News & Events
Download the "Medication Side Effects in Transplantation" presentation.
UNOS appoints transplant recipient M. Jill McMaster as OPTN/UNOS Vice President for Patient and Donor Affairs. To read more click here.
Free Telephone Conference about Living Well on Immunosuppressive medications
Living Donor Financial Assistance Program
Consensus Conferences
The National Kidney Foundation continues to organize and participate in consensus conferences on issues related to CKD, living donation and transplantation, with the goal of these conferences being to address emerging issues and to develop guidelines and standards of practice for the care of donors and recipients.
Receiving an early kidney transplant as the first therapy to treat kidney failure– before having to start dialysis- is considered to have health benefits. The NKF held a meeting about this subject and a report of the meeting was published in the Clinical Journal of the American Society of Nephrology. A PDF of the report can be found here ( PDF )
Spotlight on Transplant Games
By Rebecca Hays
Mary and Nancy are two transplant recipients who have participated in the Transplant Games.
Mary received her first kidney transplant as a young adult in the early 1990s. She first went to the Transplant Games in Indianapolis in 1990 and has attended five or six times since then, notably going to Hungary in the mid-90s for the World Games. She has competed in a variety of events, including cycling and running.
Nancy received a kidney-pancreas transplant in 1998. She first competed in bicycling at the Transplant Games in 2000 in Orlando, FL, and competed again in Louisville KY. She attended as a spectator in 2004.
What worried you about first attending the Games? What made you nervous?
Mary: I knew no one; I was nervous about that. Plus, since I was diagnosed with kidney disease as a child, I never identified myself as an athlete. I was worried my bike would break and I wouldn’t know how to fix it, I was worried about stuff like that. There was another athlete [from my state] who helped me train, helped me get there. That meant so much.
Nancy: Going to the Games was my first out-of-state travel after my transplant. I still had little aches and pains. I had a little bit of anxiety about that, about staying hydrated, and about my medications. Of course, once I got there, I realized there’s no way you’d get in trouble with all the people around, the nurses, our state’s coach.
What surprised you when you got to the Games?
Mary: I was surprised to find competition in myself! I also was used to being the “other” in my friendship group—the only one with a transplant. It was amazing to be in this huge group of people who all had that experience—to be part of the crowd—even back in 1990 when the Games were small compared to what they are like now.
Nancy: There was a funny coincidence that way. I didn’t know other people in my area who had had a transplant. Then I happened to be on the same flight to the Transplant Games with someone from my hometown!
Why do you go back?
Mary: The positive outlook of the people who go to the Transplant Games. I think the people who go to the Games are those who value the quality of life after transplant; the “upswing” perspective, not the depressing outlook. After awhile, I made friends and saw the same people year after year, too—there was one woman and we competed against each other in the same events. She always seemed to just beat me and it used to drive me crazy. But there’s that connection.
Nancy: I’ve never had so much fun in my entire life. I slept 4-5 hours a night; I didn’t want to miss anything! It’s like an infusion of hope. There is camaraderie of being there with a group of people who have been through the same experience, and meeting all these people who had their own stories. I’ve maintained one particular friendship with a woman who had a similar experience. Her kids were our organizers at the Games, getting us where we needed to go.
What memories stick out in your mind?
Mary: The World Games in Budapest, Hungary, were life changing for me. I got off the plane, and this random Australian man stepped up and helped me with my bike. When I went to the Games in Minnesota, I was standing outside my hotel, and these random people came up to me and asked me if I had a transplant. I must have been wearing an ID badge or something. It turns out they were an organ donor family, and we just stood outside the hotel and hugged and it was so powerful.
Nancy: The starting line in Orlando when I thought to myself, “I’m going for broke, there are ambulances all over if there’s a problem.” I was crying, and couldn’t believe I was doing this! Meantime, the track was a blacktop parking lot, 96 degrees. I challenged myself to do things I never thought I’d do.
I was compelled to go up to every donor family and hug them and thank them. They weren’t my donor family but they sort of WERE. Donor families were as excited as we were. It’s a venue for them to acknowledge the people they loved. Here we are on either side of the continuum but here to celebrate together.
What recommendations would you make to someone attending the Games for the first time?
Mary: Definitely go to the opening ceremony and the closing ceremony. So powerful.
Nancy: The opening ceremony. Also, remember to think about meds and especially water. I was poked fun of for having so much bottled water, snacks, beef jerky. But they were great ice breakers too!
Did you have friends and family come to the Games? What was that like?
Mary: It was meaningful when my mom came. She has been through all of this with me and it was great for her to see me be able to compete.
Nancy: Honestly, it’s a pure feeling if you go alone.
What keeps you from going back? How do the finances of the Games work for you?
Mary: I wish I could go to the Games every time, but I just can’t afford the money, or the time. I wish more fundraising could happen to offset athlete expenses, instead of fancy uniforms or what have you. I would say that the Games cost me $700-$1500, depending on whether I can drive to them or if I have to fly. I know the first time I went to the Games, the only way I got there was because [another athlete] gave me a ride. I keep hoping [the Games] will be in my hometown!
Nancy: The finances are very, very hard. It costs about $1500 to go. The logistics are very different from city to city too—Louisville was great fun, so organized.
