3 posts tagged “NKF”

Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

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Meet Our Transplant Community’s BionicMan

Posted June 7th, 2010 by

Since the launch of the PatientsLikeMe Transplants Community in March, more than 1400 patients have come together to share and learn from their transplant journeys. Thanks to our partnership with the National Kidney Foundation serving New England, BionicMan was one of the first transplant recipients to sign up and played a critical role in helping us shape the community before it was launched.  Recently, we interviewed BionicMan to learn more about his transplant journey, his experience with PatientsLikeMe, and his participation in the U.S. Transplant Games.

blog-logo2 (PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe?

screen-shot-2010-06-07-at-114419-am (BionicMan) I found out about PatientsLikeMe from National Kidney Foundation serving New England.  I think it has benefited me because I like to talk to people and give them the benefit of my experiences.
blog-logo2 (PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years?


screen-shot-2010-06-07-at-114419-am (BionicMan) As both a heart transplant (1992) and kidney transplant (2007), my life has changed in so many ways.  I try to live life to the fullest each day, and appreciate every moment I have with my family. Over the years I have had a few setbacks, like CML and colon cancer and the amputation of my left leg just below the knee, but I have been able to overcome all these things and inspire many people.  I wouldn’t change anything, and I will never ever give up.
blog-logo2 (PatientsLikeMe) What is one thing you think patients waiting for an organ transplant should know?


screen-shot-2010-06-07-at-114419-am (BionicMan) People heading into a transplant should know they are making a lifelong commitment to their health, and they must take care of the Gift of Life they are about to receive.  Just like everyone else, not everyday will be great, but it sure beats the alternative.
blog-logo2 (PatientsLikeMe) You’ve attended the U.S. Transplant Games before.  What was that experience like and would you recommend other patients attend?
screen-shot-2010-06-07-at-114419-am (BionicMan)I would definitely recommend going to the U.S. Transplant Games for every transplant recipient.  It is like being in a city of transplant recipients. Whether you are real athletic or not, you will enjoy the experience, meet people you will be inspired by and remember your whole life. No matter what is going on in your life, you will see people with more problems than you, yet they have overcome.  You will definitely cry at your first Opening Ceremonies, but your life will be changed forever.  You will also get to see the real heroes in Organ Donation – Donors and their families.

One of my proudest moments was during the 5K road race at the Games. I was doing the race in a regular transport wheelchair after losing my leg and before getting my prosthetic, and while rolling past a photographer, he said to me  – “From Stump to Hero!”

blog-logo2 (PatientsLikeMe) Great quote!  Thanks for sharing with us and the community, BionicMan.