I had a liver and bone marrow transplant when I was 13 in 2003 I am 7 years out , still on anti-rejection meds. To this day I still live in extreme pain, I have discussed it with my transplant Dr.s and they blow it off every time I had a splenectomy this year because my spleen was over 12lbs due to the blood not flowing through the liver. Also the bone marrow transplant was done because they believed it would make it easier for my body to accept the liver. This was experimental at the time and had to sign tons of things for it, last time I asked they told me the procedure was inconclusive and is no longer performed. How can i get help.
My pain is mainly in my lower back and sometimes in my hip, while I still had my spleen an MRI showed that it had been pushing against my hip which has caused it to be out of whack, I have heard that a lot of transplant patients have problems with pain in their lower back. I see that it is a listed side effect of prograf which I am on. Is this a common effect of the medication. Also the transplants were done in pittsburgh. Other than this though I have done exceptionally well given the circumstances. Thank you for the insight.
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