in with more doctors behind him during my check-up to discover I had a special heart. Appointment after appointments, they discovered I was born with an unrepairable ventricular septal defect. My first surgery was when I was five months old and my second surgery was when I was a year and five months old.

When I was an adult, my sinus node began to fail, so I had my third open heart surgery when I was 25 to get my pacemaker to keep the beat of my heart regular. The surgeries have given me so much potential to do things in life; if I didn’t have such a great team of doctors and support from family and friends, I wouldn’t have been able to get as far as I have in life.

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Why Show Up?

by Darcie Farella on Thursday, Mar 21, 2019

This year marked my third consecutive year going to Washington D.C. for the Congenital Heart Legislative Conference. To be honest, I almost didn't attend. The Congenital Heart Futures Reauthorization Act was just signed into law a few months earlier and I was debating if I really should go advocate.

I recently moved, still had stuff in boxes, and had more than enough going on at work. Frankly, I just wanted to use the couple of days I had scheduled out of the office to sleep in, hangout with my cat and unpack some of my belongings. The one thing that kept me from cancelling was that I had a newly elected Representative for my district and I knew it was important to start early with making a connection, so I showed up!

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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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Improvise, Adapt, and Overcome

by Paul Borgman on Thursday, Jan 31, 2019

The infamous unofficial slogan of many U.S Marine units has helped some of America’s bravest and fiercest men and women through the physical and mental hardships of war; however, putting these three words into practice is not limited to just America’s heroic warfighters.

Through my own experience with truncus arteriosus, I have had to essentially live by these words. During my third open heart surgery about five years ago, weeks before I began my junior year of high school, I suffered a stroke. This combination of events threatened to crush my dreams of making varsity on the school swim team, and possibly even attending college.

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Disclaimer

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.