NIH transplantee looking for others
 

I had my transplant in October and I'm out but staying in the area till further notice. I'm on tacrolimus and prednisone (tapering). I was just looking for anyone else who may have also gone to nih for a transplant, or who was on tacrolimus? I am just looking for other peoples stories/opinions/experiences.

Hello
 

I responded to one of your other postings the other day.
I am 11 months old, and got off tacrolimus last month. I had issues with it, as my body couldn't handle the full dosage, and then my liver had gvhd and had to balance cellcept with that. Tacrolimus made me shake a lot and the liver was not happy with it either, but didn't have any other side effects.

Where did you have your transplant done?

For this whole year that I have been a "bubble-girl", I too longed for other transplant "friends", I have since found two, and then few weeks ago found this site, and I attend all women's group, but there is only one transplant patient there. The leukemia group has few, and meeting them and talking with them has given me great hope to just move forward and believe that this works and one day I can be in their shoes. I returned to work in August and it sure is nice to be around people :)

Please do ask any questions you might have. Everyones journey is different, but the feelings and concerns are pretty much the same.

I wish you all the best, keep your mind pre-occupied with positive things and soon you will notice how your life has changed, for the better.

Tii - 37yrs, MDS