Hi Roxy,
Yes, it has been a long time! I remember when you got your transplant - a few months after Jenna. So are you saying in over 3 years you have not had any periods of time without problems related to medications? Jeez if that's true I am so sorry to hear it! You mention your creatinine has been unstable too. What is it now? I know too much immunosuppression can cause problems but I am only now learning that some people cannot tolerate them long term. I think this is similar to what Chris is experiencing (he is 7 years post-op with a kidney and pancreas transplant.) He has had digestion issues and it seems his body can no longer handle the doses required to maintain the level of anti-rejection needed. (Chris, if you read this, please correct me if I am getting it wrong.)
I hope you get some answers. Stanford and Cedars Sinai in Calif. are both doing new things with rejection rescue and also infusions to help maintain kidneys that are not a good match. Did you have any antibody issues with your mom's kidney? Have they biopsied you?
How is your mom doing? I hope she's been doing well since she donated.
It's good to hear from you. I don't have any answers but I am sending good wishes and HUGS your way!