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Destigmatizing organ donation is a matter of life or death

Destigmatizing organ donation is a matter of life or death

Anyone who knows me knows that I am a strong advocate and volunteer for various organ donor networks, groups and affiliations. I work with hospitals, procurement centers and nonprofits to try to increase the number of registered donors and to break the stigma around the topic. I devote my time, my energy and my emotions to the cause because I care so strongly about saving those 10,000 New Yorkers currently on a waiting list – a horrifying spot I found myself on just around four years ago. 

When I was 19 years old, I was unexpectedly diagnosed with cardiomyopathy and told that my only chance of survival was a heart transplant. Prior to that, I had never paid much attention to the topic. Actually, I had never even talked about it. I knew that the little red heart on your license was good, but I never looked further. I never asked questions until it was me. Me, in a hospital bed, relying on machines to keep my failing heart alive. 

Five months later on April 20, 2016, my new, healthy heart was transplanted. I have been my healthiest self since then, something I have both praised and struggled with over during my recovery. It’s a hard concept to grasp, someone dying so that I could live. Trust me, I feel the survivor’s guilt every single day. But that’s why I volunteer. If I can change just one person’s mind about this controversial topic, I will feel I am doing my donor’s legacy justice. 

In my days tabling at enrollment drives, speaking at hospitals and attending award galas, I’ve heard it all. From, “Ew, why would anybody do that?” to, “It’s true that the doctors won’t save me if I’m dying and they see I’m a donor, you know,” and even, “I just don’t want anyone to have any parts of me.” People have said the above straight to my face. Looked me and my scars up and down and spewed outright lies. It can be discouraging and daunting, but I set a goal to make sure that the public is as informed as possible. 

First of all, it is not true that doctors won’t try and save you. According to LiveOnNY’s website and the volunteer training classes I’ve attended, the donation only occurs after a physician who is not affiliated with donation declares a person dead. Medical professionals will always put your best needs first and do everything in their power to save you. 

Second, I know this is a personal choice, I’m not asking you to give up your own beliefs – I’m asking you to just educate yourself. Research shows that most major religions support the principles of organ donation and transplantation, while realizing it’s a personal choice. Obviously, I (and any other advocate) respect your decision, but don’t base it off of false facts. 

Third, don’t rule yourself out of being a donor due to medical conditions or age. Doctors make that call after a careful assessment at the time of donation. The oldest donor was 93 years old. Pretty amazing, right? 

And another thing – organs are not for sale. I didn’t buy my heart on eBay, that’s not how this works. It’s actually written in U.S. law that the buying and selling of organs is prohibited. 

Other countries have an opt-out system of the registry, meaning that consent to donate is assumed unless evidence that you don’t want to donate is made known. In the United States, we have the furthest thing from that; we have a crisis and a shortage, with lives being taken every day. 

I know it’s morbid and weird to talk about death and a future that is so far away. But you know what is also morbid and weird? The fact that every 18 hours, another person dies on the waiting list. It’s a hard topic no matter how you look at it. It’s hard for me as a recipient and for my family as caretakers, and I can’t even fathom how hard it is for donor families. My mission is just to get people talking about this outside of the DMV when renewing their license. I want people to talk about this as if it were normal and casual. I want to erase the stigma and brighten the topic. I’m living proof that there is a bright side to tragedy. 

In May, I’ll graduate from Hofstra, something that almost wasn’t possible a few years ago. I have my whole future ahead of me now – a healthy future. I am thankful every day for the second chance that I was given, and I’m reminded of it every single time my heart beats. 

Oct. 10 is Donor Enrollment Day. Please consider signing up and saving lives like mine. If you’re not comfortable doing so, I completely understand, but please consider doing some research and educating yourself; you could save a life like me one day. 

Taylor Clarke is a heart transplant recipient and volunteer with LiveOnNY. As a senior journalism major, she serves as the editor-in-chief for The Chronicle. You can find her on Twitter and ask any questions at: @Taylor_R_Clarke.

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