Decompensated Liver/End stage Liver Di... - British Liver Trust

British Liver Trust

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Decompensated Liver/End stage Liver Disease

Diesel101 profile image
10 Replies

Hello. My husband detoxed in Nov this year paid privately as I could see that his health was fast deteriorating. He was drinking the large litre bottles of whisky and rum everyday and got to the point where he was vomiting, blood in urine, jaundice. On the day of discharge from the detox centre they arranged a gp apt. for him where the gp sent him straight to A&E. He has since been diagnosed with end stage liver disease and has been given a life expectancy of 3 months. He was discharged last week for palliative care in the community but came back into hospital 4 days later as he was vomiting and had black stools (diagnosed melena). He could barely eat when first admitted but now rarely eats and has had muscle weakness so is bedbound. He has again got the build of fluid around his abdomen which they wont drain due to risks of bleeding and we are being told he also has acute kidney injury. I have been reading of people sort of bouncing back after being diagnosed with decompensated liver/End stage disease. Is this possible for my husband? He doesn't seem like a 'dying' person (what do that look like?) just extremely weak and tired. He has shown signs of HE even before his detox (only know what these are through research) but not been diagnosed with this and this is horrible to witness on top of everything else. Docs first said he would be considered for transplant in 3 months, then 6 months and now are saying he has no chance to be eligible for a transplant. Have they given up on him? Any advice would be helpful.

10 Replies

How did the private detox miss the signs of his illness? Good luck, it sounds touch and go.

Diesel101 profile image
Diesel101 in reply to

Do you know what, I ask myself that all the time! My husband has been to detox twice before on the NHS and he said the care given was so much better than privately. I know this is a self inflicted illness but I feel they should have done something sooner rather than wait for him to be discharged and arrange and apt with his gp.

in reply to Diesel101

I know this is not a priority right now but at the very least, I would raise it with the private provider. I wish you well and take care of yourself.

in reply to Diesel101

Apologies, I should have added addiction is not self inflicted, it is an illness in my humble opinion.

in reply to

Totally agreed Mark. I dont agree fully with the need to be abstinent for 6 months prior to transplant assessment either. I get it and I dont. Alcoholism is a disease and as long as a person is showing to be doing their very best should be considered. If your going to flat out not bother to try and are committed to continuing to destroy yourself than ok I get it. Because if they are going to push the "you did it to yourself on purpose" idea on every alcoholic than they should be doing the same thing to people who have gotten to liver transplant status by habitually destroying their liver with poor eating habits and get them to sign a contract of life long shitty food abstinence as well. Sounds mean when its said about non alcoholics doesnt it? Im not trying to be mean but that would make the same logical sense wouldnt it? Many doctors fully agree that it is not fair to pick and choose which disease gets precident over another. I am inclined to oblige them.

AyrshireK profile image

In the UK a patient has to have a proven period of abstinence from alcohol for a minimum 6 months before they can be considered for transplant assessment (a contract of life long commitment to abstinence is also required when alcohol has been the cause of the liver ill health).

As well as being poorly enough to require transplant they also need to be well enough to undergo the procedure and lengthy period of recovery.

Sadly it sounds like your husbands abstinence and detox may possibly have come too late. Yes we have members who have recovered from severe decompensated states with intensive care treatment and have recovered enough to go on to have transplants but sadly we do also have members/loved ones and ex-members for whom recovery was impossible.

Your husband is showing all the classic signs of decompensated cirrhosis and also some of the red flag symptoms which are sadly life threatening. If the medical team can get on top of these symptoms and provide intensive treatment he could perhaps stagger back from the brink but sadly if they are saying his kidneys have suffered a major injury too and are already talking palliative care. I hate to be blunt but it sounds like he might not battle back and you may have to prepare yourself for the worst.

The British Liver Trust page on cirrhosis might give you clearer information than you've been getting from medics and might shed more light on the situation.

Not I suppose the answer you hoped for but it looks very touch and go sadly.

Best wishes, take care of yourself in all this, it is going to be a rocky ride.

Katie xx

Diesel101 profile image
Diesel101 in reply to AyrshireK

Thank you for your response .

Kkwason profile image

With ayurvedic or homeopathic treatment it might be possible but with alopathy it's not possible and it's a end stage try a good homeopathic or ayurvedic treatment that's all I can say . Allopathic treatment is useless at that stage it can only do relief in pain but can't cure . And wish he recover back

Diesel101 profile image

Thank you

Dizzie14 profile image

Hi Diesel101 I am in a similar position to you. I have complained to the hospital that we are just not given enough information or advice and have to come to amazing sites like this. Is there a timeline or each case is individual all we can do is love and look after them as we vowed to do when we married them. Take care x

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