Scooting4Donors: Why my journey with kidney disease is taking me across the country

I have been made stronger by dealing with kidney disease for my entire life—all 42 years of it. I was born with Eagle-Barrett syndrome and only about 10% kidney function. I had a “normal” childhood for the first 10 years of my life—I went to school, played with friends and fought with my brother. Even with an occasional hospital visit for tests, kidney disease was never a big distraction from my life.

That all changed when we found out my kidneys were in complete failure when I was 10. Just before my 11th birthday, I was put on the transplant waiting list and started dialysis. I was on hemodialysis four hours a day, three days a week during the summer, so I wouldn’t miss any school, until my mother donated her kidney to me on August 26, 1987. It would be the first of four kidney transplants for me. Because of her donation, I was able to finish elementary school with the rest of my class.

Most kids go through many changes when they transition to middle school, but my changes also included the side effects from my transplant medicines—overgrowth of hair, moon face and weight gain. It was a rough three years, but I felt healthy enough to run for, win and serve as student council treasurer. My family moved from Florida to Georgia during 8th grade, and I became a patient at a children’s hospital in Atlanta. It was the first time I was in a children’s hospital and the first time I realized I was not the only kid living with kidney disease or a kidney transplant.

My first transplant began to fail during my senior year of high school. I received another transplant from my father, which allowed me to complete high school. Five years later and in the middle of college, I was back on dialysis and once again needing a kidney. This time, my brother’s lifesaving donation enabled me to graduate with a college degree. I received my fourth kidney transplant from a deceased donor in 2016.

Since I have been fortunate enough to receive the gift of life four times, I have been giving back to the amazing kidney community as much as I can. I volunteer at a camp for children with kidney disease and competed with Team Georgia and Team USA in the Transplant Games of America and the World Transplant Games. Inspired by my last transplant and the film, The Terry Fox Story—a true story about a man who ran across Canada after losing his leg to cancer—I decided to start a trip I am calling Scooting4Donors. The trip will take me, on my mobility scooter, across 14 states and 5,000 miles to raise awareness of organ donation and encourage others to register as organ donors.

I left my Scooting4Donors starting point of Miami on April 1. As I write this post now, I am in Hampton, Georgia, five weeks and over 1,000 miles into my Scooting4Donors trip. In these five weeks, I have already registered nine people who have committed to become lifesaving organ donors for others. I will finish my Scooting4Donors trip sometime in October in San Francisco. You can follow along with me on my website, which I will continue to update along the way.

Posted: | Author: Matt Schneider

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