newly diagnosed cirrhosis

I'm joining this in the hope of some support and advice for my beloved fiancé who has this month been diagnosed with cirrhosis, after years of ill health. He is 37. He has been alcoholic for 15 years, he didn't think he could cause this much damage as he 'only' ever drank 5% lager , seems he was very wrong! He has had repeated liver function tests come back fine so it has come as a shock. He has a history of electrolyte imbalances, which I guess could of been his liver all along. He hasn't drunk for two months and doesn't plan to ever drink again.

Yesterday we met the liver specialist, which was pretty horrendous. He was very stern, and told my fiancé he only has a 50% chance of being here next year. Are they that stern to frighten people into not drinking, or is he really at deaths door?? It's down to whether his liver can repair itself at all from what we could gather Apart from following a healthy diet, and being given various meds for symptoms, incl lactulose, he didn't really advise, we don't really know what else we can do? He has pretty bad ascites, and has been drained once, but seems to need it again. He can barely walk from swelling feet, and is exhausted. His appetite is nil, again I think from the fluid buildup. I know he needs to get positive to give himself a chance here, but how to be positive in this situation?

I would be very grateful for any advice , or just some hope here, we are both very scared and I just want to know of anything I can do to help him! Thanks, m

32 Replies

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  • You can work out a MELD score if you get his blood test results. Having ascites means he is pretty advanced, but alot do get some function back with abstinence.

  • Hi ralph2014

    It will be nice of you, if you can send a link or document on how to calculate MELD score.

    Regards

  • I should also add im very sorry to hear of your partners condition, it happens too often that people get into trouble with out knowing how dangerous alcohol can be

    MELD score

    reference.medscape.com/calc...

    another one is child-pugh

    mdcalc.com/child-pugh-score...

    be careful with the mg/l and umol, make sure you put the correct ones in, you may have to convert some.

    If you dont have the tests results you can just ask at the doctors.

  • Thankyou. Yes it's an awful thing, I feel like shouting it from the rooftops to all the people I see merrily drinking themselves stupid with no real understanding of consequences.

  • Hi, you and your fiance have my empathy; its horrendous the damage that alcohol can do. I would expect the specialists to be frank and honest . Firstly, as he has been told he only has a 50% chance of being here next year; has a liver transplant been discussed? Have you asked about the possibility of one? Ralph is correct in that some people (whose cause of cirrhosis is alcohol) ; provided they stop totally, no more damage will occur to the liver and many can go on to lead relatively normal lives and live long lives. However, it may be the case that your fiances is so advanced/that his liver really isn't functioning well at all/ that a transplant may be the only option.

    Did the specialist say that if he continues drinking he only has a 50% chance of living? You need to go back to the specialist and ask more questions and get answers. Now that your fiance is not drinking at all (which MUST continue) he is entitled for consideration of a transplant if needed. He needs to eat. No salt in the food though.

    Its not that the liver will repair itself cos it won't; but if the cause ( alcohol) is removed; things may improve and no more damage will be done.

    Get back to the specialist asap i say. Your fiance must come to terms with never drinking again though, not ever. If he happened to need a transplant at some stage; if he were found to be drinking still; he would be off the list permanently. Don't give up hope and good luck.

    You are welcome to message me personally if you would like.

  • Thanks for the replies. He didn't specifically say that it's only if he drinks again. Tbh we were in a little shock so didn't ask many questions. I guess they see a lot of people that do continue to drink , however my fiancé is dead set, so I feel pretty confident he won't.

    Liver transplant was mentioned, again this came as a shock to us so we didn't push for too many answers. The specialist mentioned he would have trouble putting my fiancés case across, as he was ill with an ulcer two years ago and then last year was having a drink again, albeit about a third of what he used to drink. I think yes he was concerned that if he started to feel better then he may drink, I guess the only way he can prove himself is through continued abstinence over time.

    In the meantime my concern is his lack of appetite, I think the ascites is not helping matters here, he's also coughing a lot and has diarrhoea .

    Like idiots, as we were told he has low sodium, we were piling the salt on his food! So have learnt now we need to restrict that, hopefully we can see some improvement. He did see a nutritionist but didn't seem to take in a lot of what she said so I may ask to see her again with me present. thanks again for the advice

  • Regarding the liver being unable to repair itself from cirrhosis: not strictly true! I was understandably shocked when told that my liver had regenerated 100% and I asked how on earth that could possibly happen because I didn't believe it, but apparently it happens more often than people think!

    Either that or I'm an immortal mutant or something... except I'm not and I've seen the changes myself on ultrasound :)

  • Really; ive never heard of that happening once you have cirrhosis; but im glad it did for you! So you have no problems at all; no scarring or anything? you are fully recovered from cirrhosis??

  • I was told that damage is permanent once you have cirrhosis; but that if you stop the cause (eg alcohol) then the liver will stabilise and things will improve re acites will go and a few other positives, that you must follow a good diet etc/ do some exercise ; but i was not aware of it being able to actually regenerate itself at such a stage of liver disease. This brings hope to many then!

  • It's very very unusual but not unheard of.

  • Slight enlargement which may just have been normal for me anyway (we know that I had some liver problems when I was 17, but thanks to my GP at the time not investigating we don't know what they were) and hardly any scarring at all. I've even been taken off the Spyro and pronounced cured :)

  • Ahh i see; re the ulcer; that was 2 years ago and he didn't know he had cirrhosis then; if it comes to it and your fiance sticks to no alcohol ; if his current hospital refuses him a transplant, that would be wrong and id then suggest you change consultants/hospital asap. Mmm, i see what you mean about being in shock; it can only be afterwards sometimes that you think of things you should have asked etc. Maybe go to the GP about his currently lack of appetite and the diarrhoea? he must try and eat though; when is the next appointment with specialist?

  • Sorry to hear your news. From my own experience, the side effects of steroid prednisolone, azathoiprine medications, and lack of meaningful dietary information, made the whole situation almost impossible to deal with.

    He's not eating, so it is vital specialist dietary support is requested a.s.a.p., to avoid a catabolic state, which is when the body starts feeding off muscle mass. Ensure drinks, available on prescription will help enormously. Lactulose is for keeping the bowels clear, and avoids encephalapothy - when toxins from body waste affect the brain, so it is very important to take it.

    I became a psychotic insomniac on prednisolone, and eventually got switched to Budenofalk, which calmed my suicidal ideation, and allowed me to sleep.

    The liver has a tremendous capacity to repair, and I do hope everything will be more positive over the coming months.

    Best wishes, MaggieK

  • You definitely want to avoid going into a catabolic state. Thanaks to this comment I now know what they were talking about when that word was mentioned concerning me - and I can testify that you don't want to be there if you can train the body into accepting some kind of nourishment again - even if it's "only" Fresubin/Ensure. Not only are you left incapable of any real movement, but it's painful.

  • You can always ask here for advice...

    1) The specialist wouldn't have been exaggerating for effect.

    2) He can't drink any more alcohol, any strength, ever again. It's that simple. He MUST do what it takes to make this happen. That part of his life is over. Time to move on.

    3) The ascites and low sodium indicates the liver is pretty badly damaged. If he stops drinking any chance it has to recover will be maximised. Show seriousness by joining AA, talking to stop drinking counsellors - anything it takes.

    4) Diet. Best diet is balanced, try and cook food yourselves and keep an eye on the salt. Lots of veg and salad basically with meat and fish but don't overdo anything. If you want to overdo anything make it the veg. Veg does not mean potatoes though, make sure there's lots of variety. Any food prepared by someone else, i.e. ready meals, prepared food, restaurant food must be suspect as they tend to add a lot of salt to these sorts of things. In any case 9/10 times you can make it better than you can buy it. You don't want to eliminate salt completely but you do want a clear idea of what you're consuming and you want to keep within the limit for people with asictes which from memory is half or less the usual limit. You're not born with a taste for salt so you can actually get used to having less salt. It takes about 3 - 4 weeks.

    5) Should the worst come to the worst and he needs a liver transplant, he'll be in the best position to get one. He won't get one if he can't or won't stop drinking. Post transplant prospects can be quite good.

    Hope that helps. Very best wishes.

  • Thanks so much for the replies! Margaret yes he is on hydrocositone steroids, which he is finding hard to deal with. Re the eating, I made him a banana yoghurt smoothie with added protein and that went down well and settled his stomach so I will continue with them and see if appetite improves. Next appointment is two weeks time, but I cant be there as out the country with work, his cousin is going to stay with him though. I feel awful I wont be there but will write a list of questions to remind him.

    . I did feel the specialist kind of wrote him off, for instance dismissive that he doesn't work , but our home life is that my job is well paid and demanding so he has kept the house and helped with my filing and research, he is not just some waster who was slobbing around guzzling booze! But in our state of shock I know we didn't get that across.

  • Hi

    I have been on the journey for three years while still suffering some symptoms and cannot be considered well my liver function has improved a lot.

    The you are an alcoholic stigma still never goes away, loosing the people you used to have a drink with is an expected result.

    Fight on as I had a similar diagnosis and have survived to annoy people another day. Chicken soup I put down as part of the improvement

    You can win this fight on!

  • Thanks, the chicken soup inspired me, its bubbling away now! We fully intend to fight- hopefully his energy will improve with food !

  • To try and give you some hope - 2 years ago I was very much in the same boat, very ill with no positive prognosis - 5 weeks in hospital. Turned to skin and bone with ascites, swollen legs, jaundice, etc, etc. A few weeks ago blood tests were normal and scan showed "effectively normal liver", ascites slowly went of own accord. I'm afraid I had to do a lot of research myself re. Diet, supplements, etc, but there are a lot of informative books (mostly American) out there. Definitely protein shakes help, eating a small amount every 2 hours and low salt diet, and a little exercise even if this seems impossible at present. Best Wishes A

  • First and most important,he needs to stop drinking. I was an alcoholic who faced what you are facing now. I had liver failure due to alcohol. It took me 18 months visiting a consultant and having many and frequent blood tests before I was fortunate to be placed on the transplant list. I believe this was to confirm that I had definitely stopped drinking. I then waited 18 months before I received the call 2 years ago Last Christmas eve. Again,during this time I received regular blood tests. There is no definite waiting list queue as there is a big shortage of donor livers and it depends whether the liver is compatible with your self (blood group etc). It also depends on the urgency of the situation for those on the list. My operation lasted for 10 hours and I was so ill afterwards that I was placed in an induced coma for 2 weeks. I feel very fortunate to be still alive. 2 years on and I am now a contributing member of society again. This would not have happened if I had not stopped drinking. I have now been in abstinence for 6 years and think myself lucky to have had the support of my family. I wish you both the very best of good fortune.

  • he must give up alcohol-try cutting down-lower alcohol or non-alcoholic alongside lower. has he thought of support groups? this is serious & the Dr would'nt have said this if it was not true.

    i was diagnosed with liver disease & only drink cider on weekends(2 pints)!

  • Thanks, hes two months dry and no intention of starting again but a support group may still be an idea if he ever struggles.

  • Hi I know how u feel I am at a loss at my husband is at the last stages of cirrohis of the liver throught tablets he was taking for his Artheritis.

    He asnt been drained now for 8 months which I find very strange as I know no why but the doctors say he's just stable what do they mean but that stable.

    Hes on lactulose if he dont give it him he just sleep then when I do give it him he get nasty .

    Anyway all I ask is someone to talk to from time to time.

    I really now how you feel u probably feel scared from time to time

    Just make sure he eats heathly no fry ups or anything with salt in .

    Also he stop drink they drinks as he said they was making him sick which doctors said was fine just drink milk which he does an that help alot I think he's got alot better life not been to doctors or hospital just go to leeds liver unit for check ups now

  • Thankyou bev, this seems a lovely forum so I hope you get all the support you need as well, it's so hard when it's someone you love so much.

  • Hi there.

    First of all, welcome to the group; I hope you will find everybody as friendly and supportive as I have since I joined.

    I hope that my story will help you both. I was taken into hospital last August after almost a week of vomiting blood (prior to admission I was seen twice by paramedics and also visited A&E, who sent me back home again). Like your fiance, my appetite was nil due to the ascites, and I was extremely skinny and weak. Wheelchair-bound, in fact - and that was if I even had the strength to get out of bed at all. I thought that I would never sit up unaided or leave my bedroom again - much less walk.

    I was given six months to live; I needed various drips and a blood transfusion and I was on the Medical High Dependancy Medical Unit for three days before being moved to a standard ward. I also had eight litres of ascites drained from my abdomen. It didn't seem like much considering how much was still there, but I was told that if they'd drained more my body would have gone into shock and I'd be back on the MDHU - so I wouldn't worry *too* much about the amount of fluid that your fiance still has.

    Before leaving hospital I was prescribed high calorie shakes (Fresubin) and the diuretic Spyronolactone. I was also placed on a restriction of 1 litre of fluid per day, with a 1 1/2 litre maximum. This was raised to 2 litres at my first consultation after leaving hospital because I was doing so well - and of course salt and alcohol were (and still are) out of the question.

    Your fiance should eventually find that the ascites comes off by itself, provided he sticks to his medication, diet plan and any fluid restrictions. I was advised to move on to my Fresubin drinks if I still felt I needed more fluid so that there wasn't more fluid present than my liver was able to process. He will also probably sleep a lot, and this is okay. Small snacks - little and often - will help to build his appetite as the ascites recedes. Believe me, it will.

    I'm supposed to be dead, but I fought back. First I fought for my upper body strength, which took some time to return, and then once I was able to push myself up and out of bed I started working on my legs and stomach. The wasted muscles have rebuilt and are actually better than ever - I'm physically as strong as the next healthy person and scans show that my liver has made a 100% turnaround - no sign that the cirrhosis was ever there symptom-wise, and only minimal scarring. Also, no ascites and I can drink all the tea in China now if I feel like it. As for my appetite? Back with reinforcements and my weight is back to what it ought to be.

    Wishing you both the very best, and sending positive vibes to your fiance. It will take a lot of willpower, determination and sheeer bloody-minded stubborness, but he can and WILL get there :)

  • Wow tarantulagirl that's amazing! He did need a wheelchair to get round the hospital. I know that what he needs is hope to give him strength to fight , when I get back from work we will read through all these replies together if hes not too tired. What a wonderful helpful forum this is.

    Chicken soup we can do! He loves it, I will make my own and put sneaky veg and protein powder in.

    he actually nearly died from his ulcer two years ago-a week in a coma and two months in ICU , he died twice and fought back, the doctors said they never saw anyone fight to live so hard. But his energy is so sapped from it all. He also has a massive incisional hernia from the previous surgery which we have been awaiting an op for the last 18 months which adds to his distress.

    He hasn't touched a drop in two months and is sworn off for life.

  • I am sorry to hear that about your partner but all is not lost. 2 years yesterday I took really ill with no warning or pains, I started to vomit blood in very large amounts,

    It turned out to be Varices they where banded, but then to cut a long story short I ended up in a induced coma. I miraculously recovered but was left with a number of conditions including Brain damage which affects my short term memory and also I have periods of confusion.

    My illness was down to alcohol abuse but I didn't think I drank that much I was told by my Consultant that I had been drinking for 30 years without giving my Liver a rest so I now have cirrhosis. I completely stopped drinking and I don't miss it one bit.

    I have a Ultrasound check up about every 6 months and was told that my Liver has recovered by 15%. My quality of life isn't what I would like it to be, but I am still alive. So don't despair there is hope. I wish you and your partner all the luck in the world

  • Thankyou, thanks to yours and others stories we're feeling much more hopeful now- some on this site have really been through the mill ! But come out the other side...

  • I found out my husband tend to fill up having cups of tea an fry ups which I used to say to him he shouldn't have then.

    Now he's stop having been drained in 8 Months now through just eating healthy an full milk an it's seems to have work we both have a better social life not going to hospital.

  • Well to tackle the appetite ( first things first) I have come up a great banana smoothie with lactulose, protein powder, milk and yoghurt, which is being sipped at regularly. And chucked out all salt in the house. Hopefully things will start to improve. thanks for all your help everyone.

  • make sure he takes the lactulose, this will keep any toxins out of bowels, toxins can cause confusion and forgetfullness, he must have really good balance diet, and keep positive, we are 5 years on from diagnosis and my husband still works, we have 6 monthly check, bloods taken and scans. He rides a bike rather than walking, which helps, he needs to be as active as possible, yes this is hard but managable, stopping alcohol means no more damage, but scarring can cause problems thence 6 monthly scans, we look forward to many years ahead even with 6 monthly checks. so try to think of that

  • Please just tell your fiancé to point blank stop drinking. This is the only way. I have just lost my dad on Tuesday and would not want anyone else to go through what we have just been through. I hope he can do it. Good luck x

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