By Kelly DiMaggio
7 Jul

What Heart Defect?

Tuesday, July 07, 2015

Last month I had the pleasure of tuning in to a webinar entitled “When is Transplant an Option in the ACHD Patient?” presented by ACHA. I must admit, the presentation certainly stirred up a lot of emotions in me, many of which I’m still working through.

Writing has always been my solace, but it’s been hard to capture the rollercoaster of emotions and experiences in words. Yet these are the narratives that must be told. CHD patients are living well into decades that many physicians never thought they would see, and it is up to us to keep paving the path forward.

As a single ventricle patient (HLHS) with a Fontan physiology, I (along with many others on the ACHD spectrum) had always been told that down the road I may need a heart transplant. That thought alone—to put it bluntly—is terrifying. But when you do start to come to terms with it, it actually becomes surprisingly soothing—a light at the end of the tunnel.

Imagine my surprise when I tuned in to the webinar and learned more about the complexity of the operation for those with congenital heart defects, particularly those with a single ventricle. The risk of complication is higher than that of an individual who needs a transplant due to non-congenitally-induced heart failure. The risk of bleeding is increased due to scar tissue from prior surgeries and collateral vessels in those who are cyanotic. Some single ventricle patients develop liver dysfunction, arrhythmias, and fluid retention as they age, all which further complicate transplant in a single ventricle patient.

So I take all of this in, and I start to begin to process it. Yes, it’s scary, don’t get me wrong. Yet I can’t shake this one question from my head—one that my family and friends say often.

What heart defect?

That was one of the first things out of my dad’s mouth when I got back from Mexico this past spring and showed him pictures of me ziplining upside down. Of me snorkeling and swimming for hours on end.

What heart defect?

Or what about me living on the remote island of South Caicos for three months, studying marine biology and swimming with sharks daily?

What heart defect?

It’s quite the paradox, the whole “what heart defect?” question. I pride myself on living a normal life, completely surprising people when they find out I have a complex medical condition. But although we strive to blend into the normalcy of health and to do all the things one with a healthy heart can do, we also want you to know. To ask questions. To educate. To advocate. To donate, in some capacity, if you so wish.

The most important takeaway from all of this is that I am blessed in the here and now, and I am happy. I have traveled. I graduated from college and found a wonderful career path. I married the love of my life and together we bought our first home. I have made incredible friends, have a wonderful family, and have made fantastic memories. As they told me while ziplining and repelling in Mexico: Sometimes the only way is jumping, I hope you’re not afraid of heights.


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