7 posts tagged “National Kidney Foundation”

U.S. Transplants Games – Here We Come!

Posted July 27th, 2010 by

A few weeks back, we were delighted to join the National Kidney Foundation of New England at their Transplant Games Team Meeting to give a demonstration of the PatientsLikeMe Transplants Community. Later this week, we’ll be joining Team Mid-New England as their official t-shirt sponsor as they “take the field” for the U.S. Transplants Games in Madison, Wisconsin.
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As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant.  Many of our patients print out their profile charts and share them with their doctors.  Beyond the individual learning, the power of the patient profile is that it is shared with the entire community.  The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same.

At the end of the session, we had a lot of great questions.  Here are a few:

  • Can you chart how exercise is helping you minimize symptoms after your transplant? Yes – check out the “exercise treatments” that patients are currently adding to their profile.
  • Will PatientsLikeMe partner with smaller nonprofits (like the Kidney Transplant/Dialysis Association (KTDA) and Quarter Century Club? We’re always open to speaking with nonprofits to see how we can work together. Send an email to partners@patientslikeme.com if you think a nonprofit you are involved in would like to partner with PatientsLikeMe.
  • Can you only contact other patients publicly through the forum? No. The forum is a great gathering place for many of our patients, but you can also develop relationships one-on-one by sending private messages or leaving comments on other profiles.
  • Do you have leaflets I can distribute at my dialysis center? Absolutely. If you’re interested in spreading the word in your support groups, you can download some materials on our Tell The World page. If you’d like to receive some more official leaflets to distribute at your Dialysis Center, send us an email with your request at goodies@patientslikeme.com.

We are excited to attend this year’s U.S. Transplant Games.  This will be our first time at the Games, so we are grateful to have our Team Mid New England pros guiding the way.  If you’re coming to the Games, please stop by our booth at the Expo to say hello and pick up some goodies.  And, if you see our logo on the back of a Team Mid New Englander, be sure to ask them for a limited edition PatientsLikeMe Pin.   See you at the Games!

PatientsLikeMe member mcotter PatientsLikeMe member lscanlon


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.