Worried....

[MrsT84]

My husband was diagnosed with cirrhosis back in June, and has done really well with going sober and getting his billirubin level down. He had a blip last month, and the jaundice has returned. He saw the Dr last week and again on Monday and had bloods taken both times, just had a call asking him to go back tomorrow for another blood test. I'm scared, is this a sign that things are getting much worse? On Monday his consultant told him that this is a sign that his liver cannot cope with alcohol, but didn't seem to think it was too late, and just stressed that he really needs to give up alcohol for good. No ascites, which he had last time, when he had a swollen tummy and feet.

[RodeoJoe]

I think your husband is playing a dangerous game. I think jaundice generally indicates that the liver is failing. That being the case he may well end up needing a transplant and if the consultant knows he was drinking in the knowledge that he had cirrhosis it is likely he will be turned down.

I know that they won't consider transplant unless you've been sober for six months anyway, but drinking when you're receiving treatment can open a big can of worms.

You've got a right to be worried. Perhaps AA or some counciling would help.

[MisterX]

Hi,

Very sorry to read this it must be horribly stressful for you. I'm not going to help you with that but I think at this moment you and he need total clarity.

When you say "blip" do you mean drinking?

On the assumption that's what you do mean then in light of symptoms his situation is pretty simple.....

It's REALLY serious.

The liver usually copes with assault in two ways;

i) By having a huge capacity for work - so even if a load of it is destroyed it can still perform its functions as there is a lot of it.

ii) By having the ability to repair and regenerate itself if the cause of damage is stopped.

When the liver is attacked - in this case with alcohol which is toxic to liver cells, the liver cells become inflamed. Under normal circumstances once the inflammation stops then the liver can repair the damage. IF the inflammation continues then eventually the damage become scar tissue. The early stages of scarring are called fibrosis - and these can also often be reversed. The later stages - where almost the whole liver is comprised of scar tissue is called cirrhosis and is usually not reversible past the very earliest stages.

Cirrhosis means that there is a lot less functioning liver tissue available to perform the liver's jobs.

There are two stages of cirrhosis.

a) Compensated - where the liver struggles along and manages to roughly perform its tasks

b) Decompensated - where the liver is unable to keep up. This is characterised by complications - in particular;

i) Jaundice (which is caused by lots of bilirubin in the blood showing in the skin).

ii) Ascites - Fluid retention around the belly

iii) Oedema - Fluid in the limbs - esp around feet and ankles

iv) Hepatic Encephalopathy - i.e. confusion because toxins are now going straight into the bloodstream instead of being eliminated by the liver.

v) Varices - where the flow of blood to the liver is impeded by dead liver cells and scarring resulting in pressure backing up and swelling veins in the oesophagus. These can burst out of sight and cause fatal bleeding.

So right now he's showing several signs of decompensated liver disease.

IF he STOPS drinking. NOW. TOTALLY and FOREVER. He may be lucky that there are enough liver cells available to him to roll back from decompensated liver disease to compensated liver disease. If he's compensated for long enough his liver MIGHT even recover a bit - it does happen sometimes.

If he stops drinking but too much liver tissue has already been lost or for some other reason things get worse he may need a liver transplant. The doctors will not authorise it for someone who can't stop drinking.

But.....

As you've described him - IF he drinks again (especially as a blip turned the clock back so fast) his situation is simple. The decompensated liver disease gets worse. It often gets worse very quickly. He'll be horribly sick, yellow, exhausted, confused and he'll suffer infections - amongst other things..... the liver performs more than 500 different functions and it affects everything. It's not a lovely peaceful way to go.

So there it is. There is no such thing as a blip in this situation. If he wants to stay alive he has to stop drinking, he has to do it yesterday and he needs to do it completely and forever. Liver cells don't understand or respond to excuses or justifications - "it's only one", "I'll eat at the same time", "there's alcohol in overripe fruit" etc. They just get poisoned and die - which is a problem if you don't have enough working in the first place and are on a knife edge.

Sorry if that's a bit abrupt (and long at the same time). I feel terribly for your situation but this is the reality. Hopefully he can embrace it and ensure he survives. I hope it doesn't come across as melodramatic - it's not - I'm being entirely factual.

Best of luck.

[MrsT84]

Yes, a blip with alcohol. Not in terms of going on a huge bender, I think that because his results had been so positive he took his eye off the ball. We were on holiday last month, my hubby has insisted that he doesn't want me to stop having an occasional drink because he can't, and unknown to me he had a few swigs of my drink here and there on holiday. Obviously I now know that I can't drink around him at the moment, even though he says it's not an issue. Because of the damage previously done to his liver it cannot process even those small amounts of alcohol. Last week the consultant said he is still positive that hubby can live a healthy life with his own liver as long as he doesn't go back to drinking...this is the final warning. He has also referred my husband to an alcohol advisory at the hospital, he saw her on Monday for the first time. Before then he had insisted that he doesn't need help, but I think he has realised that we can't do this alone....I don't always know the right thing to say.

The call from the hospital to go back today for another blood test has terrified me to be honest. Hubby says it means they are doing things properly, monitoring him and making sure that things aren't taking backward steps, but my instinct is to think that it means there's a problem.

After the initial appointment with the consultant, when he put the fear of God into us with worst case scenarios. things had been really positive until now. I suppose this is a long journey that we're on, and this is a setback, but I just hope we can move on from it. My husband is only 38, I'm 31, and we have so much living left to do together, I can't bear the thought that I'm going to lose him.

Sorry for rambling, I don't like to put this on my friends and family, so I'm turning to you guys.

[MisterX in reply to MrsT84]

Hi,

No this is definitely the right place to get support so don't worry about that.

I think I spelled it out in my post - he cannot drink. He'll either then muddle through his lfe or with any luck there'll be a degree of recovery. Do bear in mind that part of the reason cirrhosis is considered irreversible (past the earliest stages) is because the scarring changes the structure of the liver.

So he still needs to keep that initial fear in his mind. He can't drink again.

Keep positive but he must do everything he can. You're right to be concerned about the extra tests but in a sense it doesn't matter what they say today as the only possible treatment is to stop the alcohol.

[MrsT84 in reply to MisterX]

I suppose that's true, and this has proved to him that the Dr was not exaggerating; he absolutely cannot drink, end of. I'm also glad that he has taken the help offered to him by the hospital.

I have had my brave face on since this all started and the call yesterday made it slip. I'm trying to be strong for my husband's sake.

As I said, after the first appointment the consultant has been positive that my husband can live a relatively normal life as long as he quits the drink. He has told us that he has patients who were in the same condition as my husband, and now you wouldn't look at them twice as they are healthy, they just can't drink. My husband had done so well, his billibrubin was still higher than normal but going in the right direction, now we have took a huge step back. The consultant never lets us forget though, that if he goes back to drinking there will be no cure.

I'm just trying to rally myself now, whatever the tests today show we will deal with it together. This has been a huge setback but hopefully one we can overcome.

[MrsT84]

So hubby was called back as the last bloods, taken on Monday, showed low UREA levels, and they were concerned that this can cause heart issues, a murmur I think. He had an ECG and that has come back fine, they took more bloods and he is back on Monday to see the alcohol advisory person. The consultant has his clinic on Monday, so I presume he will call my hubby in if anything needs addressing immediately. The Dr he saw today has told him to make sure he eats plenty, if he has no appetite by Monday they may give him food supplements to build him up.

This is surely enough to make sure there are no more swigs or sips of alcohol along the way now, it has proved that total abstinence is required.

[MisterX in reply to MrsT84]

Well that at least is positive in that it's not directly from the liver condition - although do be aware that high levels of bilirubin in the bloodstream do damage the kidneys over time so it's possibly not entirely unrelated (if it's a kidney issue).

That said it may be a lucky escape.

If you don't mind a suggestion, get your husband to read the various threads here - it really is important that he understand not only what he needs to do but why he needs to do it. It's really really easy to make excuses or turn a blind eye - you only have to do it for the time it takes to take a swig or down a shot - and then you can think feeling bad about it afterwards will be sufficient or you'll hate yourself. Either way you'll have had the drink and it's too late.

He doesn't have any leeway - It's clear from the circumstances that he's right on the edge of the cliff.

Anyway, very best of luck to you both. Hopefully he can find his inner strength.

[briccolone]

I think Mr X has responded with great clarity-having had liver issues myself due to excess drinking I think you know what the answer is... If your husband stops drinking-he has a chance. If he doesn't, he doesnt. Sorry to be blunt. It's not easy but actually when you consider the alternative it may focus the mind. I'm 60 now and sorry you're having to go through this at such a young age.

Don't despair though-you'll get excellent help and advice on this site.

Best

[MrsT84]

Thanks for the support guys, it really does help.

My husband's consultant has been open and honest, and told him this will kill him if he keeps drinking. The alcohol advisory woman has told him in detail what would happen, that it wouldn't be a peaceful way to go.

It's frustrating that my husband doesn't seem to understand what he has going for him; he is from a lovely family, we both work for his parents and he stands to take over the company, my family are so supportive of us both, we have friends who care...we both have good, well paid jobs, a nice home, he has a brand new company car....from the outside looking in he has everything going for him. So when he feels sorry for himself I do get annoyed.

We had a 'heated discussion' earlier and I said that he doesn't seem to care if he lives or dies....he replied that if he didn't care he wouldn't be going to all the appointments, and taking the help he has been offered, that he's doing it because he wants to live. That has to count for something, I've told him he has a simple choice; alcohol or life. I am blunt sometimes, maybe too blunt, but this isn't a time to pussyfoot about in case I upset him.

[Bolly]

Its possible with all these external positive things going for him that you describe above, that there are some internal demons that he either cannot verbalise or perhaps doesnt fully understand. If he has reached this stage and still relies on alcohol, perhaps some counselling or therapy to try and understand why he has this relationship with drink is also needed. It doesnt sound like its a simple case of him feeling 'sorry for himself', it sounds like an addiction to a need for alcohol as a crutch/support.

[MrsT84]

I know, I don't mean to sound harsh. It's just frustrating when I love him so bloody much. We have gone through some hard times....long story short; I was previously married to his friend who committed suicide eight years ago, it wasn't a good relationship, my first husband was abusive and took cocaine. In the aftermath me and my husband helped each other and fell in love, we went through a lot to be together, we lost friends by getting together, and throughout it all we confided in each other. I don't know if alcohol became a crutch then, in all honesty I have drank too much at times too, but not to the same extent. I wish he could open up to me now like he did then, I think he sees it as protecting me by not telling me things. I can handle anything, any bad news, but I can't handle being lied to, my first husband did that way too much.

Sorry if I'm wittering on, seeing it wrote down my life seems like a soap. But I know we can be really happy together, we just need to get past this, we've been through so much already and survived, because we love each other.

He has started speaking with an alcohol advisory this week, so I'm hoping she will help him.

[briccolone]

could be as Bolly suggests that he's feeling so bad at the moment that drinking a bit more won't make it worse-I can assure you that it will. Just try one day at a time until it gets to a week and then each week until it gets to a month etc. If he starts to feel better them maybe he'll start to see light at the end of the tunnel. Sounds easy I know-it isn't but can be done with motivation.

Keep us posted and good luck

[dhazel]

I have been reading all these comments. This was my partner about 6 years ago, he carried on drinking, nothing can be done for him now. You say he doesn't care whether he lives or dies, but the liver failure just doesn't kill you quickly. I've had years of it now, it's a terrible slow way to die, and I'm watching him. The confusion is the worst, he won't be able to talk or when he does its all confused, this is the HE, his ascites and oedema make it difficult for him to walk and talk, so he is housebound. I have had to take time off work to look after him, attend to all his needs, helping with going to the toilet and cleaning up after him. I never wanted to be a carer but have no choice and he needs someone there all the time, so I am beginning to resent him and get short with him, because he doesn't know what he's doing. I am the main wage earner so the financial side is very worrying. You tell him to stop drinking because does he really want you to be cleaning up his mess and become housebound. Your life will become a living hell so tell him alcholics just don't drop dead, that would be a good end, it's too easy.

I am sorry for this negativity but I would not wish this on anyone.

[MrsT84]

He assures me he does care, and I saw some passion in him when he told me he does, that gives me hope. The alcohol liaison nurse has explained that people who die from this don't just go to sleep and not wake up.

He went to the hospital for a blood test yesterday and his billirubin is starting to come down.

In all honesty I think that this episode has scared him. Since June he had been improving with every blood test, and I think he'd started to take for granted that he'll get better....this has proved he can't, and that any alcohol will set him back massively, no matter if it is a swig here and a sip there...it all counts and it will all kill him if he continues. So, we learn from it and we move on together.

His itching is driving him crazy at the moment, it prompted him to say that he'll never let himself be like this again, and I believe him. I have to, we aren't far into this journey and I know It's a long one.

dhazel, I really feel for you. There have been times when I felt like screaming, and want people to realise that I'm suffering too, scared I'm losing my husband. But then I start thinking that I'm selfish to feel like that, that he's the ill one. I hope you have friends/family to support you, as you support your husband.

[pear-shaped]

Dear Mrs T,

You are so right - it is the partners that suffer the most. The strength of your bond and your love will give you both the strength to fight this through...

Cyber hugs, prayers and lots of support coming your way...

Pear.

[MrsT84 in reply to pear-shaped]

Thanks pear-shaped...I have just read through your posts, you have really been through it haven't you? Much love to you and your husband.

I've spent the last few months flitting from anger, fear, upset and a whole load of other emotions. I'm grateful we have such a strong relationship as I think this could tear people apart. I know it's cliche but my husband is my best friend, we've been through so much together, so we'll get through this.

[pear-shaped]

Hello,

This is exactly how I feel... Like many on this site we have been together for a long time and yes, he's my best friend also... I missed having him with all the HE and previous to that everything was just robbing me of him.

You fight for him Hun - the advantage is that you can see everything clearer than him so you fight the disease and for him to get all the support he deserves...

Sending you plenty of hugs,

Pear