Hi, Imp, and welcome to the forum. I, too, live in Jacksonville and go to Mayo. They literally saved my life from liver cancer, but I've never been a transplant candidate. I'm really sorry that they turned you down, based on that one doctor's assessment. It's understandable, though, that they don't want to "waste" a liver on someone who might drink again. I'm a sober alcoholic, sober 24 years now, so I hadn't had a drink or unprescribed drug in many, many years when my liver problems started in '05. I hope you can get in at Shands Gainesville. It could be that you have too many other medical problems to be considered a good transplant candidate. Above all, DON'T DRINK! Have you been to AA?
If you have your latest lab results, you can go to this site and calculate your MELD score:
I hope you or your husband will keep us updated on your progress.
Post Edited (hep93) : 8/13/2010 3:55:58 PM (GMT-6)
Hey Imp.... just advocate for yourself...quietly firmly point to your long term stability... and just push the point.. and yes I thank God for the day I found this forum... I don't think I could have gone through this alone... remember usually someone is here 24/7 or will be within a few hours... but prayers ur way... sounds like things are moving a little... take care... Sandi
Imp, MELD scores do fluctuate up and down. I had some very bad experiences with Shands Jax and now do not trust them to do anything invasive. My PCP is there and I get my mammogram and Pap there, but that's about it. Mayo does all my blood work, MRIs, etc. I've found them to be really wonderful. I've had 2 hip revisions there, too. I have heard good things about Shands Gainesville regarding transplants.
Do keep us updated!
Imp, thanks so much for the update! I'm glad to hear you were able to get a new liver doctor. I'm really sorry about your pulmonary/heart problems. I hope they don't prevent you from getting a transplant, but hopefully they can be controlled and you will be eligible for one. BTW, as long as you're going to AA meetings--you need to document your attendance. Make up a form of some kind with your name, dates/times of meetings you attend (to be filled in), perhaps the type of meeting (CD, OD, 12-Step, etc.) and have the chairperson sign it. This way you will be covered if and when you do get evaluated for transplant.
Please keep us posted on your progress!
SD, If you are not getting enough oxygen in your blood (and thus not enough in your brain), you need the O2. I believe that's a separate issue from liver disease, at least until the very end. You do have pulmonary problems, so that's probably why the need for O2.