drinking with hep c

My friend  has End Stage Liver Failure. He has hep c -- has not been helped by drugs and is now trying to get a new liver.   He is in the beginning steps of getting on the liver transplant list -- problem is he is still drinking.  He basically lies to the doctors and says he hasn't had a drink in 3years.  My question is -- Will they figure this out??? I feel very guilty because I have become part of this lie and I know there are people who really are doing the right thing to try to get well and he is trying to "beat the system" to extend his life but he is not willing to fight for it -- please advise. Thanks.

[LDTR01]

My understanding of how many transplant centers handel this is they require 6 months of "proven sobriety" before they will even consider a candidate for a transplant evaluation. "Proven" means they must be in a program and attend regularly. They must also agree to random drug and alcohol testing with labwork which I might add is usually pretty frequent. Even if they manage to get listed after the 6 months, they must still be subjected to the random testing until their transplant. If they ever test dirty, they are taken off the list and it's very difficult to ever get listed again.
I knew someone who also thought they could beat the system, they didn't and are now dead.

[molee]

Thanks for the response, I know there has to be some way that they will figure this out but so far this hasn't happened.  He knows when he is scheduled for a blood test and just doesn't drink before the test.  This has been going on for over the 2 years that I have been going with him to his appointments.

[Thomas D Schiano, MD]

it is very difficult to carry on a charade forever and eventually he will slip.  the best thing to do now is have him seek treatment ASAP.  You do not have to admit things at this point but I strongly urge entry into a relapse prevention program.  if he is actively drinking at the time of transplantation, it will be apparant when the removed liver is examined.  Even more important is the fact that when some or all of one's liver disease is due to alcohol, it may be reversible at least in part with sobriety.  thus, his liver disease potentially could stabilize or even improve if he stops drinking.

[Thomas D Schiano, MD]

please get him into some sort of treatment program

[molee]

I wish it were that easy.  I can't make him do anything -- I can only change what I do - and I just can't "rat" on him - but I'm not caught in the lies and that is so not me.  We meet with the transplant team and I agreed to be his support - he will have to live in my home - I will have to take him twice a week for follow ups - the drive is over an hour away and the wait at the center can be 2-3 hrs. before you are seen.  I am making a major committement for him and he is ???  It would make it so much easier for me if there was some kind of test that he has to take that would show that he is drinking and smoking and killing himself.

[Thomas D Schiano, MD]

there is no such test.  however, it will be very bad if this is discovered when he is extremely ill and close to a transplant.  if he drinks after a transplant he will lose the liver and not get a second chance and he will ultimately die, as will as the person who died on the waiting list who didn't get that liver. he may actually get better also if he stops.

[kaceyt]

This makes me so sad.  I had a liver transplant five years ago come the 27th of this month due to Hep C and am thankful every day.  I wish I could be angry, but given that being an alcoholic is a disease, it is not that easy for me to condemn your friend.  However, I understand your situation.  
Please, please try to get him into some kind of a program.  As the doctor stated, when liver disease is due to drinking, cutting out the drinking will help the liver.  It is the only organ in our body that can do this and it is something he can do for himself.
I understand that he is frightened about the alternative, but he cannot be that selfish.  There are so many other people waiting for a new liver who will die this year because they cannot get one.  
Is he willing to take medication for the rest of his life?  Does he have any idea what the post operative care requires?  Since you are his caregiver, do you?
Sorry to say this, but you are already part of the lie.
Try to find someway to get him into a program.  What about an intervention???
Good luck.

[jmjm530]

Hopefully Dr. Schiano will correct me if I'm wrong, but I want to re-emphasize one part of his excellent advice.

Not only will drinking jeopardize your friend's chances of a transplant, but indeed if he stops drinking a possibility  exists that the liver will regenerate itself enough where a transplant may not even be necessary since a significant portion of the damage may be due to alcohol and not HCV.

So given the risks of what Dr. Schiano terms "slipping up" and the possibility of liver regeneration based on sobriety, I think some sort of forced intervention should at least be considered if your friend cannot be convinced otherwise.

Hope it all works out.

-- Jim

[molee]

I really don't know what I'm getting myself into - but I know I would be willing to do what I need to do if he were willing to do what he needs to do.  But at this point I feel I have to put a stop to being a part of the lie.  We just got back from a family dinner for the holiday and he had two glasses of wine and was telling everyone that he is waiting for a transplant. He is unbelievable.

[Trinity4]

Molee,

You can't make someone do something they don't want too.  People have to help themselves first in order to be helped.  He is faced with a life altering choice.  In other words, he and only he can choose life or death.  Don't enable him.  It seems you're the one that's bearing the brunt of the anxiety.  What's fair about that?  Sometimes we have to be cruel to be kind.  I hope your friend wakes up before it's too late.

Trinity

[Trinity4]

Just want to add it's very hard to read posts like this.  There are so many of us fighting the terrible effects of these treatment drugs trying to avoid ending up on a transplant list.
And there are some who have transplanted and endure treatment so they can keep the liver healthy they were given.

It's unimaginable to me your friend can't see the big picture even with ESLD.  I know people die of alcohol related illnesses every day and my mind can't wrap around how the alcohol becomes more important than living, but I know alcoholism is a disease too.

Just don't jeopardize your health.  If he refuses to enter a treatment program, tell him to find someone else to be his support.  Tell him you will not rat him out but you're not going to lie for him either.  Throw back in his lap and if sobriety means nothing to him you should no longer worry either.  

Sorry for being so forward but don't be a part of beating the system with him.  If he takes himself down, you need don't need to go with him too.

Trinity

[GreatBird]

What Trinity said.

I'm sure this is excruciatingly difficult for you.

[Teufelhunden]

So, you're saying you're an enabler?  Listen, there are a good amount of people on this forum that are fighting for their lives. If your friend doesn't care for his, why should you? When it's all over and done with, are you going to stand by his casket and say, "if only I could have done more"? Kinda to late then wouldn't you say? I knew a guy just like your friend. He always lied to his doctor about his drinking too. Even with his hepatitis he'd be pounding down beer after beer.  It got to a point where he was hoping he'd die from hepatitis before he would give up his beer. His wife and family were enablers too because even though they knew it was wrong they didn't do anything to stop him. Oh sure they complained about it didn't do any good. This went on for three years after he was diagnosed and finally one day, do you know what he did? He looked in the mirror that morning and what he saw was shame.  He saw all the misery he had caused and he saw sadness and grief and bitterness and pain. He saw life without him.  Shortly after that he stopped his drinking and started treatment.
You see, there's nothing you can do to change him. He has to do it himself. He has to want life so bad that he'll do anything, even give up drinking. Until he reaches that point in his life, there is absolutely nothing that you can say or do that will convince him otherwise. The smartest thing you can do is cut your loses and walk away. Just tell him if he wants to die he's going to have to do it by himself. Sounds tough doesn't it but you know what? Thats life. Whether or not he gets smart, your life and my life and everybody elses life will go on. He'll be left looking in an empty mirror,  What about my friend? He went on to do 48 weeks of treatment for his hepatitis. Unfortunately his treatment didn't work because his hepatitis came back three months after he came off the meds but for those 48 weeks he had a taste of what life is without alcohol and he liked it. No, actually he loved it! He loved it so much that to this day he hasn't had a drop of alcohol. Will he ever drink again?  I can say, without a doubt,  the alcohol beast that lived so long inside him is dead forever.  Lemonade is his choice of drink now.  And your friend? Don't let him borrow any money from you. He might not be around to pay you back.  Feel free to make a copy of this post and give it to your friend.  Let him know if he doesn't care, neither do I.   My life will go on...but his won't.  
Teufelhunden

[fretboard]

You seem like a nice person, but your friend is making you look bad and making himself look like a real loser.  It's a shame b/c obviously he thinks he's getting over and that's just so wrong on some many levels.  I suggest you put an end to your part of it.  He is so locked up in his alcoholism that he is totally self-centered and self absorbed.  Drinking messes ppl up bad enough and with a liver disease, whether it's HepC or otherwise, he will never get better.  His actions show how thick his wall of denial is, he will be found out, easily.  All you can do is be honest with him about how you feel, quit living that lie you are so uncomfortable with.  good luck to you- it's time for you to think about yourself

[KjFlicka]

This is such a great thread. My hepatologist informs me it's more common than not for people to continue drinking even in this situation. I cannot grasp it either. I think perhaps what Teufelhunden said in the 'shame' thing really makes sense to me. Here I was, age 34, and in a hospital being diagnosed with cirrhosis and end stage liver disease from drinking daily for only about 4 years. I have yet to make all my marks on this world, so I'm not finished yet! I was horrifying, truly, and embarassing to be that young with an 'old person' disease admitted to a hospital next to the elderly lady with a stroke. Needless to say, my eyes were permanently opened and I have been easily sober since then. I'm lucky in that my liver actually did kind of 'recover' and is *still* improving!

Nicole

[molee]

Thank you all for your comments -- My "friend" is really my baby brother.  I don't know why I didn't say that from the start, but I think I was afraid that he would find this and be angry at me.   I just forwarded him this thread -- I want him to read the responses -- I have decided to stop enabling this situation and have put the ball in his court.  He needs to get help and stop drinking or just live his life and what will be will be -- but it is just not right for me to support the lies.  

[molee]

I haven't written since April 9th when I sent a copy of this thread to my brother.  He never mentioned it - he has been very weak -- about 10 days ago he fell - counldn't get up and crawled across his driveway to get to a phone.  He has been in the hospital since -- he admitted to the drinking and has gone through detox -- unfortunately it is too late -- he signed himself into a hospice program today  and will be going into a nursing home at the grand old age of 52.  To all of you out there that think you can drink with Hep C and go through treatment -- it doesn't work!!!  This has been a very sad day for me.

[GreatBird]

I'm so sorry to hear about what is happening with your brother. Thank you for coming back and letting us know.  

[Fl_Gator]

I'm sorry for you...I know how you feel. I have a friend, she has been my best friend since jr high. I don't know if she has HCV but probably cirrhosis all she does is drink...no food...small hand full of cashews and 3-4 cherry tomatos a day. She has gone from being beautiful and vibrant to emaciated...she is 5'9" and weights 105. She has lost 60% of her muscle mass. She recently lost her job, she lost custody of her son and hasn't seen him in 6 years. Her third husband divorced her so she is now moved out of their intercoastal water front mansion into a small two bedroom wood frame house next to a rail road track and under the flight path of a small air port.

The saddest thing is that she won't admit that it's the drinking...she blames everyone and everything else. I love her, she was closer to me than my own sister when we were groing up...but she lies to me and everyone else about the drinking and most everything else. I can't help her...I can't even talk to her most of the time...it gives me anxiety...I want to see her happy again but I don't think she is long for this world....she is only 45

[Trinity4]

It is indeed very very sad Molee.  Sending strength to you are your brother and he's very lucky to have you during this terrible time.  Thank you for the update.

Trinty

[Magnum]

If he doesn't stop, try to spend as much time with him now as you can, because he will be gone sooner than he thinks. Fighting Mother Nature has always proven to be a losing proposition, and his continuous drinking will prove that.

If instead he does stop, the damage he is doing to himself right now will have taken it's toll, but hopefully can be salvaged with a transplant. I don't know your friend, but I feel he may have a death wish. Maybe he WANTS a way out...

At any rate, comfort and don't criticize, share the burden and not take it all on your shoulders if he is a dear friend, and if you're religious, say a prayer for him because he needs all the help he can get, here and from above...

Magnum

[molee]

My brother is still in  a hospice house -- it has been 12 long hard days -- he is dying a slow painful death - his three kids have been with him - 28, 23 and 21 -- lots of friends and relatives -  I really just hope that his kids see what the drink has done to their dad and not follow in his footsteps -- he is (was) a fun guy, everyone loved Harris -- he was the party boy -- but what is going on now is far from a party.  

[virgocharm]

i have a gf just like that. we both found out we had hep c at the same time. i got proactive, she got not  proactive. i am in 33 weeks of tx now. she has not done anything about it but drink and drug. and she knows all about everything our freindship will always be, but i had to let her go. it hurts. i could not watch her deteriorate and here i am in tx because i love me. at  every chance she gets she find things negative to say about hep like there is no cure for it. i am und. she seen the papers. she calls to let me know she had a drink or smoked some weed. i m like why is she telling me this. i am all in to my tx.i just say its the devil.