Taking Heart

I never thought about death. 

While I mourned the loss of loved ones and understood that, sometimes, life is cruel in the ones it takes, for me, death was never a concern. I had always lived a healthy life so there was never a reason to think about something so morbid. What I’ve learned, though, is that life is fragile. It can change in any given second. When I was 19 years old, the entire life I knew came crashing down.

Four months before everything changed, I was setting up my dorm room and beginning my sophomore year of college. I was living with my best friends and loving my classes. I was walking to class one day when I started to realize something was wrong. A short walk felt like climbing the world’s tallest mountain. A short flight of stairs? My greatest obstacle. At first, I thought it was a vitamin deficiency and doctors agreed. Eventually it got so bad that getting out of bed felt like a high intensity workout. 

I was forced to withdraw from my favorite place. It was unfair and I couldn’t understand why this was happening to me. I didn’t realize I was about to begin the craziest journey of my life. I was losing weight in the blink of an eye. I had no energy. I visited doctors all across Long Island. No one could figure out what was happening to me — a formerly very healthy and active college student. 

In December of 2015, doctors discovered right before it was too late that it was my heart. At the time of my diagnosis, my heart was operating at 5% and there wasn’t much time left to act. I was immediately placed on an Extracorporeal Membrane Oxygenation Machine (ECMO), which essentially pumps and oxygenates blood outside of the body to allow the organs to rest. My family was told by doctors that I would need a transplant to survive, and within hours I was airlifted to the nearest transplant center where a team of nurses, doctors and surgeons would take on my case. Several days after arriving, I underwent surgery to have a Left Ventricular Assist Device (LVAD) implanted — a high-tech, battery-operated mechanical pump that helps the left ventricle of the heart pump blood to the rest of the body. The device is worn like a cross body purse and is bulky and heavy to carry. 

The next clear memory I have is being in a hospital, with an array of sounds and people shuffling around. I remember my family calming me down and telling me that everything was going to be okay. I remember kind medical professionals — who would later feel like family — explaining that I needed a new heart, but I was going to be alright. 

Clarke is active in the donor comunity, helping people sign up to become organ donors that could save someone’s life.

The next five months were hard. I was to remain in the hospital until a donor heart became available. Because my body had endured such trauma, I had to learn how to do basic tasks again like walking, standing up and even holding a toothbrush. It was hard to adjust to this new normal, all while trying to grasp that at any second, a call could come in and I would be rushed into immediate surgery. My daily routine revolved around hourly medication, IVs, getting bandages changed and trying not to look too far into the future.  

On April 19 2016, the news was delivered that a perfect and healthy heart was available and ready for me. Suddenly, I was being prepped for surgery and family members were pouring in and out of the room, showing their love and support. I was weirdly calm but eager. I was ready. The next morning, I was wheeled down toward the bright, open operating room where I kissed my parents goodbye. The automatic doors opened and the nurses calmly guided me through. Thus began the rest of my life. 

It’s been three and a half years since my surgery. I am doing better than ever before and have been blessed beyond belief to have had no complications post-transplant. It’s definitely some kind of miracle, the fact that my body was able to bounce back so quickly and respond well to any and all treatment. I returned from my long five-month stay in the hospital just 12 days after my surgery and was able to return back to my normal life. Every six months I visit my transplant center for a biopsy, where my cardiologist will test pieces of my heart’s muscle tissue. My results have been perfect — shocking for anyone who knows just how sick I once was. 

Doctors may never know why this happened to me or what exactly caused my heart to fail. They believe it was something that I was born with that started to show signs later in life. For so long I wanted to know. I was so angry that my body would betray me like that and put me through such a traumatic series of events. But as time passed, I became grateful. I am grateful for my scars, each and every one of them. I am grateful for the support I had along the way. I am grateful now that I can use my story to educate and inspire others about the tragic beauty behind organ donation. But most of all, I am grateful for the gift that is modern medicine. It’s the reason I’m alive today and it’s the reason I now have my whole life ahead of me.