My kidney function has crossed the border of stage 4 to stage 5, aka end-stage kidney failure, and I
will shortly begin recently began dialysis. Last year my GFr (common measure of kidney function) fell from 50 to about 12, whereas it took 14 years for me to drift from 70 to 50. My situation is now urgent with the wait list for a non-living donor 4–7 years.
My wife Laura thought last year that we should start this website to provide information for those affected by polycystic kidney disease, especially family members. And in the process, the site would call attention to my need for a transplant. When I was first diagnosed with PKD in late 1997, just 3 weeks before traveling to China to adopt our older daughter, Laura searched the internet and didn’t come away with much understanding; advances in search engines and creation of The National Registry have changed that, but putting it all together was quite elusive. This site’s online links walk you through medical issues stemming from kidney failure, PKD and transplants, testing and insurance coverage, recuperation, types of transplants, research to lessen rejection rates, etc. My nephrologist has been phenomenal at stalling the advance of this disease, inherited from my father, but he has kept his distance from the emotional and day-to-day living consequences of my PKD–I was a triathlete for most of life, now I’m happy to be able to take a 30-minute walk on the beach.
If you would consider donating a kidney in my name or know someone who would, here’s how.
I’ve made a few changes to my website including its name, as I was getting feedback last year that my urgent need for a living kidney donor was unclear–I hope it is now. During the last six months we have compiled many links to good PKD resources, and an active blog with some wonderful stories that I hope will lift your spirits. Laura’s especially fond of the Cold Spring Harbor link; when Sam (my online guru) showed it to us, it all clicked together for her.
I hope this site will be helpful for you and for your loved ones who are part of your support network.