Feb. 20, 2012
Well, I've been asked to start a blog about my experiences with PKD and needing a kidney transplant. I was diagnosed with PKD at 22 years old after a high fever and excruciating pain in my abdomen ended me up in the hospital. It was determined by the end of the week, that one of my cysts became infected. Over the years, I've regularly seen a nephrologist twice a year and managed my blood pressure with meds. I've had the occasional urinary tract infection (guesstimate of approx. 15-20 over the years), but no other symptoms or problems with the disease.
Now I am 49 years old and my kidney function has declined to 20%. I have a huge aversion to going on dialysis - I watched my dad struggle with dialysis in 2008-2009. It was the most miserable part of his life and he seriously was close to stopping. My mom made him promise to stay on dialysis until their 50th wedding anniversary - and then he received a cadaver kidney transplant 2 months later in Feb 2009. His recovery from a kidney transplant was difficult - he was almost 72 years old when transplanted. Now, 3 years later, he is the picture of health - golfing and walking everyday. Unfortunately, he developed a CMV (cytomegalovirus It is a type of herpes virus) infection in one of his eyes and has lost vision in that eye. He is a voracious reader so that was a tough loss for him.
My brother, David, also has PKD and is currently on peritoneal dialysis.
Together with my family, we started a facebook page called "Sharing a Life" to help us search for a living kidney donor. The Facebook page was opened up in May 2011 and we have had several people call Duke Transplant Services, but as of today, there have been no people testing for a match. I am currently on the cadaver transplant list at Duke where the expected wait time is 5-7+ years for an O kidney. In July, is my 3 year anniversary on the transplant list. I am also working with Carolina Medical Center(CMC) in Charlotte to get on their transplant list (diff't region). The wait time at CMC is around 3 - 3 1/2 years and I can transfer my transplant list time there once I get on their list. I still need an MRA (to check on my tiny aneurysm), CAT scan to make sure there in enough room for another kidney and meet with the surgeon.
More updates in a few days,