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.
(PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe?
(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.
(PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years?
(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.
(PatientsLikeMe) What is one thing you think patients waiting for an organ transplant should know?
(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.
(PatientsLikeMe) You’ve attended the U.S. Transplant Games before. What was that experience like and would you recommend other patients attend?
(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!”
(PatientsLikeMe) Great quote! Thanks for sharing with us and the community, BionicMan.
We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England. In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community. During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients, became incredibly engaged and were excited to share their experiences. Thanks to all those patients who stepped up from the start, as well as those who have since joined our site! With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys. A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word.
Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.” PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events. Similarly, we will be joining forces (as an official t-shirt sponsor) with the “Team Mid New England” at the 2010 U.S. Transplant Games to help raise awareness of organ transplantation. Stay tuned for more details to come.
To kick off the partnership, Molly Cotter (who manages nonprofit development at PatientsLikeMe) sat down with Andrea Savisky, President of the National Kidney Foundation serving New England, to ask a few more questions about their organization, their upcoming events and our partnership.
(Andrea) The National Kidney Foundation, Inc. (NKF) is a voluntary health agency dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation. 2010 marks the Foundation’s 60th anniversary, and it’s 20th year as organizer of the U.S. Transplant Games.
(Molly) PatientsLikeMe is proud to be official t‑shirt sponsor for “Team Mid New England” at the 2010 U.S. Transplant Games in Madison, Wisconsin. How and why do patients get involved? Can any organ transplant patients get involved?
(Andrea) The National Kidney Foundation U.S. Transplant Games® is a national, Olympic-style competition presented every two years. More than just a sporting event, the Games unite thousands of people from across the country, who have been touched by organ donation and transplantation, and offer social and support programs for recipients, donor families and living donors. As the single largest event promoting organ, eye and tissue donation, the Games serve to foster the health and fitness of its participants, while showcasing the success of transplantation, highlighting the vital need for more organ and tissue donors, and honoring donors and donor families. To receive information on Team Mid New England, email me.Competitive events are open to ALL recipients of life-supporting transplants, as well as to living donors, who are eligible to compete in selected events in their own division.
(Molly) Your 2010 Boston Kidney walk is this upcoming weekend (May 16, 2010). What is that event all about and how has National Kidney Foundation used those funds raised to help patients?
(Andrea) The National Kidney Foundation’s Kidney Walk is a non-competitive walk focusing on education and prevention of kidney and urinary tract diseases, and awareness of the need for organ donation. The Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical and business communities, and the general public to celebrate life and create lasting community advocacy and long-term support for the Foundation’s mission.While raising funds for the National Kidney Foundation’s programs and services, the Kidney Walk provides an opportunity for family, friends and colleagues to participate in an inspiring, community-based event. To register for the Boston Walk, create a team or to make an online donation and support the mission of the NKF visit our website.
(Note: If you’re a member of PatientsLikeMe participating in this year’s event, check out how to be sponsored through the PatientsLikeMeInMotionTM program)
(Molly) Some of your U.S. Transplant Games team members were the first to join our Transplants Community (launched in March 2010). Why were you so willing to work with us to spread the word about this new community?
(Andrea) Transplantation can allow people to live healthy and happy lives. While it is true that some important problems are behind clients once they are transplanted, many new challenges will arise. To stay healthy, one has to adapt and pay attention to the various changes to their health, while planning for and responding to them accordingly.Although the NKF’s “People Like Us” movement brings together transplant recipients, living donors, potential donors, people with chronic kidney disease, donor families and caregivers to be empowered, educated and encouraged to be their own best advocate, we felt that PatientsLikeMe aligned with our vision and empowered patients to take an active role in their health and helping others who are traveling along the same path.
Thanks Andrea. We’re looking forward to working with the National Kidney Foundation serving New England to help patients share their experiences with their transplant journeys and have a voice in advancing research.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.