possible trigger, alcohol question

Hi Group,

Please, I mean absolutely no disrespect in my query.

I am going to use the hypothetical here, as I am not referring to myself. The patient is an amalgam of people I have known over the years. Some were very ill, some not so much. They were not all liver patients. I guess the common denominator is that they could make themselves sicker if they did not follow doctors' orders regarding their behavior. And by this, I make absolutely no judgement nor comment on the viral status or behavior of anyone reading this.

The hypothetical patient has cirrhosis due to anything other than alcohol addiction. The cirrhosis was caused a virus, or autoimmune, or genetic - whatever.

The hypothetical patient never was much of a drinker, ever in their life. A glass of wine with dinner once or month or so, perhaps two beers at college parties or weddings.

The hypothetical patient's health is heading downhill. The patient has mild HE, portal hypertension, esophageal varices - you get the idea. Low clotting and platelets, extreme fatigue - the whole shebang.

However, the hypothetical patient feels relatively good - say 25% of the time. They are not nearly sick enough to have a transplant. The MELD score is low. In essence, the hypothetical patient is sicker than the three numbers that make up the MELD would indicate. On the other hand, the hypothetical patient is depressed and angry over the vast limitations the cirrhosis has caused. Despite meditation, prayer, family support and good mental health care, the hypothetical patient remains despondent most of the time.

The hypothetical patient would like to have a glass of wine on the rare occasions they go out. The patient feels that at this point, what is one glass of wine going to do other than perhaps shorten the time till transplant - which at this time, the patient feels would be a good thing.

And often, the hypothetical patient would like to drink moderately, take some benzos to relax and maybe smoke some pot. The patient sometimes thinks that they may as well make themselves get sicker faster so that their MELD would move up more quickly and they can move down the long road to transplant.

So, the patient would like to ask if anyone else feels or has felt this way, and what were their thoughts on the matter. Criticism is welcome. Facts are welcome. Honesty is welcome. But please no mean spirited stuff.

(Susan here) I feel funny asking all this. I have been exceedingly compliant and gone above and beyond to keep myself as healthy as I could for as long as I could. But at times, I think about those I know/knew that were not compliant - no matter what their disease. I never really understood people who deal with their own illness with anything other than full and complete compliance. It was how I was raised - my mother was adamant that all doctors' orders were followed. No fooling around with prescriptions or illness. OK, she was not perfect in this regard - she refused to believe me when I broke my arm as a child....But that is a story for another day.

Thanks in advance for your replies.
Susan

Thanks for your reply. There are lots of things I'd like to do that I do not do because I have been instructed not to do so.

If I really want a drink, I'll consider having a drink. But after some thought, I always choose health over short term desire.

But I know others who fiddle with their doses, eat and drink banned substances, stop taking meds because of unpleasant side effects, etc. These are not just liver patients. I am thinking of heart patients, diabetes patients, etc. They can't all be trying to hasten their death.

And, how would the transplant team find out if a cirrhotic patient had a glass of wine with dinner last week? Or if the patient took a friend's xanax or ambien ? Or any other drug that is bad for the liver - like NSAIDS, or heck, I don't know.

I suppose my question is not clear because I don't want to insult anyone. And I don't even know what exactly I am asking, except that I know some people are willfully noncompliant and I've never quite come up with a good answer as to why.

Schim, I'll play along!!! First of all hypothetical questions are infinite. You know they are always subject to change strictly at the will of the questioner. Gonna be a tough one but I got my dancing shoes on this morning .

If this person decided to do whatever they wished regardless of warnings by their doctors, I'd suspect that there will be consequences. Minimal or Maximum but consequences none the less. Yep, It's in our nature as humans to be deceptive regardless of how trivial the truth may be. Can't go into that for the sake of others sanity here. Back to consequences. We all learn from a early age we can't get away from doing wrong for ever. It sneaks up and bites us on the arse eventually. A lie creates another and eventually it gets so outlandish the truth is exposed. Even the village idiot becomes weary of listening to non sense. (So said the village idiot).

You can pass drug test with masking chemicals sometimes, You can possibly stop drinking a few days prior to your hospital visit. You could stretch the borders of your morality as far as you like, There are theoretically no limits to what you can do but there is a limit to how long you can do it. Call it God, Call it Karma or human DNA, makes no difference. What goes up must come down. Why waste the precious time we are allotted in the air by hastening our fall to earth? Mom used to say "if Timmy jumped off a bridge and his friends said it was cool, Would you jump too?" Timmy has bad orthopedic problems now that we are older.

Schim, "They" or "We" can do what we wish. Question is what is the consequence? I believe you kinda said that yourself in your last post. Is it a lie if you avoid being caught? Some say no. Unfortunately for some, They still have souls and whatever that constitutes it tends to "out" bad behavior. Got a soul? Give it a try. None of us are perfect, We don't have to be. We do (at least most of us) have to answer to ourselves and that's a much higher standard than that of the medical community or other humans in general. Be good to yourself.


Ziff

Is hypo-patient on a transplant list, or wanting a transplant? If so, they would be foolish to risk being booted from list. Also, benzo's make HE a lot worse. Every person has a right to live as they choose. But if one is on a transplant list, there are rules...with any MELD score. Big Hugs

So I am editing to add more, hah! Since hypo-patient has HE, he/she has altered mental state in degree's, risky behavior, poor decision making skills, and often...the inability to know when HE is present. Deciding to take a benzo or have a drink may not be something hypo-patient with HE would do if they knew they had an altered state.
More Hugs,

Thank you all so much. Really, I feel like crying - I am so touched by your responses, arneeb, themiz, david and ziff.

There were times, and there are people I know who just keep being non-compliant. Sometimes I can understand their point of view, or their demons, but at other times, I just don't understand at all.

I guess it is best to perhaps mull this over for a bit more, then let it go. I bought a fancy-pants natural orange soda today and enjoyed drinking it slowly outside in the sun. It was a good thing.

Susan

Quick question.

I was listed for tp when I first got sick in 1996.

Alcohol use was never an issue for me. I remember being asked if I drank, but I barely drank at all even in college, so of course it was simple for me to tell the truth that I was an extremely light social drinker.

I don't recall being tested for alcohol use. Is there such a test? I can't recall exactly, but when my ex-husband an I were being asked all these questions, we answered that we were both extremely light social drinkers and that was that.

Are things different now? Does anyone have the idea that transplant centers are much more vigilant about finding the truth regarding the patient's behavior regarding any self destructive or harmful behavior?

Susan

Interesting, David. So, there is a test for alcohol use? I don't know why I don't know this. I know they can test for very recent usage.

It is also very interesting that MGH thinks pot use (I assume light pot use) is ok. I never used, as my ex wanted to become a lawyer back when we were in college, and he would not do anything that was in any way even remotely illegal for fear of being denied admittance to the bar. He was always a bit too tightly wound. He could have used a joint now and again.... : )

Thanks for your reply.
Susan

Schim, What you have to consider is that most alcoholics (MOST) at some point can't function daily without a drink. Be it the one to "take the edge off". Or the couple to loosen them up before a outing. I'm not all saying every alcoholic operates this way but most that i know. Myself at one time also. I felt I had to have it just to be me. Hard to imagine how you wouldn't eventually slip up eventually with repeated hospital visits.

The six month sobriety part of pre-transplant is when they started really trying to nail my hide. The looked at me before in the 2 months prior to that but testing was more frequent and random when pretransplant came into the picture. You get your blood drawn and it will be tested for everything. One drop of alcohol or unauthorized medication detected and your done. Don't know how other hospitals are but UNC Chapel Hill is strict. It is made clear from the moment you join in and they scrutinize your behavior to boot (Psychology).

As David has mentioned in a few of his post "It's their liver" also. They are about statistics and they aren't going to risk failure if you don't seem willing to do your part. They want success stories in medical papers and awards etc. It's not a option for them to loose a patient. It is our obligation to do what is required to meet the criteria. We are a risk. That's just the reality of it. They know the success rates of addicts to stay sober. They are doctors but they are also human and everyone most likely has a personal experience with a addict who can't seem to get sober. I don't know what goes on behind the doors of the comity meetings but I wonder how much personal experience plays a role in approval for transplant. You can't fool these guys.


Ziff