By Kelly DiMaggio
12 Jan

A Decade Gone By: Then and Now With CHD

Thursday, January 12, 2017

When presented with the question "How different were you and your CHD 10 years ago compared to today?" my initial reaction was to laugh out loud. I know that probably seems like somewhat of a strange reaction – after all, there isn't really anything funny about congenital heart disease (CHD). I suppose the laughter stemmed from the irony of things and the fact that on the surface the question seems so simple, but really has such a loaded answer. In a nutshell, the answer is that my CHD and I are drastically different today as compared to 10 years ago. This time 10 years ago, I was 18 years old and beginning my second semester at Dickinson College. Being born with Hypoplastic Left Heart Syndrome (HLHS) and having three open heart surgeries, countless cardiac catheterizations, and weeks of hospitalizations all before the age of eight, I've certainly always been aware of my CHD. However, my parents always made it a point to not treat me any differently. Aside from my semi-annual visits to the cardiologist and having some physical activity limitations (not having to run the mile in gym class), I was treated just like any other child. I was then, and often still am today, fearless. My HLHS really didn't bother me, in fact, half the time it didn’t even cross my mind. It was something I knew I had and something I knew would be complicated down the line, but otherwise it didn’t affect me much.

At 18, I was on my parents' health insurance and blissfully unaware of the stress that is insurance and medical bills. When I was 18, I could "keep up" with those in my age group. I was able to do just about everything the majority of my peers were doing. Now 10 years later, that is no longer the case. I've found that I feel the side effects of my HLHS on almost a daily basis. I've found that I really need to slow down what I'm doing. I can no longer juggle tons of commitments or running around on the weekends. I also require so much more sleep than ever before. Without a good night's rest, I feel poorly for a solid three days or so. I joke that I operate best "during the day" as late nights are something I can no longer physically handle.  I'm so lucky though, I have the most incredible friends. Friends who completely understand and respect me needing to do what is best for my body. Friends who bend over backwards to make sure I know they understand that I can't handle bachelorette parties and after parties and that they simply want me as a part of their bridal party. I cannot stress enough how wonderful the people in my life are – thank you for all of your support!

Many of my friends are now beginning the process of starting their families. Unfortunately, due to the specifics of my HLHS, I am unable to biologically carry a child. Although my husband and I are huge advocates of surrogacy and adoption (he is adopted himself), given our financial situation due to my health and my lower energy levels, I'm not sure if having a child is something I could even handle, regardless. Although this is something I am actively coming to terms with, there are days where it is certainly still very hard.  

As a single ventricle patient, my reconfigured heart is doing double the work each and every day, and has been for 28 years now. Instead of rarely thinking about my HLHS, there are few days now when I don't think about it. Over the past few years, I've had some mental health battles rooted in having a chronic health condition and past traumas, and as mentioned before, the financial stress gets me every time! But for every negative or stressor I've experienced, I've experienced more positives than I ever thought possible. I have participated in regenerative medicine research trials, and been a guest speaker at my local ACHD clinic. I have met some incredible patients and families alike. This past year, I was able to attend an event with 6 other adult HLHSers. I have the Adult Congenital Heart Association (ACHA) to thank for the start of my blossoming as an adult with CHD. Thanks to ACHA, I have become an active fundraiser and advocate. I have walked in the Congenital Heart Walk and I have been lucky enough to be a featured blogger. ACHA helped me find my voice and grow into my identity with CHD. I can't wait to see what the next decade brings!

               

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