Before I got sick, I was just a normal, healthy teenager. I was in high school, was very involved in theater, and was thrilled to be the first of my friends to turn 16 and get my driver’s license. I was 16 and beginning my junior year of high school when I was officially diagnosed with Microscopic Polyangiitis, a rare autoimmune disease that is a form of vasculitis and normally affects middle-aged people. Essentially it causes small blood vessels to become inflamed and leads to organ damage and failure. Getting an accurate diagnosis was a challenge, but I was fortunate to have been sent to Children’s Medical Center in Dallas where the doctor I was assigned to had seen my symptoms a year earlier in another young teenage girl. I remember that he kept telling me how similar my case was to this other patient; he was able to take precautionary steps with me that he hadn’t known to take with her.

I spent two years doing peritoneal dialysis while returning to high school. Thankfully I was never so restricted that I couldn’t live something of a normal life, but there is one moment that sticks out in my mind from when I was a patient at Children’s. I had a dialysis catheter coming out of my abdomen, my IV in my hand, my central line near my collarbone, and I was told not to get any of it wet. All I wanted to do was wash my hair, and I couldn’t. I had to kneel over the edge of the shower and have my mom do it for me.  Being 16 years old and needing your mom to wash your hair because you physically can’t was the moment where I felt helpless. It’s incredibly difficult to go from being a free and independent young person with few real responsibilities to suddenly having to depend on your parents again, stuck to all these machines, cooped up in a hospital room in a city where you don’t even live. It was a huge step backward for me and it took a lot not to slip into a constant state of “why me?”.

Once I returned home, my school was wonderful in catching me up on all the work I missed for the six weeks I was out of school in the fall semester. I still managed to participate in theater by doing lighting and behind the scenes work, and I was grateful that they made a place for me and included me so that I could do something that felt “normal” to me.

Fast-forward almost two years – I’d been doing my dialysis at home every night, had graduated high school on time, and was hoping to go to college in the fall. I’d been on the UNOS list for a couple months, but my dad was testing to be my donor. Due to some minor health issues of his own, he was unable to donate. My parents sat me down, explained that Dad couldn’t donate, and we would just try again after his health issues were under control. I was devastated. I went back to my bedroom, cried, and called my boyfriend to tell him what was going on. Not 15 minutes later, my mom was banging on my bedroom door telling me that I had a phone call and it was the transplant people. They told me they had a kidney for me. I couldn’t believe it – it was a complete whirlwind. I had been told, literally 15 minutes earlier, by my parents that the transplant wasn’t happening, and here I was all of the sudden packing a bag and getting ready for the two-hour drive to Dallas to get a kidney. I honestly don’t remember a lot of what happened next; it’s all a blur of emotions and excitement. I got to Dallas that day, and the next morning I had the transplant. My new kidney started working on the operating room table.

Someone becoming an organ and tissue donor is one of the most selfless things they can do for another human being. Especially in a situation like mine where the donor passed away and will never know how much it means to me that she gave me this gift. I have been in contact with my donor’s family. Her name was Emilie, she was from Kentucky, and she was 23 when she passed away. I’ve met her mother and her stepfather, and a few other family members once, not long after my transplant. We met at Baylor Medical Center, where I had the transplant, and I’m sure I thanked them, but that seems so inadequate. The right words to express my gratitude just don’t exist.

Because of my transplant, I’ve been able to do anything I want. I currently have two associate’s degrees and am halfway through completing my bachelor’s degree. I have a job that I love working as an X-Ray technologist in surgery in a large hospital near my hometown. I’m in a serious, committed relationship with a man I love. I get to travel and see the world, and spend time with my family and friends, and just live my life. I am 15 years post-transplant and have, for the most part, been healthy.

When I was a student in the X-Ray program, I was able to be in the operating room and watch an organ recovery.  It was a surreal experience for me – watching the surgeons work, hearing the transplant coordinator on the phone letting the hospital know that organs are on the way, and thinking about this person on the operating table who is giving this amazing gift to multiple people and hoping that their family can understand one day how much they changed someone’s life. It’s been something like six years since I observed that procurement, and I’m still sitting here with tears running down my face as I write it. It was such a beautiful moment to witness. I know what it’s like to get “the call” from someone telling me I’m getting an organ. I know that several people’s lives are about to be changed forever.

I suppose that’s what I want people to think about if they’re on the fence about being an organ donor. Their loved one might be gone, but they’re never forgotten. There’s not a day that goes by that I don’t think about Emilie, my donor. I will never stop being grateful for her gift. My transplant does not define me, but it has shaped me enormously as a person. I strive now to live a life that not only I can be proud of, but one that my family, my donor’s family, and Emilie would be proud of.

 

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