4 posts tagged “transplants community”

Share and Compare: From the mouths of patients

Posted December 3rd, 2010 by

screen-shot-2010-12-03-at-41141-pmAs we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in.

You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people – here’s what they have to say.

Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site.

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“It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and that’s why I was ‘different’. The more information we can share with each other, the better.”
Epilepsy community member

“I feel like a breath of fresh air of hope; just knowing I’m not alone and there are others who experience side effects, have good and bad days even experience combination seizures.”
Epilepsy community member

“[It] really puts my mind at ease and sounds like my [treatment] dosage is not that unusual this soon after my transplant. I look forward to eventually taking it down.”
Transplant community member

“I am so thankful [to have] found this site…where I can, after a fashion, talk and identify with others on the PD bus. We understand. We are similarly bound.”
Parkinson’s community member

“…just being able to see so many people that are going through the same thing I am (literally sorted by [treatment] and [diagnosis]) – makes it feel just a little bit more in control for me.”
Fibromyalgia community member

PatientsLikeMe member e_morgan


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.