July 6, 2014 Update:
After two years of waiting, Neil underwent a kidney transplant on July 5th at Mt Sinai hospital in New York.
My kidney function has been at stage 5–also known as end-stage kidney failure–for a while. I began dialysis in May 2013 and searched for an altruistic kidney donor for over two years. Early in my search, family members and several friends were eliminated as potential donors, either by my transplant team or their circumstances.
With just over 100,000 folks waiting for kidney transplants in the US alone…and the wait list for a non-living donor being 4–7 years…my situation was fairly desperate until I received a transplant on July 5th.
Two-and-a-half years ago my wife Laura thought we should start this site to provide information for those affected by polycystic kidney disease, especially family members. 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 can still be quite elusive. So during the past two years we have compiled links to good PKD resources and a blog with stories that I hope will lift your spirits.
Laura is especially fond of the Cold Spring Harbor link; when Sam, my online advocate, showed it to us, PKD all clicked together for her. The blog and our 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.
Please explore this site. I hope it’s helpful for those like me with kidney disease who are searching for answers or for potential donors, and for loved ones who are part of a support network.
Here’s Neil’s blog..
Check out Neil’s links..
Find out more about Neil.
This website is for informational purposes only and is not a substitute for professional medical advice, diagnosis, and treatment. Please consult with a qualified doctor before making any healthcare decisions. My hyperlinks to other websites do not constitute my endorsement of the completeness or quality of content on those websites.