Hep C and Alcohol, what is next?

Nobody can predict when everything will cause him to go past the point of no return. Doctors have a hard time guessing at that themselves. However it would seem he is heading towards that point quickly. I hope he's not under the impression he can drink himself painlessly through this. Drinking as you likely know only makes it worse in so many ways. Should he for what ever reason decide to try fighting this and living he will have to go through a six month verified sobriety period before transplant could be considered.

Without him being seen by a physician there is no way to get a accurate picture of where he would be placed on a MELD score. That takes bloodwork. As crazy as it may sound he needs to see a doctor immediately and start going to AA or a approved form of addiction counseling. Without those two things he stands no chance of survival. His condition will worsen and you are going to be left with some very painful decisions to make.


Ziff

When i get depressed he tells me that we will have the time that we have and i don't need to get depressed or worry about him but i can't help it. I love and care about him. I am very scared about. The. future

Thanks for your advice. I do appreciate your comments

There you have it. Splash has been through the wringer several times and she is one of our many valued assets in caregiver information. Please take heed to every word she said. Thank you Splash for stepping in and sharing your painful story. That took guts my friend.


Ziff

bivins, welcome to the forum.

Four years ago, I was in your exact shoes. My partner, Mike, was a drinking man, a good man, but he loved his beer, wine and gin/tonics. A lot. He had known he was Hep C positive for many years and that he could not drink alcohol. He was sober for a year in 2003 when he did a treatment cycle for his Hep C. Then gradually he took it back up again...a sip here, a glass there, and a lot over time.

When his MELD was in the teens and his liver biopsy showed cirrhosis for the first time it was 2004. The Hep at Mt. Sinai in NY told him that if he stayed sober, he could go 15 years on that old liver before hie got himself in trouble. Wow...15 years. Party time. He was only dying after all, the he** with it!

What he got was 5 party years. By 2009 he was a sick man. All the symptoms you mention. By 2010 is was a walking dead man. His Meld was 26, he had every symptom in the playbook and was loony as well...the hepatic encephalopathy about did ME in and I wasn't the sick one. He was dazed, confused, angry, aggressive, compulsive, and generally awful. He could not drive as he was not able to make good decisons, and forgot where things were.

When he could not stand the smell or taste of anything, he lost a lot of weight and quit drinking...Sept 27, 2010. A date I will always remember, for sure.

He started with the one week a month hospitalizations for kidney failure, sepsis (he almost died that time), more kidney failure, low sodium, horrible pancratitis, and more kidney failure. While he was in the hospital in early 2011, they started his transplant evaluation so that he would be able to be listed the second he reached his 6 months sobriety.

Meanwhile he took everyone's advice, went to AA 4-6 times a week and started feeling a bit better about himself and his fate.

We planned his funeral just the way he wanted it. We got his estate in order with some participation by him. He signed a medical proxy and a DNR. We faced it directly...he was likely going to die.

Then two things happened at once...one bad, one good. They found liver cancer in a difficult to reach place, so it was not eligible for treatment. BUT is was very small and he got through the last sober month, got on the list. They gave him exception points for his tumore and he jumpted to MELD 22, and then his body really started to fail. He was transplanted 3 years ago May 1st. He has remained sober, has had a difficult recovery.

But now he is on an antiviral treatment for the Hep C and he feels better than he has in YEARS.

Who knows how long you get with a transplanted liver....but every day he is here is a miracle.

So...does your guy want to live? It is up to him.

But right now, being his caregiver is what you have chosen. Choose some other things too. Put his affairs in order, as Ziff said, get the power of attorney, get his medical proxy, know what he wants to do about intubation, feeding tubes, dialysis, etc as his final days may be very difficult and it will be horrible to have to make decisions at that moment. Know what you might do and then you can implement the plan with a clear conscience.

Also, think now about your plan...your "what if" plan.

I have another plan. If IF IF, my guy were to start drinking again, his liver center said they would not continue his care. And I will not stand by him again. If he wants to go back to that life, he will choose to do it alone.

I wonder if I would be strong enough to do that if there were a next time. I stood by him for many years, love him with all my heart, but our contract NOW is "sober forever."

I wish you well, this may be a bumpy ride.

Hugs,

Mama Lama

I don't know how old your children are but is it possible to have them appeal to his sense of fatherhood?

Btw, Splash nailed it....ELSD caregivers have a horrible and often thankless job. It takes a strong, thick-skinned person to stay in it for the long term. It WILL get to the point of frequent hospitalizations and/or 'round-the-clock care. He can't be left alone when the disease progresses to a certain point. I hope you have a strong backbone and plenty of time on your hands.

It's a very selfish thing your hubby is doing, especially to his children. For them to witness the ugliness of ESLD when he could choose otherwise, is just heart-breaking.

I usually have a lot to say on the subject, but my fellow forum-ers have covered it pretty well.
Please don't hesitate to ask anything at all, many of us have been in your shoes and are happy to help in any way. We don't judge your hubby but we DO tell it like it is, so please keep us updated.

You should print out this thread and let hubby read it or leave it by his bedside when and if he is in "compliant mode".

Apparently he is well enough to get his own beer?

All the best to you and the fam, especially those children.

The emotional rollercoaster is because i know what is going to happen and not wanting it too. I am scared pretty scared about what is going to happen and how i will handle itand being a widow in the future is inevitable.

Have you tried Al-Anon? It's a wonderful group that a lot of people swear by. And your husband can still turn this around. Is there anyone that can talk with him, besides yourself?

Post Edited (Splashdancer) : 4/26/2014 3:28:48 PM (GMT-6)

Alot of times i feel quite alone in my emotions of his illness and what he is doing to himself, our future. When i tell him that im upset. He tell my to stop having a pity party, hes the one sick not me. I think it affects me more than it does him. I have talked to his family about it and they say the subjectis to depressing and for us to change the subject. So i really have noone to talk to about how i feel exept here on this post. Thanks for all of the insight good and bad

I just read your other post. When he tells you to 'quit having a pity party - that it's him who's sick, not you' - THAT is where he is SO wrong and he needs to somehow start understanding that. His illness IS causing you (and your children) to suffer. I know what you mean about feeling so lonely in this - it's in the nature of the disease. It's a real shame that his family has their heads so entrenched in the sand. Are there other alcoholics in his family? Another thing...you aren't alone anymore if you choose to stay on this forum!

Well, ok then...he is in some deep denial and that's where those answers are coming from. I had to (sadly) laugh about his comment about the pain meds - since the alcohol that he says is better than pain meds, is actually the reason for most of the pain he is experiencing.

You asked about time. Although it's very difficult to give a 'time estimate' with liver disease because it is so unpredictable, I'm going to give you my opinion. And I'm only doing it because it appears that your husband is just not going to quit drinking, nor get treatment for his medical issues. And I'm also doing it because you have 4 children and you need to make preparations. You said your husband is already 'very sick, nauseous, tired all of the time, has pale diarrhea, dark urine, an enlarged liver, swollen stomach, and joint aches'. Add that to the fact that he is still actively drinking 18-24 beers every day - I'd say that IF all things remain the same (drinking+no treatment), he has less than a year - maybe 6 months to a year. Maybe less, maybe more (but I doubt that). I base this on what I have seen myself and through past research. You'd have a much better idea if he would at least go to a doctor for some bloodwork. I want to add that are those people who, for whatever reason, live for a few years in the condition that your husband is in - but they are very few.

The next thing that may happen is an esophageal bleed (burst blood vessels in the esophagus/stomach will cause vomiting blood, sometimes violently). Maybe, just maybe, after he is rushed to the hospital, and if they can stop the bleeding in time, he will 'wake up' to what he is doing and start doing the right thing.

Please do the things that Ziff suggested - they are so very important. And also, please consider Al-Anon for yourself - they can help you. I know you love your husband and want to stand by him - I totally understand - but you HAVE to take care of/look out for YOU (and of course your children) too.

I hope I have not upset you. I am not a doctor, nor do I have a crystal ball - I'm only offering you a 'guesstimate'. (Try to) have a peaceful day.....

Post Edited (Splashdancer) : 4/26/2014 5:51:05 PM (GMT-6)

Yes he does and that is hard to because i am his enabler but i know he will get it if he chooses. Th
thanks for posting. I read all of them and this gives me idea what i will go through in the near future. So i can prepare for it