I am new here. My 55 year old brother has been diagnosed with alcoholic liver failure and we are at our wits end. He has been an inpatient for 10 days and the communication has been awful. Since he was admitted his condition has gone downhill. He is being tibe fed, on antibiotics, having fluid drained from his abdomen and is very confused and agitated. We can’t seem to get any answers as to the treatment plan and the nurses don’t seem able to answer the questions or find anyone that can. He’s hallucinating and is distressed.
My biggest concern is where thsi will all end. He lived on his own but I cant see that happening in the future (he is now incontinent and can’t walk). His only relatives are me and my 85 year old mother. He couldn’t live with her as she has carers herself. Does anyone know how they deal with this if the situation might go on a long time - or if it is survivable?
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Sillybilly77
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Hi Sillybilly, at the moment the medical staff will be doing all they can just to get him stabilized. As you've said at this stage he's in liver failure or more correctly he has signs and symptoms of decompensated cirrhosis or very acute alcohol related liver liver disease.
The fluid build up is ascites and then you've got the confusion issues which may be because he's fighting an infection or indeed could be because he has lots of toxins swimming about his blood stream affecting his brain (in cirrhosis this is known as hepatic encephalopathy).
Has he given the hospital the go ahead to actually talk with you because unless he has they have no legal right to share his private personal information even though you are close family. If he has given permission you should try and get to speak with a doctor on the ward to see if the hospital has any sort of liver department - not all have and it'll be a gastroenterologist who takes the lead. [When my hubby/fiance as he was then - was initially an inpatient I felt totally left in the dark and I wrote a letter to hospital staff basically begging them to let me in on information and the consultant gave me a wee time slot to pop in and see him to discuss what was going on].
At the moment your brother is obviously very poorly so concentrate on helping him to get stable, hopefully they are also helping him to detox whilst he's in hospital. If he gets sober in hospital it will be absolutely critical that he remains so (for life) or he'll very quickly go down hill again and may not get another chance - transplant would only become an option if he had proven alcohol abstinence and compliance with some sort of alcohol support network.
Before he leaves hospital you should seek to speak with adult social work department as regards his care going forwards. If there is no one to care for him at home and he can't care for himself then something will need to be put in place to assist him.
I hope you get some answers from hospital soon and some clearer picture of what is going on. The BLT has some excellent guidance on ARLD and also on cirrhosis which might give you some idea as to signs and symptoms of what's what and let you get some guidance as to questions to ask etc.
Thank you so much for this - i’m honestly just so grateful for any info.
He’s at the QE in Birmingham so huge hospital. However there are no beds on the gastro ward so he’s been stuck on an assessment ward for 2 weeks which I think makes it harder as they are not used to dealing with this.
He has been given detox drugs so has not had alcohol or cigarettes since then. There os no longer infection and one thing they did say was the confusion was linked to liver toxins. I find the confusion the most stressful as he’s just so agitated.
I’d love to say I think he would be comitted to not drinking in the future but I honestly can’t see it. I can’t see a point at the moment where he would be well.
The confusion due to toxins is called Hepatic Encephalopathy [ britishlivertrust.org.uk/in... ] and there are treatments for it - lactulose, Rifaximin and potentially he may need enemas if he's severely constipated. QEB is one of the top liver hospitals in Britain - hopefully they ARE communicating with liver team even though he currently isn't on the liver ward.
First off, Huge sympathies for the situation you find yourself in.
Some positives - As Katie points out he is in the care of one of our top liver hospitals. He may not be on the right ward yet but have faith that the liver team have kicked into action. They really do deal with this everyday and whilst very shocking to you it is not Unfortunately unusual for severe disorientation and agitation due to the toxin build up. They will be working really hard just to stabilise him at the moment.
It is very early days with his admission so stick with it and make sure you are kept more and more in the loop as his stay extends (once you have permission).
Good luck, just keep asking questions of them and remembering they want the best outcome for him too.
In addition to the suggestions from members of the forum we also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
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Hi Sillybilly, pick up the phone and phone the Liver Nurses as they will be able to help you I am sure. My heart goes out to you and your mother, seek help and be strong for your brother.
If your brother completely STOPS drinking alcohol, eats a healthy diet (low sodium especially) doesn’t smoke or do drugs and does what his Drs tell him yes ! There is hope ! I was diagnosed 6/13/2019 in hospital for 16 days, hallucinations, I had severe malnutrition, severe muscle wasting ascities (that’s the fluid which is drained from your abdomen. One time I had 11 liters drained. I was to weak to pull myself up let alone sit up without help in bed. I was 95 pounds all skinny but Iooked 9 months pregnant. I had full blown diarrhea 8 times a day. The list goes on. Today I’m 130 pounds and my liver has regenerated . I was diagnosed with alcohol induced decompensated cirrhosis back on 6/13/2019. I haven’t touched a drop since.
I went years trying to quit, cut down, AA , seeing “shrinks” trying to educate myself thinking if I understood why I drank I could stop. I COULD NIT STOP.
It took hitting rock bottom and literally close to death to stop. I drank for 30 plus years and it progressed thru the years till I needed the drink to function and to work, it became medicine at that point. Long story. But I am doing really well today! And my Drs comments “I look healthy “ This is not to brag! But it can be done . I know the Hell of being an alcoholic but if your brother wants to live he has to never drink again, his liver can’t handle it. It is very, very tough and everyone is different, for myself the day I was diagnosed drinking was No longer an option…..
I so wish wish your brother well, I know exactly how he feels right now. The depression was Hell as well.
I am sending prayers of healing to your brother, You…and your Mother, it is very difficult on you and your Mom.
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