Cardiac Journey: Part 1

I decided to break up my Marfan syndrome heart journey into two parts: before surgery and around/after surgery. I started seeing a cardiologist as soon as I was diagnosed with Marfan syndrome. My first cardiologist recommended my parents teach me how to play chess young because an enlarged aorta would really limit my physical activity. At three years old, my life was already being heavily dictated by my medical condition. With aortic aneurysm, the main risk is any kind of major blow to the chest that could cause the weakened and “stretched out” artery to tear. I was given the green light to participate in some of the typical childhood sports since they are so low-key at a young age. But I was warned that once the sports ramped up and became more than post-game juice boxes and participation trophies, I would have to give most of them up. I remember in elementary school, once I was old enough to understand this, being terrified of explaining to my friends why I would no longer be on their soccer team. It wasn’t that I particularly enjoyed soccer or was very good at it, but I hated that its wasn’t my choice. I was ashamed of my health condition and how it made me different from everyone else my age.

When I was 9, I moved cities and got a new cardiologist. I was extremely lucky this cardiologist was comfortable being more aggressive with medication and still letting me participate in sports, as long as they were low impact. I spent middle school swimming competitively, running, and playing tennis. Of course, I was only allowed to do all of this with very regular monitoring. Every 6 months, I would get an echocardiogram to measure the size of my aorta (as well as monitor the function of my heart valves). Taking blood pressure medication, known as beta blockers, and following activity limits, were all just a temporary solution which I was reminded every cardiology appointment. Because of the nature of Marfan syndrome, my aortic aneurysm would continue to grow until it needed to be replaced. The goal was to slow down this growth as much as possible, and I was reassured that I probably wouldn’t need the “big surgery” until my 20s.

The second ball dropped spring of my freshman year of high school. My aorta had reached a point where it was dangerous for me to participate in any kind sports regardless of intensity. I would no longer be able to play tennis. This news was devastating to me. Looking back, I sometimes criticize myself for being kind of dramatic. While I did really love the sport, I wasn’t a particularly athletic kid by any means. Sports were always more for fun, especially because I grew up very aware of the ticking time bomb in my chest. With a bit more perspective, I know it was more the fact that what I saw as my last “normal kid activity” was being taken from me involuntarily. I continued to fear how I would explain to people, especially those that I played tennis with, why I was quitting so suddenly. It was at this appointment that I was also told about my fast approaching need for open heart surgery. I was only 14 and barely through my first year of high school at the time, and I had always thought I wouldn’t have this surgery until at least after college. But I hated feeling so helpless at the hands of my own body, so I told my parents and cardiologist that I wanted to consider surgery sooner rather than later.