Cirrhosis Support Group

Some of you may remember me from last winter/spring. I stopped checking in because my husband was doing so well in his recovery from ALD. He had stopped drinking and labs were beginning to show progress.

About six weeks ago, I discovered he had slipped back into his old, self-destructive habits, even after admonitions from every doctor who warned him that resuming drinking would kill him. He seems to be in an incredibly strong state of denial. When I ask him if he has done anything to pull himself out of this mess, he'll merely say, "Not yet." One time he admitted he was disappointed in himself but that my harping about it doesn't help. I'm sure he's right, so I've basically backed off.

Because he was doing so well, his doctor had lengthened the time between his appointments, so his next office call isn't until early August. I wonder how the lab results will reflect his return to the bottle. Will it bring him to his senses?

I try not to project too much into the future, but it's difficult not to see a very bumpy road ahead for us. While my husband was hospitalized, one of his doctors was not very confident of his prognosis, even if he did quit drinking. No doubt his hemochromatosis will also be a factor in his future health.

As unsettling as the facts may be, I'd like to know what a typical ALD decline entails. I've now experienced the horrors brought on by an alcohol-induced trauma (multiple falls/broken ribs/punctured lungs), but that was so rapid and so dramatic I can only hope we won't have to repeat that. I realize that the disease progression is different with every person, but what are some of the most likely "givens"?

I have come to the realization that there's not a thing I can do to wipe away this monster of addiction so I need to approach it with as much understanding as possible. I prefer to handle this problem head-on, trying to take in as much information as I can. Rather than going into a state of denial, I need to understand and prepare for the inevitable. Does that make sense or does it sound as if I'm a total defeatist?

So, there we have it. After six months of observing my husband's return to sobriety, I feel I'm back to square one. Now I have to work through the grieving process once again.

Right now, I guess I need some cyber hugs as much as anything. My friends and family all see me as a very strong woman, mainly because my husband's illness over the past 15 years has forced me to become quite independent. It would be tempting to walk away from all this; but I have over 50 years invested with this man, nearly 46 of them married to him. This was certainly not the way I envisioned our final years together.

((HUGS)) ((HUGS)) AND MORE ((HUGS)) I am so sorry you have to endure this, but I am sure your strength will carry you through. As you pointed out you are strong and independent and for that you should be proud. Cheryl

Hey Deanna!

I'm so sorry that your husband has made such a poor life-style choice given his earlier issues! I'm sorry to say that given his active cirrhosis, hemochromatosis and the return of his active addiction to alcohol, his prognosis is pretty grim. The iron overload of hemochromatosis is aggravated by the alcohol, both of which accelerate to deterioration of liver function through continued scarring in the rest of his liver. No one can say how long the process takes.

Please know that we are all here to help YOU cope as you deal with your husband's cirrhosis!

Deanna

I am so sorry this has happened. Denial is such a powerful thing. There is a huge difference in being realistic and giving up.

Most patients that relapse deteriorate quickly , But there really isn't anyway to know for sure. You are such a strong person I know you'll handle this regardless But please take good care of yourself.

And know the we are all here for you.

My husband's doctors at the U of I warned him that if he started drinking again, it would probably bring on a rapid deterioration. They indicated that what had been a more steady decline before his hospitalization would, most likely, morph into a spiraling, out-of-control decline if he so much as had one drink. We all know that first drink will lead to another...and then another...

The "rapid deterioration" is the nebulous concept here.

Since my husband is in extreme denial, he is looking forward to three big trips coming up. We just returned from a two-week cruise to the fjords of Norway, and he did fine. He has never drunk while we've been traveling. (Go figure how that can be!?) Now we're only days away from our week-long family reunion with ALL our kids and grandkids. I have no doubt he'll manage that okay. There will be NO drinking during that time because his daughters are adamant that he is never to drink when they and their families are visiting.

We also have a trip planned for Vermont the middle of September and a huge Eastern Mediterranean/Transatlantic cruise beginning the middle of November. Yes, Jake loves to travel; and that's the one thing that seems to give him pleasure. What I will never understand is how he can manage to stay away from liquor during our travels and yet, within hours after our arrival home, he's back to his old ways. Even the doctors are perplexed how he can manage that. They're confident he's sneaking drinks some way; I'm confident he's not. I sometimes wonder if Jake favorably anticipates the traveling as he realizes it's the only motivation he has for not drinking.

As he talks about our travels for September and November, I try to be positive and supportive. In my mind, though, I'm thinking there's little chance we'll be able to make either one or both of those trips. I'm realistic and prepared to cancel, if necessary. I had to cancel two huge upcoming trips when he was hospitalized last fall, and doing so didn't break my heart. I think I probably always wondered if we could possibly pull off such an adventure. I'm at that point again.

Is it likely that, as Jake deteriorates, I'll first notice the symptoms he was exhibiting last fall before his hospitalizations? Or will all the issues that developed after the falls also be waiting to spring up and grab hold? At the time of his hospitalization, nearly every system of Jake's body was affected. We had specialists from at least six different areas lined up to treat him: neuropsychologists, pulmonologists, cardiologists, speech therapists (swallowing issues), hepatologists, and substance abuse counselors. Did I leave any out? Of course, his Family Practice team and the PTs and the OTs were also daily visitors. And, I had to be in daily contact with the dietician to get approval for what Jake could eat. That reality check helped me understand just how much the liver affects the functioning of the entire body.

Probably the first change I've seen since Jake has resumed drinking is his eating pattern. He was okay on the cruise (how could anyone pass up all that food?!), but he had six months of sobriety under his belt until shortly before we left. Now, though, he has slipped into his old rut of fixating on certain foods. He has always eaten a breakfast I've prepared for him, and that is the last time during the day he eats what I prepare--perhaps because the liquor consumption hasn't yet started for the day? Otherwise, pretty much all he's eaten this past week, for instance, is canned soup. Many days he skips lunch and then opens a can of soup for his "dinner" and sprinkles on a generous amount of crushed red pepper. Prior to last October, he was consuming can after can of sardines, many times two or three a day! In fact, he signed up for regular delivery through Amazon. Did I ever cancel that standing order quickly after he was hospitalized!

Always before, he was at least interested in big bowls of fresh fruit, many times wanting only that for a meal. In the past two weeks, he's rejected my offers to even prepare fruit. It's tough not to take his rejection of my food personally, but I have to keep telling myself it's the addiction talking.

He's becoming more reclusive again and personal hygiene is already beginning to slip...

It's so sad, so sad, indeed. Please, if you have any insights, I'd love to have you share.

This is really weird. My husband has been sober for about a year, but when he was drinking he loved eating sardines!! Now he has his strawberries and cantalope with his breakfast and is as happy as a clam. All I can tell you, is that my husband had a liver biopsy in 97 that revealed his cirhosis, and he finally got tired of feeling like crap every day to get him to stop drinking. I hope yours does not wait as long, they really just have to make the decision on their own. hang in there.

Deanna, this is indeed sad news. I'm without insights or advice on this and can only offer my sincere sympathy.

Have you tried to look into hypnosis to stop your husband's alcoholic tendencies? I would just like to speak for my experience with my uncle, who had therapeutic hypnosis done to stop smoking as he had done for many years and has quit cold turkey, I believe it has been 4-5 years since he stopped. Addictions are terrible, and you shouldn't have to deal with it alone. And perhaps contacting a dietician for a good idea on what he should eat is another good approach. I hope all goes well.

Hugs being sent to you.

Mpmom made the comment about the effects of resuming drinking, "Most patients that relapse deteriorate quickly, but there really isn't anyway to know for sure." That's exactly what our doctors told Jake. Can anyone explain why that is? I understand the cirrhotic liver is damaged and that scar tissue will always be there, but why does a period of sobriety followed by alcoholic consumption often speed up the deterioration process?