Thanks Rosemary. I understand that patience is needed…scheduling and tests can only happen so quickly even at Mayo (where my care is being handled).

I am disappointed that from what I can tell on my own, there’s a pretty finite set of potential diagnoses (3) for my labs & biopsy and despite asking my Mayo provider for help understanding the diagnosis *possibilities*, the answer was only that a MRCP was needed. I didn’t appreciate that this has left me in the position of relying on Google to learn what the MRCP is used to diagnose, what a negative might mean, what other diagnoses seem to still be on the table given how my labs are reading. Any data regarding what they’re looking for and what the *options* are at this point for diagnosis has been Internet-generated because they’ve left me in the dark. And my main point is that I agree with OP that it is scary.

Maybe they can’t talk about scenarios due to liability concerns. But I would have rather heard “We aren’t ever allowed/able to discuss diagnosis *scenarios*. We need a definitive diagnosis first,” rather than the platitudes to stay positive. There are answers to my questions, but they are not being shared. At a minimum, wouldn’t you think they could have provided lifestyle advice (diet & such)? Again…it’s all been from Dr. Google.

My next appointment will be with radiology for the MRCP and I don’t think it is reasonable to expect the radiologist to know these answers. And during my last conversation with the Nurse Practitioner (my only contact in the Transplant department), I did ask him. I understand the value of preparing questions in advance as you suggest…they’re just not being answered when asked.

I am entirely asymptomatic. The issue was found during routine annual labs and the advanced testing proceeded from there.

I appreciate this forum as well as your welcome and advice. Sorry I am not in a great state of mind right now.