Patrick
I live in the Bay Area and have ADPKD. I received a kidney through a three-way paired donor exchange through a collaboration between Johns Hopkins Hospital and California Pacific Medical Center.
I have Polycystic Kidney Disease and as some of you folks may know, for a long time I saw my kidney function declining with little hope of finding a donor. Living in the Bay Area meant I was looking at a 6 to 7 year wait on dialysis for a cadaveric donor. I put all my effort into staving off dialysis by embracing the lessons of Dr. Mackenzie Walser, described in his book, Coping With Kidney Disease: a 12-Step Treatment Program to Help You Avoid Dialysis. His very low protein diet with amino acid supplements is a bit extreme but I believe it kept me off dialysis safely for a year and a half until my transplant - all the while my blood tests indicted good albumin nutrition.
Then through our Diane I heard about paired kidney donor exchange. As you will read in the accompanying article, my wife had wished she could donate a kidney to help, but with incompatible blood types this seemed impossible. Now this has become a real possibility. I followed Diane's lead and on April 27th 2007, through a three-way paired exchange, I received a kidney. My wife is doing very well and my new kidney is working great.
I had a few complications related to my transplant. First my new kidney came with the CMV virus that was treated with a six-month course of Valcyte. I have since learned this can also be treated pre-transplant.
Then one evening, a month following my transplant, I found it difficult to breathe and my pulse was persistently high. I ended up in the emergency room with a diagnosis of a bilateral pulmonary embolism. After I have since been on Coumadin, a blood thinner, that I monitor with an INR meter, a home monitoring machine. I enjoy world travel and following a long flight from China, I developed a second episode of pulmonary emboli.
My enormous native PKD kidneys were so huge they were causing problems. This continued to be a problem post-transplant with persistent cyst ruptures. A year after my new kidney had settled in, I had my natives removed, shedding twenty-five pounds in the space of a few hours. I felt more comfortable than I had in a decade. There were activities that I had not done in years. I could now ride my bicycle again; we could take long hikes together; I was bursting with energy. I am continuing to do very well overall.
We are coming upon the fifth anniversary of my transplant. I’m in full health with all my blood tests back to normal. I became a grandpa recently, something I could not have really counted on some few distant years back.
