I was diagnosed with kidney disease when I was 22 months old. This came as a shock to my parents – we had no family history of kidney disease that we were aware of and knew very little about it.
I was put on medication along with chemotherapy to delay progression of the disease.
This made for a tough childhood. I struggled with high blood pressure and since my kidneys didn’t work right, my body retained fluid. Between years of taking steroids and the fluid retention, I was very overweight as a child. I had a hard time making friends and I was teased constantly. All I wanted was to be a kid and to fit in. My parents tried to put me in sports but I couldn’t keep up with the kids and I was sick.
I was in and out of the hospital all the time. I missed most of my fifth grade because I was in the hospital. To this day, I still don’t understand fractions. This is not unusual for kids with kidney disease.
In sixth grade, things got really bad – my disease caused me to retain so much fluid that my lung collapsed. I literally couldn’t breathe. Next thing I knew - I woke up in the hospital and I was on dialysis. I was in the University of Minnesota pediatric dialysis unit. I was only 11 years old.
When I finally went back to school after being in the hospital, the kids and teachers didn’t recognize me. I had lost 90 pounds of water weight. I went from weighing 150 pounds to just 60 pounds in only a couple of weeks.
I was an 11-year-old on dialysis and I didn’t understand what was happening. I hated sitting on dialysis for so many hours. I didn’t like the food restrictions and all I really cared about was being a normal kid who could play sports and eat junk food with my friends. But as a kidney patient, I couldn’t do any of those things and for me it was hell.
I had my first kidney transplant when I was 13. My dad was my donor. I remember there being so much hope around getting that transplant. It was going to fix everything. I was told that it was a 100% match and was going to work. Unfortunately, within a few months my kidney disease returned to the transplanted kidney. It only lasted five months before they removed it all together. I was back on dialysis again. I remember thinking…”WHY ME, I thought this was supposed to help!” I also remember how difficult it was for my parents – especially my father who was so optimistic about the transplant working.
Three years later when I was 17, I had my second transplant and I knew immediately when I woke up from the surgery that it hadn’t worked. I felt terrible and I could tell that something was seriously wrong. My body temperature was 105 degrees. They had me on a bed of ice. I was in agony. The doctors did an ultrasound and within a half hour I was back in surgery having the transplanted kidney removed. This transplant didn’t even last 24 hours.
So, I was back on dialysis once again. Only now, I was transitioning from the pediatric dialysis unit to an adult dialysis unit. I can tell you from firsthand experience, there is not an easy process in place for this transition. Suddenly everything had a formal, adult tone to it - it was all about medication and diet and rules and HIPPA laws. I may have been 18, but I was still very much a kid. And this was a lot for a kid to handle. It was a difficult transition.
There I was, doing dialysis three days a week and wondering what would be next for me. I knew I had to go to college but I wondered what my future would be... That was ten years ago. Today I’m 28 years old and still on dialysis. I recently graduated from college with a bachelors in digital design
Dialysis can be isolating at times, especially at my age but it does not affect my positive outlook on life and I am always hopeful for something better. I'm hopeful that in time, research will provide me, and many others, with better options.