@caretakermom @amkaplin @geomusser
First off let me say how sorry I am about the real physical and then emotional struggle dealing with your immunosuppression regimens. Hasan Khumash, Mayo Phoenix, is doing or has completed a research study with Belatacept. https://www.mayo.edu/research/clinical-trials/cls-20318351 (Sorry, I just can't find a date for this study so I don't know how old it is.)
And so I don't know any more about the outcomes of the study or if it is even finished. This is just to say that Mayo/Phoenix doesn't appear to be ignoring the topic. From what I can read, if you are EBV negative then Belatacept is just not an option at all. I'm still trying to sift through the CMV Donor positive/Recipient negative situation. I don't know if Belatacept could still be tried under those CMV conditions. For myself, I am going to at least try to open the conversation. Of course I absolutely want to be open to the expertise of my Mayo docs. I also don't want this quality of life for all of my remaining years. Best wishes to all.