Hello everyone. This isn't at all political, but I could use some help - badly, and I hope that a few people on this site might be able to share some of their knowledge and expertise on a very arcane subject, but one with enormous consequences.
One of the best people I know in this world, a woman of 37, is a kidney transplant recipient. She's done very, very well healthwise until recently, when she was diagnosed with PTLD - post-transplant lymphoproliferative disorder. Basically, it's a form of lymphoma associated with the Epstein-Barr virus which exclusively affects transplant patients.
It is a difficult illness, made more complicated by the fact that one of its main triggers is the very anti-rejection medication transplant patients depend upon to avoid organ rejection. It's also quite rare; from what I can tell, only 1-2 percent of transplant recipients are affected.
Basically, information on this disease that I've been able to find has been quite sketchy and also self-contradictory; there seems to be little consensus on treatment, and I have yet to run across any good clues as to which facilities/cancer centers specialize in PTLD or have track records of particularly good outcomes. I've spent a lot of hours on research over the past week, finding the best information I could, but I hope that someone on here might be able to point me in the direction of any particularly good information resources, tell me about their own experiences with the disease and treatment choices, tell me about online or offline communities/groups for affected people, or anything else which might be helpful.
I'm trying to help my friend and her family take a proactive approach to her treatment, especially with regard to the selection of the facility, and would appreciate any input anyone here may have.
Thank you.
EDITED TO ADD: My many thanks to all of you who've offered ideas, suggestions, and good wishes...you don't know how appreciated it is. As I type this, I am sitting on my bed, alone in my house, & yeah, feeling pretty lousy about everything. Your comments and positive thoughts have helped a lot, and are going to carry me through the rest of today. You've made a difference - thank you. More importantly, though, you've given my friend & her family some good starting points in figuring out what to do...that's invaluable. THANK YOU.