Hi everyone. First post . Partner has Ald after yrs of alcohol abuse. Not drank since Dec. Very poorly . Just had 2nd astice drain. 26 litres. Previous 6 weeks ago was 14 litres. Can anyone advise the likely outcome please. I know it's not looking good. Thanks
Advanced liver disease. Outcomes - British Liver Trust
Advanced liver disease. Outcomes
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Doughty01
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What have the consultants told you? Have they said he will need a transplant?
Hi. His GP dropped out ALD last week. Seeing consultant this Friday.been having all sorts of tests for last 3 months. No good days at all. All bad days and hideous days. Can hardly get off the sofa. Can't get to the bedroom or bathroom due to house layout
OK so I think you'll need to ask these questions to the consultant, you're right about it not sounding too good because of the ascities. But there have been people on this forum who have come back from ascities with the right treatment and by looking after themselves.
Also an important marker is that he stopped drinking in December, if the outcome is that he'll need a transplant then potentially he'll have to wait until he's been dry for 6 months before he gets considered to be put forward for a transplant assessment. Even then there could be issues with his drinking as the assessment will include a psychological assessment.
Good Luck!
What is used to treat ascites Ive seen that words on some of my tests ? I know what they are but not what the normal treatment is.
Hi. Water tablets daily . No salt in diet. Reduced fluid intake. My partner is no more than 1.4 litres per day. Then a drain when the fluids build up. Every 3 weeks at the moment.
Thanks Doughty O1. I've not been given water tablets or ever told to cut back on,fluid intake. Was just told the 1st time -'don't drink - I assumed it meant alcohol , it was never clarified! My own doctor has said nothing,but in 3.5 years I've lost over 3 stone, not through dieting at,all, just through lack of appetite, so,yes I do nibble during the day and usually have some cereal with milk last thing in evening. I can cook a meal,perhaps 3 times a week depending on what I got a my tall old freezer bought here from UK let me down last year. I used to buy frozen veg and also freeze meat. Now I only have a small freezer at top of biggish fridge to keep what I can buy fresh ready for cooking more quickly.,I went off eggs for many many months,,but have started eating them again and prawns, as well as the occasional small steak and mushrooms.,I don't cook tomatoes now as they are acidic, but then so are oranges 
so you can see where I'm coming from now. Life used to be more normal, as I cooked for OH with bigger appetite to satisfy before relationship ended.
I'm certainly aware of Thyroid UK's stand on healthy eating, vitamins et al etc in,order to try and help control and regulate metabolism and the endocrine system.
I've looked previously at the linus Pauling institute lpi.oregonstate.edu where there was a very interesting article about Micronutrients and skin health. Given the state of my skin and muscle loss also it just looks like a flimsy piece of paper over not thick bone structure and I'm only 68.
I shouldn't hav gone like this in 3 years, last 18 mths have been worst for appearance. Nothing like my picture above,now! Only taken 3 yrs ago.
The research was some weeks ago though. I need to research because im not in my own culture and language, English,
I hope you can find something to help with your partner/friend, sooner rather than later though. Thinking of you both. Sambs xx
It's unlikely you have ascities if you are loosing weight. It's basically water retention around the stomach. When I was ill I was put on water tablets and lost about 2.5 stone in a week and a half.
Hi you need to bring it up with your gp and ask for fortisip drinks thats what my partner is on when you cant eat much you drink these drinks with meals or when you cant eat and ask for calegen its a weight supplement that you take three times a day its full of calories and along with the fortisip drinks really helped my partner put on weight your gp wont tell you they cant stand spending money by prescribed expensive medication
My partner came out of a twoand half month come due to liver failure she not drank any booze since she is now herself she put weight bk on eating better than before but she still has days when she cant moove and vomits constantly for a couple days then shee bk to herself her liver aint better but its no worse and thats the good thing when my partner gets like that again i was told to give her little sips of water and let her lay in bed its not good but he will get better having to clean them up aint ideal but id do anything cos she worth it he will get better just hang in there make sure he keeps taking his medication and no red meat for a while he will get through it with your support
Thank you. Will ask questions on Friday. Is there anything else I need to ask. He looks like he's dying at the moment. So weak. Hardly eats anything. I'm scared to check on him each morning. He is so weak with weight and muscle loss
Have you been told about diet? Really really important to eat loads of protein and eat often (every couple of hours) especially before bed. This will help keep the muscles from wasting (eggs, and meat are good).
If he's got ascities then you've probably been told to reduce liquid intake, is he on diuretics?
No salt, or as little as possible. But do try to keep him moving, sleeping all day will just contribute to his weakness. I know its hard but he has to force himself to stay fit.
You have to ask if they're considering transplant for him. How old is he?
He will be 50 in October. Had no intervention from anyone. Just left to get on with it. Has ensure drinks 2 a day and may have a sandwich if I can force him to. Has high blood pressure limits fluids and on 2 water tablets . No energy to do anything. Can't even stand for long . I try to get him to eat and move but he just gets angry with me. Trying to hide my stress from him but it's getting harder
Being 50 is a bonus as there seems to be a cut off for considerations for transplant but he's well within that. The blood pressure will be due to the cirrhosis.
From what you described he does sound very ill.
Pure speculation based on what you've said would be that he will need a transplant to survive this. This has to be a question on Friday, you might want to consider getting him in even earlier than that!
Now I know from experience that sometimes a shove in the right direction is required to get the consultant to put forward for a transplant assessment. Your husband is probably too ill to push for this and if you don't feel confident about pushing then I'd suggest you take someone else with you (a family member is probably best).
I had to push for a transplant although mine wasn't caused by alcohol so they couldn't refuse on the six months grounds. But the consultant didn't put me forward and more or less said I have months left. I pretty much demanded a transplant assessment (I took my partner and parents with me). The reason he didn't suggest it I will never know.
Ask about dietary advice? - my hubby was put onto a high protein/high carb eating plan - little and often is best but always some carbs and some protein with a large supper if he can manage it. The muscle loss is down to his liver now metabolising muscle for fuel so he needs to have protein to help slow that and carbohydrate for fuel. Doctor should be able to prescribe your partner some supplementary drinks such as FORTISIP or ENSURE (not the most pleasant of things to take but they are great supplements for stopping wastage especially when you have little to no appetite). Your hubby must eat or he will waste away and if he has no 'reserves' then transplant won't be possible.
Having a huge ascites won't help his appetite but if he can manage eggs, chicken soup, potatoes, rice pudding, porridge with milk then they'll all help. ALSO, cut out salt as much as possible.
Things do appear very serious for your partner at the moment but we have had people posting on here in the four years that I have been who have turned their lives around even with late stage symptoms.
All the best to you both,
Katie
Thanks Katie. Rarely eats anything. He has 2 ensure drinks a day . He is on water tablets reduced to 2 daily as his kidneys were becoming affected. He also suffers with high blood pressure and has 2 hernias.
Fortisip is a great protein drink. You should be able to get it on prescription.
He's not eating for probably diff reasons, but with massive ascites, you do stop. I only had soup for almost a year..ask for a supplement drink. They help. The yogurt drinks are good, and have the nutrients he will need. At least that's what they did with me,
Cheering you on!
My wife has cirrhosis and we have found that a total diet change has helped. We only eat organic fruit and vegetables from a farm and butchers meat and farm free range eggs. As already said salt is a no no as is processed meat. We have learnt a lot about the rubbish in supermarket food. Good luck on Friday
Thank you for your reply. I'm with you totally on diet. He just doesn't eat a lot at all. I'm just in from work and all he has managed today is a yoghurt. Trying to drum into him that he must eat is so hard. No appetite at all. No motivation to do anything . Stressed central
Hi, I'm Matt007's wife.
I totally sympathise with you. My appitete went big time too. I just didn't understand what was going on at all. I went through phases of eating so much fruit, salad, ice lollies and boiled sweets! They were like cravings. Have you asked your partner what he feels like eating. I have learnt that what I was craving was my body needing the ingredients I.e sugar, water, different textures, milk, melon.
I hope this makes sense. Matt was so good at working ways around what I felt like eating and balancing others things in between.
Although we changed my eating habits so much, It became so clear when I fortunatley had an appointment with a dietician.
Please try to stay as strong as you can. It has not been a year yet since my diagnosis and the symtoms are still coming and going and changing. I can't remember the last time I managed to walk to the bathroom pain free ( our bathroom is downstairs) I spend most of my day in bed, sometimes I walk our dog. I really can't do much without horrible, upsetting after effects. At first, I spent all day on sofa, but had to resort to my bed so I could get comfortable (for ay least a little while) because of ascites. Bless him, when Matt comes home, he sits with me in the bedroom all evening.
I take my strength from this site and my husband. I'm sure your partner doesn't mean to be angry. I am that way with Matt sometimes. It is awful for all involved.
Please let us know how Friday goes.
Wishing you both well and don't forget to look after yourself too.
🍀
Thank you for your kind words and honesty. Crisps , yoghurt and cornettos make up the bulk of his diet. Always buying lots of fresh fruit, vegs, juices etc and end up throwing them away. Gp said to us 3 months ago for Mark to eat all the stuff he shouldn't eat. Mcdonalds, choc,cream , full fat everything etc. I was amazed by that as it's all junk food and no real nutrients. I'm going to ask for a dietician on Friday. When he's worse than normal I sleep downstairs on the other sofa incase he needs me. He hasn't made it to the bedroom for just over 3 months. Now the bathroom is becoming an issue. I'm just about to apply for Pip as were struggling on 1 wage at the moment. Have you applied? Can I ask if your being assessed for a transplant ? Please don't feel you need to answer those questions as they are quite personal. I'm just really trying to get my head around everything. X
I understand about getting yr head around it all. Yes, I have applied for PIP and am waiting for their answer. No mention of transplant yet, I suppose that they are still watching how my Liver is getting on etc. I have end stage liver disease so I will try to cope with whatever comes my way.
You sound good for your partner, that's lovely that you sleep on sofa to keep watch. You are doing a great job.
Take care 🍀
Thank you. I'm just about to start the forms for pip. So much info to read up on I'm on google overload. No one medically seems in any rush . He called the dr out today. Mark thinks he has water infection so going a & e tmrw for blood test. Dr said he looks well! That's hilarious . Mark found it funny. I've got photos from holiday in November and compare them to how he is now there's no way he looks well. Doesn't help that he had 2 hernias that need operating on but can't be done at the moment.
Good luck with PIP.
Are the hernias due to the ascities? I actually got a hernia whilst I had ascities. You would not believe what that caused, I've never heard any of the other guys mention it so it might not be common.
My partner has ascites & his belly button has started to protrude. Could this be a small hernia ?
Hi. I hope this may be helpful. The social worker at the hospital where my partner was assessed told me in no circumstances to fill in the PIP's form by myself. He said to get appointment with CAB. Apparently the forms are quite complex & CAB know them inside out.
We don't have a Citizens Advice Bureau in our area since government cuts have made them less widespread. I completed all hubbies forms using the guides on Benefits & Work as help - when it came to our appeal I got great support off our local council Welfare Rights Advisor although these too are becoming rarer.
I had a terrible experience with CAB. I guess they can be hit and miss depending on the advisor. They were more concerned that I was contagious, then just told me which web sites to visit for the PIPS forms.
I don't think the PIPS forms are intended for diseases like cirrhosis, although there wouldn't be a chance in hell I could work or properly look after myself I could still walk 20 paces or whatever. I think its a really unfair system. Surely a fairer system would be to have a sign off by a reputable consultant? I mean it's so clear to me that PIPS isn't supposed to be fair it's just a good way how on paper the government look like they're supporting the most vulnerable but in reality only a fraction get help.
My hubby was advised not to fill up on fruit and veg, at his stage of malnurishment these arn't as important as keeping fuelled and trying to prevent the muscle loss. We were amazed when hubby was told to eat cakes, biscuits, bread, carbs plus all the proteins. Do ask to see a dietician! What hospital are you going to on Friday? All transplant units and other liver places should have dietary advice available.
My hubby gets PIP - we applied in 2013 and only got assessed the first time in May 2014 getting the decision about June or so and we then had to appeal it because they gave him zero points, at that point hubby was actually on the transplant list. We won at appeal and got enhanced daily living. Last year when we reapplied after the first award ended we successfully got enhanced daily living and basic rate mobility too. I can recommend the advice guides that are provided on the Benefits & Work website at:- benefitsandwork.co.uk/ There is a very small join up fee for carers/patients and the step by step guides provide all the key points you need for completing the paperwork (it is hard work).
Katie
Hi Katie
We're going to stafford hosp. Liver unit for us if we get referred will be queen Elizabeth in Birmingham. Just feel that there is no rush with any answers from medics. Just left to get on with it. Glad I have found this site. Have learnt more today from the folks on here than I gave from drs in the last 3 months. Does your hubby have asicites ? Has he had a transplant yet? I'm going to fill PIP forms in over next couple of days hopefully.
Lyn
No, my hubby has never had ascites, he had masses of varices and had one huge upper GI bleed - his portal hypertension also caused aneurysms in his splenic artery. He's had 42 varices banded since 2012. He was put on a fluid intake limit at diagnosis - never needed water tablets either. He does have some symptoms of hepatic encephalopathy and takes lactulose and rifaximin for this.
Hubby was listed for transplant in July 2014 but his blood test results improved (everyone says he's doing and looking well, though he feels awful - chronic fatigue) and he was delisted again after 10 months on the list. He continues to be monitored by a local consultant and also the transplant unit in Edinburgh & if he deteriorates again then hopefully he will be relisted.
He goes for his 6 monthly ultrasound tomorrow so we hope it doesn't show up any nasties.
Any questions you have just fire away, we are on a slightly different path (hubbies condition being auto-immune rather than alcohol induced). My hubby's liver is deemed to be 'compensated' at present but it is a constant monitoring exercise.
Katie
Good luck for tomorrow and hope it's very positive. 42? Wow that's a lot. Mark had camera 2 weeks ago and thankfully doesn't have any as of yet. He has abused alcohol for many years unfortunately. Binge drinking of a weekend and I mean proper binge. We've only been together 2 years so think the damage was done a while ago but no symptoms until dec. he hasn't touched a drop since and my god I will make sure he never does. We haven't had a true diagnosis yet. His Dr dropped out it was advanced liver disease at an appointment last week. She thought we had been told. No doubt his consultant will confirm on Friday.
What you are describing is "end stage Cirrhosis" and not just Cirrhosis. It is also known as "de compensated Cirrhosis"
With staying off alcohol he may get some Liver function back and may be able to get rid of some of the unpleasant symptoms he is currently experiencing , but the Cirrhosis will slowly start to spread over time. Some can live for years, even decades with Liver damage, its down to luck im afraid. Others degrade quite quickly and only last a few months or weeks.
Nobody can give you a time frame, but the situation is very bad, Cirrhosis doesn't get much worse than what you have described. Bleeding Varices are something you will need to know about and H.E. Both of these can end someone's life very quickly and these come with Cirrhosis most of the time.
Doughty01 in reply to
Thanks for the reply. Had camera last week and there are no varices what is HE pls ? No alcohol since this started so 3 months. We haven't seen any improvement just gradually going down hill. In pain today from the drain and he's called dr out whilst I was at work. Have to take him for blood test to a&e but he won't go tonight. He's so angry and frustrated all the time. Wish he would realise what he's doing
Doughty01 in reply to
Just looked up HE. Thank you. He has some confusion currently and mood swings. Will keep a look out for anymore signs. Thanks again. It is appreciated
You mentioned anger - this can also be a sign of hepatic encaphalopathy. Ask to be prescribed lactulose and Rifaxamin. How often is he having his bowels open ? Jim was pretty bad but was eventually listed and had a successful transplant three weeks ago. The only way to achieve this was good dietian input by the transplant team, ensuring very regular bowel movements ( 3 times / day ),diuretics and keeping mobile plus weekly sessions of alcohol sessions. All seems very daunting but the transplant team have to see a determination to be well enough for the surgery. Keep strong for you both and know its possible.
Hi there...your partners case sounds pretty much like mine.mi also had the ascites with the high liter drains. Mine got down to every ten days.
At some point, he'll be tested to see if he's a transplant candidate. Then you'll go on the list.
And yes..they are hard days. I was sober three and a half years when I got sick. Through medication, they will try and help him until the transplant.
Sorry things are so hard.
Good luck..
Thank you. I've had a dreadful day today. Just couldn't stop the tears. I've been very open with work and told them everything. They are very supportive. Just one chap in particular who can't stop winding me up. My manager had a word with him so hopefully he will back off before I lose it with him. I'm hoping that mark is a bit more positive tonight because I am on the edge. This being supportive is hard work and you do feel very alone at times. He's too poorly to realise the pressure I'm under. Trying to work which is a 60 mile commute. Stretching one wage and trying to do what I can for him is taking its toll. We will get there and tmrw is another day eh
Hi, and how awful; you really hear some sad stories on here and the hideousness of this disease; don't be fobbed off on Friday; ask if he needs a transplant; he has been off drink since december, so 4 months now; so maybe he might get considered if things are really bad; which is what its sounding like; yes, its important to eat; try to move around etc; somehow his strength must be built back up. I sort of know what you mean re 'left to get on with it' some in the medical profession may not have empathy as the cause is Alcohol; but in my view; its still a disease; he is off the booze now so that is really good; as people have said, i think everyone varies re how slow or quick the cirrhosis develops/ symptoms etc. Because its down to alcohol they will of course say he must never drink again, which is correct. Some people can do quite well once they stop/ after a certain period of time/ but again, it varies. Good luck on Friday and make sure you tell them he is not drinking/ tell them everything/ all the symptoms etc/ ask about diet/ exersize and be firm if you have to be; let us know how you get on; sending you both best wishes and lots of luck.
Thank you. It's going to be a long and bumpy ride. I'm ready for Friday I will be firm but fair. Mark will just want to get in and out as he has little patience. My list of questions is growing and I won't leave there without some answers . The support on here is amazing
Thank you. A truly vile disease that just drops on you. I am preparing his case for answers so everything crossed they just don't do the usual 10 minute chat and shove us out the door. Thank his gor this site it has given me so many answers ands that's support on its own.
hi-sorry to hear of your predicament. You've already had some excellent advice from people who know a lot about the condition and have been through it. I would say although its not looking good right now, your partner has some things in his favour-1-he's stopped drinking, that's key. 2. he has a support mechanism, i.e. you. also key. 3 relative youth. I think nutrition will be very important now-try and avoid salt/and too much fat. I dont think a yoghurt is going to get the job done however bad he feels.
small well balanced meals throughout the day plus nutrional drinks and a plain multi vitamin would help if he can stomach it.
Its going to be a long haul but vital to keep as chipper as possible-keep posting-loads of good advice here.
best of luck
K
Thank you. I've learnt so much off here in the last 2 days. I'm really grateful for all the advice and good wishes. Today we have advanced to a cornetto! Just been shopping so hopefully he may try and eat something later x
in reply to Doughty01
Good luck for For Friday, I expect you'll be seeing Dr Desai. I've always found him to be excellent.
Parking at the hospital can be awful I know, I am lucky in that I only live across the road and can walk there. I was diagnosed with cirrhosis in may last year and had my transplant this January within 2 weeks of being put on the transplant list. It's been a hard Road we've travelled since may but now my life is just starting to get back on track.
I'll be thinking of you both on Friday, please let us know how you get on.
Mike X
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