Several years ago I met a special lady named Risa. Risa was in Chicago from Florida – she had received a double lung transplant in at Loyola in 1996 and was experiencing rejection – she was here for a few different treatments in an effort to stop or reverse her rejection. One of our very special nurse coordinators knew Risa could use a friend and some motivation and called me to see if I was willing to chat with Risa… That nurse knows I’m always willing to chat with someone who needs a boost!
I know she was going through some scary stuff - stuff that I fear myself... Yet, Risa seemed so positive about life and all she was dealing with.
While she was in Chicago, we had phone conversations and exchanged letters and emails, but we never actually met – though I had intended to meet, both of our schedules were a little crazy… I’ll meet her someday.
Risa is an amazing person – after her first transplant she spent a lot of time helping others and speaking publicly about transplant and organ donation… She told me that some friends told her how helpful she was and how good she was at helping, and they felt she should organize something. Risa saw a need for an interactive resource for transplant patients and started TransplantBuddies in 1999. While we she was in Chicago, she invited me to join – I joined few months later. My username on TransplantBuddies is BreathinSteven.
TransplantBuddies is a web-based “support group”. Registration is free and pretty much anyone is invited, but it is intended to support transplant recipients, people waiting for transplant, living donors and donor families, as well as friends and family of any of these folks. There are several organ specific forums, as well as forums for prayer/inspiration, nutrition/fitness, laughter/small-talk, donor families, and a Spanish speaking forum.
It’s a pretty large community, with hundreds of members – mostly from the U.S., but some from all over the world! And most important: there always seems to be someone willing to answer a question, give some guidance, or lend a sympathetic and compassionate ear (or typing fingers). When a new member posts a question, or a member returns after a long hiatus, Risa is usually the first one to welcome them, or welcome them back.
TransplantBuddies maintains libraries of transplant information, drug information, UNOS news, and a variety of topics. They maintain hundreds of links regarding all organs, financial and drug assistance, various transplant centers, youth links and general transplant information links. There are also bios and photos and “life stories” of many of their members.
There are a number of very knowledgeable contributors. Transplant patients who are very educated about certain organs, knowledgeable about various medical procedures, drugs, the immune system, UNOS and OPO policy, organ procurement and allocation, and many other topics. Like so many groups, live or web-based, the information is always couched in the fact that it is not given by physicians or medical professionals – that we are patients, friends and family and nothing should supersede, or take the place of advice given by a physician.
A number of donor family members occasionally post – I think so many of the recipients love seeing them there – so many never experience contact with their own donor families and seeing them, and having contact with them reminds us a little more of the gifts we’ve been given, or gifts we’re waiting for – it reminds us that there are very special people and families behind those gifts.
Risa’s rejection eventually took its toll, but she received two more beautiful lungs in 2005 and after a pretty rough recovery, she’s doing very well. Her husband took over posting some information for and about her while she was down for the count – and like so many people we follow through this adventure, we followed and worried about and supported Risa.
She’s back as good as she ever was. www.TransplantBuddies.org
