I was diagnosed with hypertrophic cardiomyopathy (HCM) at just nine years old. While this incurable disease made for thrilling plot twists in films ("Beaches") and television shows ("One Tree Hill"), living with it was anything but thrilling. It was a slow killer that was unpredictable, incredibly stressful, and absolutely frightening.
HCM targets the heart muscle, thickening it over time and usually targeting one side of the heart. Due to the heart’s increased size, it makes it super-tough for blood to leave the heart, ultimately forcing it to work harder.
I was always told that any major physical activity could result in sudden death, so I played it safe all my life. The only upside was getting to skip the ever-dreaded gym classes all through my junior high school and high school years. I never was one to talk about or announce my medical dramas to others and thankfully made it through school without students annoying me about getting out of gym.
Keeping up appearances and strictly following my hardcore medication regimen helped me live a normal life, at least to me. "Normal" was stopping every two blocks because I was out of breath, a chronic harsh cough that seemed to worsen over time, and keeping social events relaxed.
This was the last time my life would ever be this degree of normal.
Over the years my heart quietly got worse, weakening so much that it began singing its swan song the summer after my high school graduation. That July's surgery and scars would be the first of many.
I got an AICD (a hardcore defibrillator) placed in my abdomen. The little device sat under my muscle in such a way that it made an ab-like outline on the surface of my skin. It jokingly became the ab I always wanted but never could have because of my lack of exercise.
Coincidently, my surgery was planned right before my college orientation weekend. After much debate, I decided to attend that exciting weekend, bandaged up and all. Looking back, it was not the best decision, as it was my first time changing incision dressings on my own. The process was both eye-opening and scary.
Thereafter, my college experience was anything but normal. My rapidly declining health could no longer be kept secret. I knew something was terribly wrong when my professor, who was in his late 60s and a heavy smoker, told me to quit smoking after hearing my cough. I've never picked up a cigarette in my life. I later learned that my slightly wet cough was from the excessive fluid buildup from all those years living with HCM.
Freshman year was completely exhausting. Simply walking to my car parked a few steps from a building left me gasping for air. My heart was working overtime just to beat and took every ounce of energy to do so.
I unknowingly suffered two heart attacks that summer, both of which were saved by my “ab.”
I barely made it to sophomore year when my heart really made itself known. I knew it was serious when I could barely keep water down and inched my way to class in an ultra-casual outfit, no makeup and a messy ponytail -- a look I never dared to go out in previously. I found out the following day that I was in the late stages of heart failure. It went on for so long that my surrounding organs started to give out from overcompensating for my weak heart.
I was brought into my hospital for a full evaluation and was greeted by a new doctor who coldly told me that I needed a heart transplant. The moment he left the room, I broke down in my sister’s arms. I could not understand how my heart had worsened so quickly and why I needed a transplant way earlier than initially predicted. I was listed on the national organ transplant waitlist that January (2009).
From undergoing painful biopsies to countless tests and treatments, I basically moved into the hospital. College seemed like a distant memory as my heart and fighting to live become my only priority. I was granted a short stay back home which resulted in an unforeseen stroke. If my failing heart wasn’t enough trouble as is, this stroke threw me for the biggest loop.
I was essentially helpless, relying on my older sisters for basic tasks like bathing and eating, which made me feel extraordinarily guilty. I felt awful for taking them away from their exciting and busy lives to take care of me. It was hard, and I was upset for not being able to be as strong as I had always been, and I finally cracked. I stayed in the hospital for what seemed like an eternity and was sent home for just one day.
I was rushed to the ER that evening and barely made it through the night. It looked as if I had just run a mile sitting at rest and was taken in for emergency open-heart surgery the following day.
My ab got a new friend that day as doctors surgically placed in a left ventricular assist device (LVAD) that afternoon. This device was attached to my heart, coiled all the way down and exited through an opening in my abdominal area with its end attached to a battery pack. My heartbeat was replaced with the slow hum of this device and soon became a student-doctor's dream. One by one they came, each with their stethoscopes, standing in line for a quick listen.
After another extended stay, I was finally sent home with my new machinery. Loose-fitting tops and big totes became necessities as I tried to adjust to my new normal. I patiently waited for my special call, hoping, day after day, that my cardiac team would call with good news of a new heart. Weeks passed and still nothing.
I accepted that it would be months or maybe years before I could see a heart and would have to learn to just let life go on. On June 7, as I was watching a late night airing of “The Nanny” (I am a flashy girl from Flushing, after all), I finally got my life changing call.
In the early hours of June 8, I finally was transplanted with my brand new heart. No more foreign devices, no more harsh coughs, and finally a normal heartbeat.
My original heart was the stuff of legends. A normal heart should be no longer than your fist. Mine was the biggest the hospital had seen and took up most of my chest cavity.
After getting my chest cracked open twice in such a short window, earning a large number of scars through the multiple surgeries and subsequent biopsies, each moment was worth the feeling of a new healthy heart.