End stage liver disease

[JakeG]

I have posted infrequently but read and follow the posts regularly. I can see it’s a highly supportive community. My husband has end stage liver disease diagnosed a while back. He has recently relapsed and is in hospital going through a controlled detox. We are separated and live at opposite ends of the country but I do what I can to support him. However in spite of what I have read I still don’t know exactly what end stage means. He has a cocktail of drugs to take on a daily basis to help with the confusion he suffers from amongst other things. He has spells of sobriety but they don’t last long. I am worried that he will lose the tenancy on his flat as he is not coping at all. The social services have been amazing, he sees an addiction specialist every two weeks and attends a club for recovering alcoholics. Sorry i’ve rambled on! Simply want to know what end stage actually means. Thanks in advance.

[AyrshireK]

Hello JakeG, end stage liver disease is often the name given to cirrhosis of the liver as it is the last stage of fibrosis on the metavir scale [ a descriptor of liver damage which scores from 1 (normal with no fibrosis) through differing levels of fibrosis to stage 4 / end stage or cirrhosis].

Describing it as end stage always seems very damning 'cos it implies the end is near. However, that isn't necessarily the case. Since the description of a cirrhotic liver can also have it being 'compensated' where although severely damaged it is coping to perform a great many of its 500 different jobs or 'decompensated' which is a more worriesome stage where the cirrhotic liver is now struggling - sometimes seriously and isn't coping with even it's most important functions. This is when more serious symptoms can arise and potentially the patient can become very, very poorly or worse still.

To learn more about cirrhosis and to educate yourself on which symptoms are the most serious have a look at the British Liver Trust page:- britishlivertrust.org.uk/li...

It sounds like you loved one is suffering effects of hepatic encephalopathy which is were the liver isn't removing toxins very well and they build up in the blood stream and brain causing the types of confusion episodes he is suffering (it's quite common to get treated with Rifaximin and Lactulose to help with this condition). There is also the possibility he has issues with the detox or long term alcohol misuse which can affect brain tissue too & might lead to the prescription of other drugs.

It's very sad that alcohol has him so much in its grip because his only real hope of better health is to kick the booze. At the present time if a transplant were deemed to be required he wouldn't even be considered for asssessment as the UK system demands at least a 6 month period of proven abstinence together with a willingness to commit to support for life long abstinence. If he can't kick the booze it's unlikely he will see much recovery and perhaps he would go down the slippery slope to full on liver failure.

There is yet hope but he does have to commit to an alcohol free life going forward. We have posters here who have hit rock bottom through alcohol abuse, tackled it and gone on to successful transplants and life renewed. We sadly have also been bystanders when loved ones have posted about the passing of family members due to this awful disease.

Well done you on standing by someone in such sad circumstances, I hope he can accept the help and support and turn this thing round for both of you.

Wishing you the very best of luck,

Katie

[JakeG in reply to AyrshireK]

Katie, thank you so much for your detailed reply and taking time to give me some facts. Charlie definitely has HE and is on the drugs you mention. Sadly I don’t think he is ever going to have an alcohol free life but my aim is to ensure he has the best life he can possibly have given his condition. I know he has cirrhosis but I don’t know to what degree. I’ve just spoken to him, he is in hospital but has no idea why. I’ve explained about the controlled detox but he can’t retain the information. I’ve had 5 callls and 4 voicemails in the space of 20 minutes all saying the same thing. It’s so sad. On the bright side (I am a glass is half full person), I know he will be getting the best care possible. He has a lovely consultant and the care he is getting is second to none. Thanks again Katie.

[Hidden]

I can totally concur with what Katie has said.

I happen to be one of those people she speaks of. My story is a pretty long one, but can be read here on the BLT's "Your Story's" section or just click on the link: britishlivertrust.org.uk/st...

You never have to say sorry here if you feel your rambling-on A lot of people on here have been through this, so you are in good company, and not alone. When my medical problems began with variceal bleeding, I'd never heard of this condition before, and along with Ascites and Hepatic Encephalopathy

I, like so many other people, was totally naive to the medical consequences of my drinking. In order for me to stop drinking, I needed to find out why I drank in the first place.

I could go weeks without having a drink, but the would go on a 3 - 4 day bender. At that time I had never psychoanalysed my behaviour before, but came to realise that, my particular behaviour was due to me having depression. Unbeknown to me at the time, I was self-medicating on alcohol in an futile attempt to lift the gloom. JakeG, you'd be surprised just how common this is. People drink alcohol because their depressed, and because alcohol is it's self a depressant, a vicious cycle can start as more alcohol is needed.

In an attempt to try and get the message across, and make people aware of the dangerous of alcohol abuse. I have set up my website at: taep.eu in a strange sort of way, I feel I owe my liver donor to at least try and help others.

I hope you find some of this of interest. I can't help feeling that if your ex can have spells of sobriety then there maybe something that's driving his need for alcohol, maybe there's a patten there that no-ones spotted.

Please kindly keep us updated on how things are going. And Good luck.

Regards

Richard.

[JakeG in reply to Hidden]

Thanks Richard, i’ll check out your website and your story on the BLT site too. Your reply has definitely helped, thank you. I think you’re right about depression. I’ve known Charlie for years and i’ve never understood what drives him to drink. Glad things are going well for you and I agree it’s good to give something back. My best friend is a recovering alcoholic, she had been been sober for 11 years now and she now counsels families who are affected by a family member’s drinking.

[Hidden in reply to JakeG]

Thanks for you quick reply. Sadly, when it comes to treatment I personally believe that you have to treat the cause as well as the symptom. I live is Stoke-on-Trent and there is a drug and alcohol support service here in the city, as well a MIND. (mental health support). The alcohol support group never seem to manage to get down to the cause of a persons alcohol problem. If they did, they could work with the likes of MIND and work together and come up with a practical course of treatment, thus helping with depression and the alcohol together.

I really do think that a different approach is needed with our society. I personally hate the word "Alcoholic" as it just stigmatises a person, there treated as the lowest of the low. I wino, a drunk, a no-hoper. I tell people, that that behind that person sleeping rough on the street with a bottle booze for company has a story to tell. But no one cares or want's to listen. For all we know, they could have served in the services and now suffer from post traumatic stress disorder.

I could go on, but this really isn't the forum to talk of such things, please forgive me for getting carried away, I guess it's just something I now feel very passionate about. It's good that your friend is able to help others. A person that's had personal experience of alcohol abuse, is more likely be listened to by others.

I wish both you and Charlie well.

[yellowbutterflies]

Jake, I am so sorry! I learned 7 years ago that I had 4th stg. non-acholic liver cirrhosis and I am doing alright for now. The dr. told me he did not know if I had 5 or 10 yrs left. I told him he could tell me anything he wanted, but I was not going anywhere until God calls me and I'm last on His list. The dr. looked at me weird and I ask him if he wanted to know why. He nodded his head and I told him that He doesn't want me up there talking His ear off, He wants me down here doing it to others! We had a laugh over that!

I just want you to know u should never give up...only God knows when it's your time. I don't have many problems and go to the dr. every 3 months for the rest of my life. I have lost 34 lbs. so far, but trying to eat a lot of sugar items to gain some of it back. Got down to 101lbs He gives me an ultrasound 2x per year. I hope you have a good dr. Oh by the way, I was 68 when diagnosed and I just celebrated my 75th on October 9th!!!!

Please don't give up and make sure you have a good doctor!! Always have a sense of humor and you will find yourself laughing which is the best medicine anyone can give you! You will be in my prayers!