Husband and jaundice : Last appt with... - British Liver Trust

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Husband and jaundice

bjfewell profile image
10 Replies

Last appt with surgeon husband was told liver was totally shot. Now drinking more than ever...1/2 gallon in 2 to 2-1/2 days plus beer. I'm assuming he's just given up which I completely understand. He knows he can't/won't quit. He quit taking lactulose few months ago and now he's a golden yellow and is having a difficult time connecting his thoughts.

Once again I'm asking the question no one can answer m..how long can he last in this state ? Five yrs ago he was told if he didn't quit drinking he'd be dead in 5 yrs...it will be 5 yrs in June.

Any insight will be appreciated.

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bjfewell
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10 Replies
fizzix50 profile image
fizzix50

Honey this is the million dollar question, one I think spouses of alcoholics will all relate to. A lot depends on what gives next - could be a variceal bleed, could be heart failure, could be a number of things, but the complications of liver disease are usually the deciding factor. The last five years must have been really tough for you, If you can persuade him to take the lactulose it would help - it doesn't only act as a laxative which gets rid of the toxins in the body, but apparently helps with the absorption of ammonia - which is what affects the brain and makes thinking/making sense difficult. Tastes disgusting I know but it might help. You are stronger than you think - you must be - it is much harder to stay in a difficult relationship than to go. All you can do now is be as kind to him as it is possible to be - this is a terrible disease - so you can look back on whatever time you have left with no regrets. Have you discussed hospice care at all? Even a short spell would give you a break and ensure he has all his medical needs met....

carllovatt profile image
carllovatt

great answer from fizzi written with understanding and empathy

bjfew once he stops drinking he stands a chance, but if he is still drinking, yellow and not taking any meds. you have no choice but to plan for the worst you know it will happen soon.

believe me I know planing for that day makes it realer, but planning it with him may make him stop ie 'where did you put those papers what music & after'?

love and peace carl

retwos profile image
retwos

what a shame I feel for you

Geffy22 profile image
Geffy22

Hi

I can only share my experience with my hubby.

He was so yellow it was like the sun was shining back at me, yellow eyes as well his bilirubin level was 500. Over the course of 4 weeks his bits swelled up something horrible (apparently normal!) and his bilirubin levels went up to 800.

He had fluid on his belly and brown pee throughout his last few weeks and probably a lot longer than that - I don't know cos he was working overseas and I hadn't seen him for a couple of months. He was though completely lucid up to the evening before he died, but I had been telling him for months he had a problem with his brain function - he couldn't remember anything

Once the bilirubin levels hit 800, he had a very bad oral bleed over night, lost about a litre of blood. I was told he was palliative and if he bled from the back end that would be it. That evening he started bleeding and he died the following day.

My hubby said he know long before that he was dying but he kept it to himself cos he didn't want to see us all upset. It doesn't matter how the liver is damaged, if the damage cannot be arrested, then the sufferer takes their next step on the journey of life.

I can honestly say, watching someone die due to liver failure is horrendous. My hubby was comfy and he tried to talk to us which was just so him - fighting to the end. The hospital were great in managing the pain for him, but having to keep leaving him whilst he was cleaned up was very hard.

I didn't get time to plan, so please take some time for yourself now, as others have said start planning things with him because he will come round take his meds etc and he with you for a good while yet.

Sadly, if he does leave you, do not underestimate the deep shock you will feel even if you get chance to prepare yourself, the loss of a partner is not like the loss of a parent or close relative. Please gather your family and friends around and ask them for help.

I am so sorry you are facing what I went through last year, I wish I could be there to help you.

Bless you both xxx

soooze50 profile image
soooze50 in reply toGeffy22

Such an honest and compassionate reply, so generous of you to share with us here, x Sue

bjfewell profile image
bjfewell

Thank you all for taking the time to respond. I have done most of the things suggested. He wants nothing to do with ANY planning about anything...he prefers to stay "comfortably numb"! That's just who he is...always has been.

I've done everything I know to do to live with myself 'after '. Last year he finally went inpatient but due to insurance he could only stay 3 wks; everyone knows 3 wks is a joke. He did attend AA for awhile but after 2 to 3 months he was drinking again. Every time he has tried to quit he only drinks more when he starts again.

Maybe I'm being selfish but at this point I really don't care. I know he loves me and I know this is an addiction.

I had been sober for almost 20 yrs until he retired and brought liquor back into our home. We fought constantly until I decided I'd rather drink with him than fight. That worked for awhile but then I hated both of us. Next I attempted suicide 3 times, each time in front of him hoping he would realize I just couldn't take it anymore...of course, being an alcoholic, he just got angry because I was interfering with his drinking!

I've gotten myself back on track and have an amazing therapist who's helping me get through this and it's working. She's helping me see that I am entitled to a life regardless of what my husband does. I still love him and will be by his side till the end...after all, I met him when I was only 14yrs old and he's the only man I've ever known...I'm now 65 and he's 67.

I have his arrangements made; I've asked what he wants but he won't discuss it. Again, that's the way he's always been. Ignore it and maybe it's not real.

Sorry this is so long...I still appreciate any imput anyone has to offer.

Thanks so much

Lperica10 profile image
Lperica10 in reply tobjfewell

So sorry you are going through this. I just went through this not long ago with my father and he did pass away at 63 (in October) from cirrhosis. I wish I could offer something else but I can share my experience with this horrible disease and addiction. I also agree with everything Geffy22 said above- similar experiences. My dad quit drinking in June 1 2016 and his health was declining. In July hospice was offered he was stubborn and in denial so declined. August was spent in and out of hospitals/ physical rehabilitation centers, etc. then sept he went to the hospital and did not come out. At the end (last few weeks) he was confused (but it would come and go), he was fighting multiple infections-c diff was one, and his kidneys function was almost at a 0 too. He stopped producing urine and it was dark. In the end, he had an internal bleed and went into shock, barely made it to hospital (at time he was out of hospital for a few days at another physical rehab center). Low blood pressure, high lactic acids levels in his bloodstream, and blood loss. They were able to put him on life support until everyone got there. (But he was already gone, I believe he passed that day). We kept him on for a few days- they had to give him blood but they told us his body was on its way out. I knew in my heart it was true because it was "the end" of this awful disease and he was not responded to anything. After exhausting all options and running all tests- we made the choice to let him go. I also wanted to mention I was with him the night before all this and he was having normal conversations and everything but he was the yellowest color-skin and eyes. Something that only happened the last 2 weeks of his life or so. Hopefully sharing my story could help you. Best wishes and thinking of you.

bjfewell profile image
bjfewell in reply toLperica10

I'm at the point where one day I'm sure he can't last much longer then he seems to rally and do better. It's such a roller coaster of emotions.

I'm aware when I ask for others impute it opens their wounds; for that I'm truly sorry...but I keep doing it so I guess I'm more concerned about myself.

Thank you for sharing.

66766 profile image
66766

Is there any chance at all for transplant if he decides he wants to stay with you?

bjfewell profile image
bjfewell in reply to66766

Even if he were to quit drinking, his health in general is very bad. No chance for transplant.

Thanks for asking.

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