Recently diagnosed stage 3

[Beckley]

My partner has just been diagnosed with stage 3 cirrhosis. He hasn’t yet seen the gastrointestinal specialist and will do next week. He had 10l of fluid drained fro his abdomen last week and is starting to feel better. But he has now been struck with terrible depression. He used to drink daily, probably double the recommended amount but hasn’t drunk anything for the past 5 weeks and says he won’t ever again. He thinks he has only a maximum of 2 years to live. I know we are seeing the specialist next week, but until then can anyone give me any idea of what the prognosis really is? Is it a death sentence?

[Hidden]

Hello Beckley, and welcome. It's always easy to think only of the worst case scenario, but the most important thing is to remain positive. There are now some positive things that are taking place. Firstly, your partner has realised that this is his wake-up call and has stopped drinking. Normally a person who drinks every day, would have to go into a detox program. This is to enable the body to slowly adjust to not drinking, this is done by reducing the daily intake of alcohol. To suddenly just stop drinking can be dangerous for some people as to just stop can send the body into shock. I should imagine that going five weeks without a drink should be safe by now. However, the depression mood could be a systematic response to the lack of alcohol, and be part of the withdrawal.

Once he' s seen a gastroenterologist, further test maybe required. This is perfectly normal. Then, depending on the outcome of those tests, the next course of action shall be decided upon.

There are plenty of people who have cirrhosis and carry on leading normal lives. So it's not a death sentence. I don't want to go into too much detail at this time as too much information can be a bad thing, and at times like this we always tend to think the worst.

Just please try and remain calm and wait till you've seen the gastro doctor. Let us know how you get on.

[Beckley in reply to Hidden]

Thanks so much. I’m trying to remain positive for him. I’m hopeful that it’s not as bad as he thinks. However 10l was a lot of fluid to drain. His drinking wasn’t that bad. He never drank during the day, and sometimes he drank very little. But it was daily. He’s had no problem giving up alcohol either. He’s obsessing over his diet now, which is good. Lots of fruit, veg and protein. Everything low or no salt.

[Bootandall in reply to Beckley]

Hi Beckley, sorry, daily drinking of double the recommended amount (who recommends it? I've read this on this site before and don't understand it) is not that bad?! Please talk to the hospital about alcohol counseling. There is no safe amount, and the truth is, he could start drinking again in a few months or even longer without a solid plan in place to deal with cravings. Best case, his liver functions stabilize and return to a compensated state. By avoiding alcohol, taking all his medications, and eating small protein/carb meals every 3-4 hours, he is doing everything in his control to get there. Feelings of despair are perfectly normal, the uncertainty only adds to them. I have compensated cirrhosis and still have doubts about the future. Some days it feels like I've been run over by a truck. Rest and staying hydrated are very important. Best wishes to the both of you as you start this challenging journey.

[Beckley in reply to Bootandall]

Thanks for the reply. It’s great to know that there are others out there. It’s going to be a bumpy ride!

[Hidden in reply to Beckley]

Becky there are lots and lots of others out there - unfortunately ☹️. Best thing to do from my experience was to give up alcohol! I was way way too late but at least I gave my body a fighting chance for surviving the TP - which was inevitable because of my stupidity in not acting sooner.

Good luck to you both!

Miles

[Roy1955]

I know how he feels!

The initial diagnosis scared the crap out of me and depression set in.

Here I am 2 1/2 years later and I am LIVING with compensated cirrhosis.

He is at the start of a long journey but can hopefully recover if he follows the rules.

I am NOT cured and never will be, it's all about living with cirrhosis and stopping it getting worse.

If he can do that he can vastly improve and live into old age.

The danger period of giving up alcohol is the first 10 days.

He is well past that so now he has to fight those mental demons that say one or two wont hurt.

Believe me.

They wont just hurt, they might kill him!

[Beckley in reply to Roy1955]

Thanks Roy. Im pretty sure he has accepted not drinking ever again. He is very worried about his future now. He doesn’t think he has one and also can’t sleep. When he does he wakes up with nightmares. I’m scared for him. He has no energy and seems to be getting ascites again... so soon after the drain. Is that normal?

Can he have compensated cirrhosis with ascites? The letter we received from the hospital this morning said he was showing no signs of decompensated cirrhosis.

[mncold]

Hi Beckley,

I don't know if going over how much or little someone drank is worth worrying about since he is 5 weeks without and planning on not starting again - good for him!!

My husband was in liver & kidney failure in Nov 2015. We have no clue how much they drained while he was in the hospital, wasn't on our radar. He quit drinking while in the hospital after the doctors told him if he continued drinking he would be back in the hospital within the year and probably would not walk out. He still is not drinking.

His liver doctor, we see him every 6 months, is pleased that hubby continues to improve his blood work a tiny bit each visit - not leaps and bounds, but still improves. His liver doctor also told us that my husband now has as good an outlook as others for a good 20 or 30 years more - his mother is 94.

There are many people on this forum who have gone thru this and are still hanging in - so keep your spirits up [but remind your partner not to drink them down -I hope you don't mind the humor].

Best wishes to you both,

Mary

[matt137 in reply to mncold]

Hi Mary

That is a very good thing to hear for someone who also has cirrhosis from alcohol. I dont suffer any major symptoms as yet but I constantly worry about how much time I may, or may not have.

Would you mind if i asked your husbands age?

Best Regards

Matt

[mncold in reply to matt137]

Hi,

Husband is 71.

Mary

[Beckley]

UPDATE... Thanks everyone. We saw the doctor at the Acute Medical Unit today for a 1 week post ascites drainage follow up. Bloods show bilirubin down from 119 to 89. Leg Swelling has gone right down and abdomen swelling only shows a little bit of fluid. Platelets are still low at 30.

We have been referred to a gastroenterologist who we should see in 2-4 weeks. Been prescribed higher diuretic dose and laxatives in the interim. I’m feeling more hopeful about the outcome. Would love any feedback though as we are still in the dark until we can see the specialist. Still very much concerned and would welcome any advice.