Liver Transplant Evaluation as we speak, Alcoholic ESLD

First post, but I've been reading for a while. What a warm and loving place for people to come together, very inspirational!

My uncle, Calvin went to his evaluation appointment but did not make it through the day, he had to be admitted after the first round of tests showed his creatinine/hemaglobin levels way off. We knew this, but the docs at this facility had not met him before and didn't have his last hospitalization records (52 days!). He received a blood transfusion and dialysis and is finishing the eval as an inpatient. I should mention he does not have hepatitis but just good ol' alcohol related liver failure.

My mom is there with him as he has no nuclear family - he's always been a single man. He's 46. The docs caring for him during the last hospitalization referred him for transplant but he only has 6 months sober this week. Has anyone heard of someone so recently sober being listed for transplant? He has only been to one AA meeting because he is in dialysis 3 x a week and really too sick to drive, he is completely incapacitated and relies on the blood, plasma, and dialysis to keep him alive. I'm sure he'll have the highest MELD score there, but with his inability to show participation in a rehab program, we worry they will pass him over, despite his total commitment to sobriety and positive outlook for his future. He's just sure it's going to happen....me? Not so much, the liver doc said he doesn't have a history of compliance and that's the concern. But no decision has been made.

I'd love to hear your experiences/ thoughts/ insights - I fully understand this is a complete guessing game at this point, but there is NOTHING else wrong with him besides the liver complications. He would be in good health if he had a second chance for a liver. Alternatively, he may not make it even if he is listed because he never got a diagnosis before - he was uninsured up until a month ago and I feel like nobody wanted to mess with him, I think they saw him as hopeless. But now he's funded so things are moving for him now, thank God.

Kist, welcome to the forum! Your instincts are right. People who develop liver disease or failure due to alcoholism are required to have 6 mos. of documented sobriety. I very much doubt that they will list him without this. I do know of some people who make a transplant list with less than 6 mos., but they have been very compliant in going to AA and having their attendance documented and having continuous sobriety for 4 or 5 mos. While being evaluated, they continue to go to AA or some other form of treatment/documentation. One guy who is now listed still has to go for a breatholyzer test every day.

Another concern would be his kidneys. He may need a kidney transplant, too.

However, though he may not even qualify for a liver transplant, let him try. It will give him motivation and maybe he will stop drinking.

Hugs,
Connie

Kist, never heard of such a place. HOWEVER: If he is discharged to a NH, someone can call AA for him (it will be listed in the phone book under Alcoholics Anonymous), explain the situation briefly, and ask for a 12-Step call. They will send someone with good sobriety to see him for a one-on-one meeting. Then they can set up something where an AA member will come every day, or X number of days a week, to meet with him. Once he meets with several people, he can ask one of them to be his sponsor. That will give him someone who will follow him and who he can call any hour of the day or night when he gets antsy, or just needs someone to talk to. AA can also do 12-Step calls while he is in the hospital.

It is up to the transplant program as to what they will accept. Maybe they will accept the sobriety he has had in the hospital, but I think the point is to see how long he can stay sober in the outside world--the litmus test for sobriety. It's not that hard to stay sober in a controlled environment, but once at home or in the outside world--it's a whole different story.

Hugs,
Connie

That's what it's all about: Sober alcoholics helping others trying to get and stay sober. It's how and why AA works so well.

Hugs,
Connie

Does it have to documented through AA? There must be a way for people who are sober but too ill to attend meetings to get the documented proof. Do you not have drug and alcohol counsellors in America who may be able to visit a patient so that they meet this criteria. It seems a bit rough if AA is the only option for this, as AA is not for everyone and people who need help will fall through the cracks.

Hello klst, and a big welcome to HealingWell.

I, 2nd,3rd and 4th everyone's else with there should be a home visitor program for people who are too sick to make it to meetings.......Or even an online meeting that would meet the criteria. It broke my heart when my husband would go to his meetings sick. He was bound and determined to make their number of meetings.

Each transplant hospital has there own criteria. My husband's wasn't a 6 month program..Although most are.....It was like so many documented meetings that he had to attend before they would re-evaluate him. He did his in 3-4 months and that was fine by them. So talk to the nurse that is in charge of his case, see what his hospital requires.

I just want to tell you what a wonderful niece you are to help out your uncle this way........Let him know he now has a whole group of online friends rooting for him.

Take care........thoughts and prayers.......

Hi KLST,

My Mike went to AA 4 - 6 times a week VERY ILL, but he went as that was what was prescribed by the transplant center. But in the end, they were pretty flexible about it..once he started to attend meetings, they started the process at their end.

Who was ugly and specific about it was Medicaid. Tare more the paper pushers to be honest. And in the end, we were glad Mike had done it by the book!!!!!

Once he quit drinking he gained some "time". His labs were better most of the time, except for his renal failure emergencies. He went to meetings unless he was in the hospital.

Good luck,

Mama Lama

Kist (and others) there ARE online AA meetings:

http://aaonline.net/

However, I doubt this would be approved as there is no way to document your attendance unless you print out the chat when one is there.  I think 12-Step calls would be accepted, but each transplant center is different.  Some do accept alcohol counseling instead of AA.

Kist, I am shocked at how high your uncle's MELD is.  It's hard to say how long he will be able to hang on, especially if they require 6 months of documented sobriety.

Hugs,

Connie

Piece of cake if hes gonna be in a nursing home... set up a data sheet which the nurse on duty would be responsible to sign for when he goes online for the AA meeting... or a manager on duty... have a signature sheet that goes with the data sheet with name and title for each signature... of course you have the dates and times of the AA meeting... and yes a print out of the beginning of the chat or ending... possibly be able to explain the situation to someone... if you could get onto a regular online AA chat... might be able to coordinate something with the online administrator... that should be enough documentation somehow in there... and maybe add meetings to an addiction counselor... who would review the sheet or something to that effect... Sandi

Kist, I'm afraid that the sober houses won't take someone with ongoing serious medical problems.  They are not equipped for that.  In addition, he would be required to attend a meeting a day, plus house meetings.  Is he well enough for that?  Yes, some nursing homes are nasty, but the ones that include a PT section are better.  I've been to one the last 2 times I had my hips revised...discharged directly to there...and was in the PT section.  The entire place was immaculate and run well.  I had 3 hours of PT a day and stayed 10 days to 2 weeks.

What did AA mean by "when he gets settled?"  I assume that means after discharge.  Maybe they feel he is off the booze now in the hospital, so he wouldn't need them until after discharge.

I hope the transplant committee decides he's a good candidate.

Hugs,

Connie

Calvin is still in the hospital and probably discharging today. The transplant committee meeting was yesterday to review his case.
He called and said that one of the team hepatologists was in to see him this morning and told him that he hadn't been compliant with his PCP follow up visits and that he would not be getting a liver. MELD score = 42, I'm floored.

I was not there and I just wonder if he heard her right?! I just can't imagine a doctor that had never met him before would come in and very matter-of-factly tell him he would not be listed because he didn't take his meds like a good boy or see his PCP enough. He didn't even have a PCP! No money means all his medical care was done through ER before he got his referral to transplant, then signed up for Medicaid/Medicare/Disability. We do have a PCP who will follow him now, but he's been HOSPITALIZED since he was referred to transplant (except a short period, not even a month). How do you fall out of compliance in the hospital?!

Something must be wrong, I just can't believe this.

reading back.. the doc was saying that "he doesn't have a history of compliance" ... seems they had already made their minds up... I would really try to figure that out better... now for the other part... don't give up... but talk to him.. and lay it out... so ask what he has to do to show compliance... and then document it and do it... him not you... thats what they want to see is him...but I wouldn't give up... hes sober... document that... are there other programs that might take him... always look for other ways.. specially if hes sober... maybe others will have ideas... Sandia... don't get negative get busy... hes still got breath... hes still sober... go for it... dont take no for an answer... go back at it again.. Sandia

David, I agree with what you said.  However, not showing compliance with a PCP when he hasn't had one...and been in the hospital more than out, so when would he have time...especially getting one for the first time.  Now meds are something else.  It DOES matter if he "doesn't take his medicines like a good boy."  That's NON-COMPLIANCE.

I do think your mother should question the PCP part, especially now that he has one.  But he is absolutely going to have to show the willingness to do whatever it takes to live...and be worthy of a transplant.  It is NOT all about the MELD score.

I've been complaining like crazy to friends and family about my transplant evaluation.  However,  I don't complain (much) to the pre-transplant folks or my hep doc.  I know they are looking for compliance and the will to live, regardless of what I have to endure.  I look at it as a job--suit up and show up.  That works for me.

Hugs,

Connie