Liver Cysts with PKD

The issue is I got my transplant as a paired donor in 2012. Mayo did not do paired donors then so I had my transplant at Emory in Atlanta. Team at Emory do not seem to have any answers.

I also have a nephrologist at home in NW Florida. So far no help with these avenues.

My experience has been that a nephrologist might not be familiar with all things related to specialized care. That is why I asked this question. It sounds like you have had conversation with the transplant dept a Emory. I can't understand why they would not investigate this issue, afterall, you transplanted there.

I don't know medically what is going on, but I would like to encourage you to seek an appointment at Emory (if they have a liver dept). Your health is much too important and your transplanted kidney needs to be closely monitored to be sure it is not going to be compromised. Mayo Clinic in Jacksonville - Is it convenient for you? You can always make an appointment there, or have your doctor refer/make one for you.
I really do care about you.

I think I will ask for a referral to Mayo. I have not really gotten any support on this at Emory.

Here is contact information for you and/or your doctor
https://www.mayoclinic.org/appointments

Great. Thank you so much.

@elevinton, I am thinking about you. Have you contacted Mayo about getting an appointment?

Thank you so much for thinking of me. I called Rochester to get into the study. I still have not heard back. It will be a week tomorrow. I plan on trying to call again in the morning.

@elevinton, Did you hear from anyone or did you reach anyone yet?

I'very called twice and was told I would get a call. Still haven't heard back.