I Got a Heart Transplant When I Was 13

Almost a decade later, I know it's a treatment and not a cure.

Mar 21 2017, 12:00pm

There's something to be said about the value of a mural. While you sit on a gurney, ruminating on the fact that mere minutes separate you from injections and anesthesia, beholding something beautiful makes the experience more bearable. It softens the blow. If adult hospitals looked more like playrooms and less like prisons, maybe they wouldn't be so feared.

At the beginning of summer each year I sit on the gurney, naked under a cheap linen gown. I'm there for a cardiac catheterization and biopsy that determine whether or not my heart is in rejection. The anesthesia team asks if I still want to go under with gas before something stronger is given through an IV. The answer is always yes. Propofol, the drug used for sedation, burns my veins. 

So, I opt for the gas that numbs my senses beforehand. I sign a consent form. The primary risk of the gas is that I could hemorrhage out of my femoral artery—where the catheter is placed—but abstaining from it altogether is far more terrifying. I lie on a table and drift from consciousness, the masked faces of doctors blocking the fluorescent lights. When I wake up I will have another scar added to my collection. But the track mark-like dots on my groin are nothing compared to the one I wear on my chest.

When I was thirteen I received a heart transplant. I was born with a type of dilated cardiomyopathy, a congenital muscular abnormality that prevented my heart from pumping efficiently. Often there is a clear genetic link, but nobody knows why mine occurred. The story goes that my parents were told I needed a transplant during infancy if I was to live to see my first birthday. After doing research, they decided to manage my condition with medication for as long as possible, to allow me to grow, plus something about more hearts being available, and a better chance of survival the bigger I got.

Instead, my childhood was spent taking pills normally prescribed to artificial-hipped retirees and trying to explain to my peers why I was unable to participate in gym class. I never felt normal, something every kid wants. In eighth grade, my physical decline seemed to accelerate. That autumn I could not to stay awake more than a few hours at a time, and regularly fainted from exhaustion of after expending any excess amount of energy. One night in early October I told my mother I couldn't catch my breath. We drove an hour to the hospital and I was admitted to the emergency department and given the "work up." I was then placed on the transplant waiting list, and within a week had a brand new heart.

In an ideal world—or on Grey's Anatomy—the surgery would be a seamless solution to an unfortunate beginning. But it wasn't. A transplant is treatment, not a cure. As hard as I have tried to be normal, living like the bad days are behind me is unrealistic. I have to consider the condition of my heart in every decision I make. If I miss just two days of medication I will likely go into rejection. I can't eat grapefruit, pomegranate, any meat that is raw or vegetable that is unwashed. I have to stay hydrated at all times or risk kidney problems. I have been advised to wear hospital face masks on public transportation—something I admit I don't do enough. I cannot smoke, I should not drink too much, and unprotected sex is out of the question because of increased risk of STI infection (having this talk with a partner is lots of fun).

When I got a tattoo last year (against medical advice), I did extensive research on the shop's safety codes and went on a course of antibiotics just in case the tools weren't completely clean. A blood infection would be the quickest way to take me out. I am supposed to keep two doses of medication—one am, one pm—with me at all times. I don't have a lot of room for the spontaneity of your ordinary 22-year-old life.

Flu season, particularly in college, is hell. Despite getting the flu vaccine every year, I have had the flu twice as a student. It's true that before the transplant my illnesses tended to last longer and be more severe, but now there are different concerns. When I get sick I can usually bounce back pretty quickly, but fears that common cold and flu symptoms could signal rejection are ever present, as organ rejection manifests with almost identical symptoms. It shows up as anything from general uneasiness to fever to arrhythmia. The term "flu-like symptoms" is thrown around a lot in the medical community, but it takes on an entirely new meaning when simple malaise could signal a body that's shutting down.

I will continue to take medication for the rest of my life. Over the years the dosages have decreased, but I still take so many pills I store them in a box the width of an iPad. They make my whole body more sensitive to the heat and sun, so summers drain my vitality. Winter brings cold air that stings my scars on contact. 

Every fall I am haunted by memories of the ICU—persistent beeping and IVs in both wrists. October 12th, the anniversary of the surgery, brings a lot of conflicting emotions; often with tears. The years of unstable health have taken a toll on my psyche, and I am generally pretty anxious as a result. Some days I just feel very defeated by the entire thing. Talking about it at all is unnerving, but that's something I am learning to deal with.

I graduate from college in May, and in some ways life will become more challenging as I enter the adult world. The unreliability of the country's healthcare system has been at the top of my list of concerns. When the Affordable Care Act was passed in 2009, my family and my doctors enjoyed a collective sigh of relief. While imperfect, it's a big reason I have medical coverage. And for someone who racked up over a million dollars worth of medical expenses before high school, it means everything. The knowledge that I could not be denied coverage because I have a pre-existing condition has given me indescribable peace. I'm not sure what I'll do if ACA is repealed without a comparable replacement, and that uncertainty has awakened a fear within me I haven't experienced since I was told I needed a new heart in the first place.

Later this year I will celebrate a decade with my heart. My life as a transplant recipient is complicated, but with a little extra planning I can do almost everything people operating with the hearts they were born with can. When I walk down the street nobody knows my torso looks like the work of an amateur butcher. I'm not all that different on the outside. But it's a whole different story under my skin.

Update: A previous version of this story states that "The primary risk of the gas is that [the writer] could hemorrhage out of [her] femoral artery," while the primary risk of the procedure itself was hemorrhage.