@khh I have no idea if you will be able to talk to people at other programs beyond getting some general info, but if you are as unhappy with the care you are receiving now as you sound to be, you need to go elsewhere. If you are in Mississippi then Illinois and Grand Rapids are already not that close to where you are, and although the support of family is ideal, getting the medical care you should be getting is the most important thing. You mention that Mayo in FL is not too far. That would certainly be the ideal first step. If you want to look elsewhere you might want to look at statistics on the SRTR.org database. It lists all of the transplant centers and some statistics about them. The Mayo in FL is one of the best transplant centers in the country per the data there.

I was listed at Mass General in Boston but they told me quite frankly that I might get a transplant sooner in a different region. I called Mayo in MN and the person I spoke to was very informative on the phone and did feel they would be able to get me a transplant at around MELD 28, whereas Mass General was saying in the 30s. I came very close to listing at Mayo but then by some great fortune, I had my transplant at Mass General at MELD 28! Mass General, according to the SRTR database is slower at getting livers, which is exactly what I was told, but the survival post-transplant is one of the best.

It doesn't sound as if you have had the testing done yet to qualify for a transplant so whatever transplant center you choose to go to will want to do that testing. If you have had it done, sometimes they will accept the results from the hospital where it was done. Mayo told me they would accept my test results from Mass General but I have heard of other people using different transplant centers who have had to do the testing again.

I very sincerely hope that you are able to move forward in getting the care you need and deserve.
JK

@khh, Have you been diagnosed with a liver condition by a GI or liver specialist? If not, I think that is where you should begin. Not every liver conditiion develops into a need for a transplant. There might be a treatment option available for you. Your thoughts?

You almost have to hope for a tumor. I had similar issue with my MELD score not going over twelve for years. But the encephalopathy was really bad. I finally got a tumor and after a sixth month waiting period (mandatory) I got my exception points. Three days later, had a transplant.