what to do next

hi,I am in need of a liver transplant.. my doctor told me a year ago.. he sent me to a specialist hospital.. since going there I have had nothing but problems with the doctors and staff at the hospital but I kept going I did everything they told me to do they told me I had to go to therapy because I had a past history of alcohol use which they blew completely out of proportion it has been years since I had a drink... the therapist I saw told me she thought I was a good candidate for a transplant and told the hospital I was not at risk of using alcohol I also quit smoking.. so I finished the therapy... they told me to call them
right before I was done with the therapy so I could get scheduled for testing for transplant because it has been over a year since I was last tested... so I called and they still have not scheduled me... my daughter called the doctor and after calling everyday for a week she finally got through the doctor told her they may not test me nor give me a transplant
because I had a history now I am getting sicker I have hep c and advanced liver disease cirosis I am 56 years old
I have a wife and son 15 two grown daughters 3 grand children and I am beside myself that they are considering not putting me on the transplant list I have basically wasted a year and as I said I am getting sicker.. does anyone know of a state and a hospital that will help me and give me a transplant I only have medicare for insurance if I go to another state I won't be eligable for medicaid right away I'm sure.. if you can give me any ideas please let me know thank you
I'm tired and for the first time since this nightmare started I am scared that I won't get a transplant and there is no reason not to thankyou again

[Thomas D Schiano, MD]

what state do you live in?  Medicare or medicaid should not be an issue. waiting time is no longer an issue with the transplant list so do not be upset as you haven't lost anything by not being listed sooner.  If you are receiving mixed messages from your transplant center consider going to another one for an evaluation..

[Liz50]

So sorry for your probelms....you do not mention what state you live in, so that's not helpful.

You must be determined to be your own doctor, so to speak and be very aggressive in getting the docs to listen to you. My own hubby had a transplant in '06 and we had to be very assertive ingetting him tested and listed. Being a past drinker (and you do not mention isf you were an alcoholic) is not a good sign, becasue they will not TP into someone who is not TOTALLY committed to the long term treatment post TP.

I do not know how medicade works re: tranpslants. We had to pony up a ton of cash for ours, and we had insurance. You need to do a lot of research and you need to get a hepatologist who will be your advocate.
My hubby also had hepc (for which he is now treating) and is also 56. He lloks forward to full and happy life. I know waht you are going thru right now is terrifying, but hang in there. Get a good hep doctor and work with him.

All the best,
Liz

[iplaylead]

Thank you for answering me I live in NC I go to unc the only other hospital is duke I live 4 hours away from both they both have the same criteria I have gone to both I never really saw the same doctor at unc alway's a PA and a different one the last time I saw a doctor he said he was going to be who I will see I saw the main doc in charge once for 2 minuites the first time I went and one other doctor once during the year I went there
I did complain about this so that did not put me in good standing anyway I guess I will have to move to another state I just wish I knew where to go before jumping in a car with my family and leaving but anyway thankyou again for answering me I'm sure you will see me again here there are other things I would like to know but this is the main important right now because I don't have a close relationship with any of the doctors so I can't ask questions thanks again jimmie

[Thomas D Schiano, MD]

i think many patients from NC go to UAB or even vanderbilt.  I know an extremely competent hepatologist named Kerry Whitt who is in private practice who is practicing in NC and would recommend that you see him.  he trained with me; you can name drop to get an appointment.