Society glamorizes illnesses in movies and television shows, but trust me living with a chronic disease is no Hallmark movie with a happy ending. In reality, there is no glamour involved and often the endings are unpredictable. At the age of 13 while every other girl was preparing for high school and drooling over boys, I found myself struggling to make it through a shopping trip or a movie without becoming fatigued or nauseous.
Other than the struggle to get through daily activities, I was a happy, basketball and tennis-playing teenager, but deep down I knew something was wrong. One doctor said I was depressed, others didn’t think anything was wrong or my symptoms didn’t add up, but I kept fighting for a diagnosis. Many doctors and tests later, I found myself in a stark doctor’s office on a cold February day in 2010 learning that my suspicion that something was wrong was in fact correct. I was diagnosed with chronic kidney disease secondary to chronic nephritis, specifically Membranoproliferative Glomerulonephritis type III (MPGN III).
The thought of my own immune system attacking my body was frightening and by the time I was diagnosed, I had about 30% kidney function remaining. I did not let my diagnosis slow me down and for many years I stayed active as though I didn’t have a disease. I tried my hardest to hide my disease because the friends I did tell often did not understand or would distance themselves, so most people did not know what I was facing on a daily basis. The reality was, I was so fatigued that I had to take naps as soon as I got home from school to have the energy to function the rest of the night, the swelling in my legs got so bad at one point I couldn’t get my shoes on to play tennis, the high blood pressure meds would make me dizzy every time I stood up, and the steroids left me with superficial effects like facial swelling and acne.
My kidneys may have declined as my high school career went on, but I remained positive and did not let it stop me from excelling. I found serenity on the tennis court and played all four years even as my disease continued to throw more curveballs my way. I adapted to the fatigue by playing doubles tennis instead of singles and even though I couldn’t be a leader on the court I was able to be one off the court as Varsity Captain my junior and senior year. All the accomplishments in tennis proved to me that despite having chronic kidney disease, I can adapt and do anything I set my mind to. By my junior year, my disease began to progress faster. A kidney biopsy led to my hemoglobin dropping, which led me to have to give myself EPO injections. Test results started coming back worse and worse, yet I was as determined as ever to keep going and continue to appear healthy to the world. A week before my high school graduation, my nephrologist looked me in the eyes and said there were no more medicines or treatments to try, it was time to be listed for a kidney transplant in hopes of avoiding dialysis as long as possible. To me it was just another bump in the road, I’d do the testing, get placed on the waiting list, and enjoy my last summer at home before heading to college in the fall.
I never realized just how big this bump in the road would be. I was scheduling ultrasounds, echocardiograms, and tissue typing tests around my senior banquet, graduation, and parties. I was listed days prior to my 18th birthday, giving me pediatric preference and ultimately making the waiting time shorter. By the end of the summer, I found myself in an all to familiar white walled, sterile room waiting for my nephrologist. It was supposed to be my last appointment before moving to college, but my nephrologist had other news. He advised me against starting school for fear I would need to start dialysis or ‘the call’ would come while I was away at school. My heart sank; it was as if all the years of working to keep my GPA up, the college visits, the applications, the scholarships, the time spent getting to know my roommates, and everything I had worked so hard for was gone in the blink of an eye. Everything about my future came to a screeching halt in that moment and I realized that this was more than a speed bump; this was a hill that I was just starting to climb. I withdrew from Baldwin Wallace University the next day and prayed that everything I had worked so hard for would be waiting for me when I could begin college. Every day that I waited for a kidney, I questioned whether I’d ever be able to receive the education needed to obtain a job that could adequately help me cover my medical expenses in the future or if I’d need to rely on the help of others for the rest of my life. It wasn’t until the night of November 19, 2014, after 6 months of waiting that my future began to look bright again. I received a the gift of life in the form of a new kidney and I could finally start living again.
I am constantly reminded that a transplant is a treatment, not a cure. I appear healthy to outsiders, but I know I am living on borrowed time. I take medications that cost more per month than a car payment and at times seem to be harming my body more than helping. I visit the lab and doctors more times in a month than most people do in a year and am more comfortable in a medical setting than a classroom. I am reminded daily that someone died in order for me to live and so after the transplant my main motivation to get better was so that I could go to college. I built up the stamina, learned how to take care of my new gift, successfully moved into my dorm, and just finished my first semester at BWU! I struggled and continue to struggle with the idea that someone had to give up their life in order for me to continue living mine.
Also, it is difficult to wrap my mind around the idea that I may never know anything about my donor or my donor’s family. I have found ways to cope with these feelings as well as living with a disease that help me move forward. I have kept a journal since my diagnosis and continue to do so to this day. I am able to write all my personal thoughts, fears, emotions, and the day’s struggles down, shut the journal and leave the pain in the past. Journaling also allows me to look back when I am having a bad day and remind myself that I’ve survived worse so I can make it through whatever is bothering me.
For others facing the same or similar medical issues as me, do as Dory says and, “Just keep swimming”! Don’t ever stop living or give up on what you love to do because of a disease. Challenge yourself to try your hardest to fight and live every single day because you don’t know what tomorrow will bring. Do what makes you happy and share your story because everyone has a story, but you never know whom you’re helping when you share yours. Without my diagnosis, my disease, or my transplant I would not be the strong, confident young woman I am today.
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