"I don't regret it so far. I have been monitoring my own labs for a long time since my center rarely looks at them. If I notice something out of range then I'll call the nurse but they usually blow me off anyway. One positive thing of…"
"Has anyone here ever just said, "No"? I was so sick and miserable on 3 mg of rapamune. I'm down to 1 mg. I am not going to take any more than that. I do take CellCept twice a day. I have an appt in about…"
So happy to hear you had a better experience.
My husband has improved quite a bit neurologically since I originally posted. However, it has not been because of any of the medical "professionals" involved in his care that helped.…"
"Hello, I had my kidney transplant March 2008 at Yale New Haven. was on prograf for about 8 mo. changed to rapamune because the side effects on prograf were hard to handle. have had some infections, meningitis, epstein barr, human herpes virus…"
"I should reply to the original thread point, also. In 12 years I have seen a drastic change in the treatment of post-transplant patients by all kinds of doctors, including the transplant centers. Back when I was first transplanted, there…"
"I am 12 years post liver transplant. I was switched from CsA to Rapamune about a year and a half ago because of cyclosporin induced peripheral neuropathy. On CsA I had regular acne (from being immunosuppressed, I guess) and it…"
" I had my tx at JMH 4yrs ago- treated like royalty now when I go for labs or doctors I am still treated pretty good! of course maybe cuz they are all like family to me! we have been thru good and bad over 4yrs but always…"
" I also have the bumps on my neck and head. They didn't start until I was put on rapamune. The prograf had taken a major toll on my kidneys so they switched to rapamune 2mg daily. They really aren't that big of a deal outside of the…"
"I experience the same thing still. Rapamune has caused a major breakout on my face, neck, shoulders, arms, back, and chest. I called my post transplant team to report the breakout and the a horrible taste in my mouth when I eat anything with vinegar…"
Hi Pat, Sorry your having problems after your Gift Of Life Heart Transplant
Blessings that Doctors will be able to help you with these other problems. My friend Jean whom is 17 Years Post Liver Transplant Had A Total Hip Replacement down 1/2 a year ago now and she is doing well she will be 65 years young next month!!
I am so sorry to hear you are facing many obstabcles with your new life. I hope you find a solution. I know many energy medicine tools if you are interested that help with pain control. Check out http://emofree.com