Column: Me and My Chronically Broken Heart

Like many people this Valentine’s Day, I’ll be dealing with a broken heart. But mine doesn’t come from a failed relationship or merely being single. In fact, my broken heart has nothing to do with this holiday at all. 

That’s because I suffer from a condition called cardiomyopathy, my heart doesn’t pump blood at the same efficiency as a normal heart and I’m at higher risk for heart failure — quite literally, a broken heart. 

Looking at me, you might not know I suffer from a serious condition. Conditions like mine don’t have very many visible markers. But beneath the surface, the signs are there. You’ll hear it in my notorious sighing and my answer of “tired” when asked how I’m doing. 

For me, fatigue is the most notable aspect of my heart condition. No matter what I do, I’m always tired. I’ll wake up tired, go to bed tired and be groggy throughout most of the day. The common solution of drinking caffeine doesn’t help as that only prevents me from going to sleep and increases my heart rate. Ironically, the beverage that keeps me energized the most is plain cold water. But fatigue is only one symptom, and it’s not the scariest. 

Twice in my life I’ve had to have my heart restarted — a process called electrical cardioversion — due to arrhythmias caused by my heart condition. These were some of the scariest times in my life. The arrhythmias caused my heart rate to spike, my breathing to become labored and activities like walking and standing to become a challenge. 

This was the first time I realized this condition could kill me. I’ve never forgotten that feeling and live in fear that someday an arrhythmia will occur and I won’t be able to get to hospital in time. Being told at 17 years old that I might require a pacemaker or heart transplant later in life is terrifying. 

Because of my condition, I have to be very careful about what activities I take part in. I can’t really workout that much because of how bad the fatigue can get plus the increased risk of cardiac arrest. I can’t play contact sports like football or hockey and I can’t join the military. I’m always cognizant of where the nearest defibrillator is and even had to fight with the university to get one on my floor when I lived in the dorms my second year. 

There’s also the things that aren’t explicitly banned but I try to avoid — either because I can’t get a straight answer from my doctors or just because they’re too risky. Things like getting drunk, smoking weed, riding a roller coaster or getting a tattoo fall under this category. In some cases the risk is clear, but in others it’s not. I don’t want to be in an altered state because I can’t troubleshoot my own body if something doesn’t feel right. 

What harms me the most is that I’m not a good patient. I’m stubborn and don’t like asking for help. I’d rather deal with the side effects of not taking medication over calling a doctor because I ran out and forgot to order a refill in time. I also don’t drink water as much as I should and sometimes engage in risky behavior like biking 40 miles on my e-bike. 

Even when emergencies do happen, that stubbornness doesn’t go away. The last two times I’ve ended up in the emergency room with heart problems, I walked myself into the emergency room and waited in line to be seen. Last semester, when I had chest pain that was bad enough to warrant an ER visit, I went to class, took the shuttle to Water Tower Campus, met with a writer and emailed the professor whose class I would be missing before walking the half mile to Northwestern’s ER. I’ll be the first to admit that what I did was really stupid. 

Living with this condition has taught me to be grateful for the fact that I’m still kicking. I’ve realized I don’t have as much time as I think so I’ve learned to jump at opportunities. I travel as much as I can, go for long walks and try to enjoy the world around me. 

This attitude is best summarized by my answer when asked how I’m doing — tired, but OK. 

I’m tired because living with this condition sucks and I would make it go away in an arrhythmia-shortened heartbeat, but OK because I’m not dead yet and still able to live my life on my own terms — despite my broken heart. 

Feature image by Aidan Cahill / The Phoenix