Feel like I'm out of options

[Roxy]

Hi everyone. Hope you're all doing well. I haven't posted in a long time mostly just because I'm working 2 jobs and trying to keep my head above water most days. Anyway...I'm starting to feel like I'm out of options. I've posted over the past few years about my issues with transplant medications. I started on cyclosporine and cellcept and had bad toxicity which caused high creatinine and had high BP, high cholesterol. Then I was switched to Prograf and Cellcept and had vomiting and diarrhea so then I was switched to Rapamune and cellcept for the past year or so and now have high proteinuria and cholesterol and BP. Because of the proteinuria they are taking me off and putting me back on cyclosporine. My transplant doctor (in seattle) is trying to find a clinic for me (in california) that does some newer anti-rejection drug that is infused once a month. Until then I'm on cyclosporine which I'm scared is going to be the same as it was from the begininng where it never stabilized and one week my creatinine would be stable and then next it would be at 4 or something and the medication was never right no matter what we did. Just not sure what to do or what to think. Sorry to just come on here and rant but I really don't know where else to go and just feel like this is my transplant coming to it's end.

[okarol]

 
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!   

[Roxy]

Okarol, thanks for your reply. The whole first year and something that I was on cyclosporine was constant problems and then it was prograf for a month since that was an immediate reaction. The past year of rapamune has been less severe reactions but more side effect type reactions plus the constant change of dosage. But, as far as i can remember i have never been on the same dosage of any medication for more than a month. With the rapamune it was minor changes but it was still so often that i have been having labs minimum every month but that was to let the change in dosage take effect before taking another level. I don't mind all the blood work but it's the rise in creatinine that always stays in the back of my mind. The side effect stuff doesn't get to me much. My creatinine is at about 2.0 . It never went much lower than 1.8 like they had hoped it would except for once I believe. It's been going between 1.8 and 2.4 with rapamune which is better than what i dealt with with cyclosporine. I didn't have any anti-body issues and we have never done a biopsy. Thanks for the info about Stanford and Cedars. I'll be sure to have them look into that.
 Also, my mom continues to do well, thanks for asking.

[okarol]

I don't know if you ever heard her story, but Lori Hartwell, who started the Renal Support Network, got her 3rd kidney transplant from a deceased donor. The doctors cautioned her that since the creatinine did not drop below 2.0, she should not expect it last very long. That kidney has just recently failed and she is back on dialysis. It lasted 19 years!

[Sunny]

Sorry you are having so much trouble with the medications. I didn't know it could be that difficult in some cases.
I hope you can find a solution that works.

[Roxy]

Thanks for your responses. I get labs drawn tomorrow so we'll see how the Cyclosporine is this time around.