Up until my kidney transplant, I’ve had twice monthly or monthly nephrology appointments since I was born. I have gotten my labs drawn every two weeks, sometimes more frequently, my entire life. We were able to remain off dialysis with a combination of medications and dietary restrictions/modifications.
My parents had to give me nightly shots of growth hormone for nearly a year. They also gave me weekly shots of EPO for a year and a half for my anemia. This was the worst!!!
Once I was long enough and weighed enough to be eligible for transplant, I had to attend a two day education class, have 30mls of blood drawn (that’s a lot for a little guy), chest x-ray, EKG, and what felt like a million other tests. The doctors have a giant meeting the first Wednesday of every month and discuss upcoming transplants. I had qualified for a kidney transplant March 4th, 2020.
Then, the world shut down…