Liver transplant - Let's support each other

@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 may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

Did you get any of that or did I lose the entire thing I typed?

@joanaiken I was originally on prednisone, cellcept and prograf. After a few months I only took prograf and am now on 1mg every 12 hours. I think they might reduce it in April but the bloodwork will tell. I guess we're all taking meds according to our doctor's advice.

@suzeaz, I also use age as a reason for many things! You make a good point that we should talk to our doctors, especially when taking these medicines, about our bothersome symptoms. Thank you for the reminder.
Sometimes I have been told that it (the symptom) is something I will adjust to, ot that I just need to live with, but at least I know that my transplanted organs are being cared for.
When my prograf is out of range I usually feel anxious and jittery and have a difficult time focusing on a task. I remember a time when I could not pull my car into one of 3 connected parking spaces in a parking lot. Another time I nearly went thru a red light at a busy intersection. Fortunately my husband was there to take over the driving. I called my transplant nurse as soon as the office opened. Labs and reduction of prograf came next.
Let us know what your doctor suggests.

I did not realize that Prograf effected mind clarity. I had my dose increased by .5 per day several months ago. I have felt mental clarity diminished. I attributed it to getting older.

Thank you for your comment. I will talk to my Dr's.

@gaylea1 Oh my goodness, you have been through some nightmares. I hope your upcoming procedure is less painful. I can understand your apprehension. I have been very fortunate in not having any post-transplant problems.

@joanaiken I never got the to coma stage with my HE episodes but I remember clearly one where I was sitting on the sofa and completely uncommunicative. It was like watching things going on outside and beyond me. My husband called our friends over, he is a doctor, and he told my husband to call an ambulance. I was basically catatonic. Such scary stuff.
JK

I did not realize how much the Prograf had affected me, as I have been taking it for 10 years! This has been my recent experience with it. Everyone noticed the positive change and I felt more like my old self again, although I know aging may affect it. Your body may react differently. My dose was decreased dramatically. Currently dose is back up and Cellcept added due to liver and kidney issues. I think we tend to forget what powerful meds we take.