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Power2Save Transplant Community

Creating a Kidney Club to help transplant and dialysis patients learn to be their own best advocates

When I was a transplant patient at Downstate Medical Center in Brooklyn, New York, the PA along with the Social Worker and other medical staff affiliated with the transplant doctors and the dialysis center started the Brooklyn Kidney Club to help bring awareness to patients suffering from kidney disease. It is a really vibrant and amazing support group still going strong, and getting stronger, as patients learn how best to take care of themselves whether they are on dialysis or have had a transplant. I wanted to mention this in HealthUnlocked because through the dedication of the Downstate staff so much learning and awareness has developed to help improve the lives of kidney patients. Do any of you know of other Kidney Clubs in your area? Is there a possibility of bringing this to the attention of medical staff at the hospital you are afflilated with? I am looking into volunteering at a local hospital and hopefully become involved with the kidney/dialysis patients and who knows, maybe in the future they too will have their very own Kidney Club. Love to hear from others. BetterKidney4Me.

1 Reply

At Henry Ford Hospital Transplant Insitute, we have a group of volunteers identified as the Transplant Living Community (TLC). Our group consists of recipients, donor, and caregivers from all different transplants (liver, heart, lung, kidney, multi-visceral, pancreas etc.) We educate and support all recipients and their families throughout the process and after the transplant is completed. We also created a Patient Family Advisory Council (PFAC) to interact and exchanges ideas and experiences with the medical team, pharmacists, dietitians, nurses, surgeons, etc. who are involved in the process to improve the experience for all of those involved. We all commit to using our (ACES), Attitude, Compliance, Exercise, and Support, as a basis for a successful outcome and adjustment to our new normal which will be our guide for our lifestyle prior to and following the transplant. I can provide you more information if you are interested.

Cheryl Cushingberry


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