Frequently Asked Questions
Q: What caused your kidney disease?
A: The short answer is that I was born blind thanks to a super rare gene mutation that caused the super rare Leber Congenital Amaurosis. Ends up, there are a few of the gene mutations that cause LCA that have also been found to cause renal failure. In other words: I won the genetic lottery.
Q: How did you not know you were in renal failure?
A: It’s honestly something that was never on my radar. I knew I was tired a lot. And then the puking started in earnest in November of 2013. Just a couple of days before we went to the ER on June 9, 2014, I told Aubrey I felt like I was dying. In that time between November and June, though, I’d seen numerous doctors in an effort to figure out what was wrong with me, and the consistent diagnosis was GERD.
Q: What’s dialysis like?
A: It sucks. I get stuck with two big needles three times a week, and have to sit still in a slightly uncomfortable chair for four hours each treatment. I have to watch my fluid intake, and I have to watch what I eat. I have to eat within 30 minutes afterwards, otherwise I’ll feel sick to my stomach. And once I eat, I crash for anywhere from two to five hours. Since I finish at around 11 in the morning, that means I sleep from noon to anywhere to 2 to 5 p.m. That night I’ll usually end up sleeping for 12 hours or so. In other words: I’m tired all the time.
Q: What would getting another transplant mean to you?