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

Pedaling the Pounds Off: Where My Story Begins

by Jared Gould on Wednesday, Nov 06, 2019

Hello, world! My name is Jared Gould. I was born with hypoplastic left heart syndrome (HLHS), a congenital heart defect where the left side of the heart is extremely underdeveloped. From the time I was born until the age of four, I had four open heart surgeries. Of course, I was too young to recall that experience now, and having heart surgeries erased from my memory might be a blessing. However, growing up with HLHS is not.

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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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My Parents' Role in My Relationship With My ACHD

by Meredith Gallo on Thursday, Aug 29, 2019

My fragility is something of a running joke in my family. The Easter after my aortic valve was replaced with a mechanical valve, my siblings and I were preparing for our annual, hyper-competitive Easter egg hunt. As my brother and I lunged at the same Hershey’s Easter egg, my mom, worried about how easily I bruise now that I was on Coumadin, screamed, “Watch out, she’s fragile!” My memory fades at this point, but I’m pretty sure my brother got the chocolate. It didn’t take long for my siblings to take hold of the phrase, “She’s fragile,” and turn it into one of the objectively better jeers my family has produced. 

 

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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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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.