HELP!!!

Hi there

My Dad has cirrhosis of the liver due to abusing alcohol for years, this was finally diagnosed 8 months ago, as he finally went to see his GP, very stubborn man!!

He is on a few tablets now and gets bloods done regular, the thing is, nothing much more is getting done! He is skin and bones can hardly walk and is half the man he used to be. I know he recently got veins in his gullet tightened off to stop internal bleeding but this is all I'm aware of as he doesn't wish to burden me with details. I was just wandering, is the tiredness , confusion, muscle loss and exhaustion etc just something he has to put up with until he possibly gets considered for transplantation or the liver recovers itself (which doesn't look likely),? I just feel he is lying or sitting there every day wasting away, is this everyone's experience of recovery?

This is my first post and would love any help or advice, anything would be great, I'm at my wits end!!

Paul - a concerned son! Thank you all so much x

48 Replies

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  • He must stop alcohol , first thing , you won't get on the list until you prove to the specialist you won't drink again ! It's hard I no but he must do everything they say , go with him to docs or hospital and get advised about your dad good luck Paul

    Bob

  • Thanks Bob

    He has been totally off alcohol since first seeing his GP over 8 months ago, so he is doing very well! Fingers crossed

    Thanks for the reply

    Paul

  • its great that your dad has a wonderful member of the family who care and support him . that must be a real blessing to him. i hope he is off the alcohol now as at least he wont be making things worse. all the best to you both. xoxo

  • Thanks for those kind words, hopefully get better soon!

    Thank you again x

  • Oh dear; has he seen a specialist yet? and is he still drinking?? Try to get him referred to a Heptologist asap. If he is prepared to stop drinking totally; then he should be treated accordingly and properly, given all the tests etc; even if he is still drinking he will be treated to a certain extent......but he must not drink or there will be no recovery; it appears as though your dad is at a late stage. I didnt fully realise or perhaps didnt comprehend....that in all likelihood.....if he drinks after being seen by the specialist who will lay it on the line....that he would never be offered a liver transplant if this became necessary...even if he hasnt drunk anything for years post seeing the specialist and then has a relapse .ill be researching this more more but really i think the NHS can do what they want in such cases re alcohol; i understand you are only given that one chance. You may well find that not much help is offered by Hospitals/ well/ in serious things like the bleeding things will get done but there is not much empathy around for alcoholics in the NHS unfortunately and whilst i class it as a disease, some people do not........but main thing/ urgent thing/ NO DRINKING /get him to a detox if needed/ and get urgent appt with specialist. Please let us know the outcome and very best of wishes and luck to you both. xx

  • Oh, i see he has been totally off alcohol; well done to him!

  • Yeah , he has been off it completely since he first got told, he knows it's not worth it!

    Hopefully they won't hold it against him too much!

  • depending on where you live..he needs to be sober at least six months..but he also needs to show that he is getting support, AA would be best, to be honest, and also that he does not show signs of ever wanting to drink again. They don't take this lightly.

    I myself am a grateful liver recipient and am in recovery for 7 years plus a few 24 hours.

    He does sound like he is getting worse..I'm so sorry. I was sober 3.5 years before I got sick. I was in shock.

    Confusion is often from HE, fluid buildup causing the brain to act like it can have dementia. Exhaustion is also normal. Having low energy, sleeping a lot. The liver is the organ that determines where the food resources go as far as energy is concerned. A healthy diet, with as many calories as possible is important. Low LOW low sodium is considered a must.

    Varacies also is one of the main things that show his liver is decompensated. Is he on the list? Do you happen to know his MELD score?

    Has he been in for assessment for transplantation yet?

    Also, the hospital where he is being seen at, do they offer any type of family support? Or maybe his Specialist?

    Im glad you found us..I hope we can be of some support to you.

    Please know you are not alone and there are many wonderful members on here that are family members, like yourself.

    NHS is really great, I've found at offering support to recovering alcoholics and helping them get the transplants they need. I'm an example of one of those folks! :) And there are others on here!

    My hospital is Addenbrookes in Cambridge. They do a lot of research there also. Are you near a hospital?

    Do you see your dad often? Can you take him to an appointment or two to find out whats going on? Can you say to him, "Dad, this is really affecting my life, I know you don't want to burden me, but not knowing is really hurting me. Your my dad, and I need to be there for you." That might work? Also, take him out for lunch, make him

    For you yourself, you may want to try an Alanon meeting. There will be people there who will completely understand and have similar scenarios..I always recommend at least two, in case you don't like the first one! :)

    There's a Free App called 'Steps Away' that you can get that will show you where every 12 step meeting is in your area..days and times. Some people, especially when they get older think AA is a bunch of hooey..but I have seen plenty of older men and women sitting together laughing and smiling..surviving this horrible disease we have. He and you might make some lifelong friends at these programs..just a thought! :)

    Cheering you on, and forgive long post!

  • Hiya

    Sorry for the late reply, im just so overwhelmed with the response i have got!! Firstly, he no longer is getting seen at the local hospital, he is awaiting for an appointment through from Edinburgh Royal and think they will be dealing with him from now on. So at this point in time he is getting bloods done regular, he got the veins thing done in his gullet and is due back there again in 2 weeks and is awaiting to hear from Edinburgh, but he looks, feels and sounds terrible at present and it is difficult to think nothing else can give him a bit more energy or life!

    His appetite is fantastic, he has been off drink for months now, as i mentioned before, but is still very ill. AAAARRRGGGHHHH

    Thankyou so much for your help and to everybody if your are reading this, i am reading everyones posts as they come through my phones email but just havent had time to reply to everyone, but again thankyou for the support!!!

    Paul xxxx

  • Paul, your dad will get good support from the Liver Unit in Edinburgh and once seen they will determine what happens next ...in the meantime just do what your doing and support your dad ...a healthy diet is a must 😊

  • Susieanna, I must disagree with you strongly. My liver failure was totally due to long-term misuse of alcohol. I was NEVER for one moment made to feel it was "my fault " after I was able to demonstrate by attending counselling sessions, that I had stopped drinking and wouldn't begin again post transplant, I was listed. I then waited for two weeks on the list before being given a new liver in March of this year. I was almost exactly as Paul describes his father. Lucy my partner tells me she didn't think I was going to make it. So, Paul, from what you say there is definitely a positive way forward.

  • After reading your post there, it has giving me a bit of hope!

    I just feel, He isn't getting any better even after 8 months off it,he is getting referred to Edinburgh Royal Infirmary for I can only assume the start of the assessment to find out if he requires or eligible for transplantation but in the mean time he is like an 90yr old man!!!! He is only 60!

  • Sadly, it what happens to you; but im glad he is getting referred and something seems like it is being done re transplant assessment.

  • Hi Paul, my husband was in a similar situation and stopped drinking 2 1/2 years ago. For the first year he could hardly walk. He has hep c too. The first year was hard but the main thing is to prevent any further damage. He will be very tired. My thoughts are with you. Get a liver specialist to assist with questions. It is a daunting time but you are not alone here.

  • I am 62 and I can assure you I was suffering badly from my failed liver. The confusion you describe could well be Hepatic Encephalopathy. I had 8 hospital admissions in one year mainly due to Hepatic encephalopathy. My acute illness began in March 2015 with spontaneous bacterial peritonitis, before that I was relatively well and didn't know I had a liver problem. I could show you shocking pictures pre transplant and then amazing pictures in intensive care where I seem like a different person. Has your father attended any counselling sessions with local alcohol services ? When I was assessed for transplant despite not having had a drink for over six months they wouldn't take that as evidence, they insisted on my attending alcohol services, which was against my will at the beginning but now I even attend post transplant. You can either get a referral via your GP or you can self refer. When you and your father see the transplant team at Edinburgh that will make being listed much easier. You will be seen by the transplant alcohol specialist nurse as part of the process. Even a date for an appointment with alcohol services will make a big difference.

  • What are you disagreeing about?; i did not say the specialists had no empathy; i was talking about many experiences i have had personally with some staff who work for the NHS; if people have positive experiences then great; but not all people have positive experiences.

  • I totally agree with everything you say. Hope you're doing well .xx

  • I agree completely..no one ever blamed me or shamed me, not one nurse Doctor, specialist or surgeon. I think Susuannas friend just had a terrible experience..from what I understand she was not even there to hear that? He relayed that to her? Not saying he's lying..but you know, things can get misconstrued in the telling.

    And by the wY..these doctors have excellent reasons to worry. I just left the hospital where one of my bay mates recently got a new pancreas and kidney..Yay her...right?

    Then she took an overdose..not as a serious attempt, but as a cry for attention. She prefers hospital living to home living.

    Now she's complaining all the time, she needs more drugs..so ,u h pain, although she's straight out of bed lifting things and moving around the minutes there is no nurse or doctor about..the pain, the pain..

    Why is there pain! Because this past week they had to remove those precious new organs she killed..like it was nothing.

    She goes on and on about anxiety and her depression.

    Look I've seen anxiety and depression..this woman KNEW the difference between right and wrong..knew whT she was doing.

    ....how on earth those doctors and nurses that originally cared for her during her transplant don't slap her dead in the face is beyond me.

    They are SAINTS.

    so, I do think this one Doctor Susuannas is talking about is just one.

    The rest are angels.

    Just my 2 cents,.i could be wrong...

    Xxxxxx

    Ps sorry for the rant.

  • It's my understanding that once an alcoholic has demonstrated 6 months sobriety they are entitled to a liver transplant assessment should they need it. At the assessment both physical and phsycological assessments are made to determine if the patient is a good candidate for transplant.

    However my own experience was that I got very ill very quickly, my cirrhosis was not due to alcohol but I still had to push to go to assessment. The consultant considered me too far gone at first to put forward to transplant assessment. However after my family intervened I was sent to kings, assessed, put on the list and received a transplant.

    As far as treatment goes pre transplant then what you have described is about all that is necessary, by that I mean banding veins and blood pressure tablets.

    As or if he gets sicker he will be offered other treatments which mainly comprise of vitamins and minerals and possibly diuretics to help with ascities (water retention) and other meds for Hepatic Encephalopathy (HE).

  • Thank God your family pushed for you! ; im pleased you got your transplant!

  • Thats a good point. The first hospital you get referred to doesn't have to be the only referral. My referring hepatologist in response to the first hospital taking their time offered to refer me to Kings. Happily my first choice listed me soon after.

  • Completely agree about pushing for assesment..

  • I don't really have anything to add - the far more experienced voices above took care of the essentials! :) - but it's lovely to see how much you care about your dad, Paul. Wishing you both the very best, you couldn't ask for better support than you'll find on here :)

    Alexa x

  • I do not know if there is some hint here about me; but i have plenty of experience and experiences/ almost 40 yrs worth; i certainly do not claim to have as much experience in some matters re transplants for sure; however i can only say my own experiences/ knowledge.

  • Oh no, there was no hint - I meant everything I said in a nice way! There wasn't anything untoward implied, I was just saying that there are people on here who can give much better advice than I can.

  • Oh, sorry, many apologies! maybe im just paranoid!

  • I wasn't having a go at you. You are probably correct, not everybody will have had my positive experience. I was just trying to reassure Paul that in MY experience the NHS is non-judgmental. And you are right its good to see Paul trying hard to get his father the best care and outcome.

  • I should mention I'm a registered nurse. I began my nurse training in 1974 in Southampton general ( I'm retired now but as I'm now so well I'm considering returning to practice. Jim

  • Susieanna, I think you misunderstood SugarRush. She wasn't hinting at anyone. I think you feeling that a lot of members here are against you when they are not. I think a lot of members have gone through failure of the liver due to alcoholism and they are voicing their opinion. You are right in that not everyone gets great care. I can assure you though, your consultant would not take decisions because he is judging your partner. They're not allowed to do this and they work with a lot of people who go through alcoholic liver failure. A lot of the nurses too work with patients with same issues. Maybe you are feeling they are not caring for you because you are angry with them for not listening and agreeing to you?

    When I was in dying of liver failure, there was one patient who was an alcoholic. She had had a transplant years before that because she was an alcoholic but she gave up drinking. After the transplant though she began drinking again and she was not offered a second transplant. As much as I felt sorry for her because she was a really nice lady but she lost that chance. She didn't look after the most precious gift she was given. Then there I was going through liver failure without my own fault and had two young children one who is a special needs child and one who was 18month back then. Imagine if she was offered this donor liver instead of me? She probably would have drank herself to oblivion again whereas I would have left two children motherless. However, I believe if someone with alcoholism works towards it then they deserve a transplant. We have to follow rules. There is so much shortage of organs that consultants have to follow strict guidelines. I hope you will find a way around for your partner and I really hope he will stop drinking and be given one more chance and if he is given the opportunity that he will look after it gift of life.

    Good luck

  • Many thanks Jahida. I understand.

  • good news on the 8 months alcohol free-main thing at the moment is to concentrate on stabilising the liver and it may improve over time also nutrition very important-lots of info on that on this site

  • I know how you are feeling as my partner is the same age as your father and in the same situation - well, he was - after being diagnosed (with non-alcoholic cirrhosis) he was just left to get worse. However you must push your GP and keep pushing - I have done this and FINALLY on Monday he is being referred to a hepatologist at the specialist hospital, after almost 2 years of going backwards and forwards between seeing a gastro-enterologist and then thoracic consultant etc etc who really had no idea. It's lovely your father has such a caring son. I would suggest that you make sure if you can that YOU have support as this goes on, as it can be lonely and hard. Wishing you both all the best xxxxx

  • Yes all these are symtoms of liver damage...unfortunatelythere is no let up for these.ive had these symptoms for 17 yrs and its not good.

    To b listed for txplant he would have to b clean of alcohol for at least 6months.

    Mine is an autoimmune disease which means i cant remove the stuff thats causing the problem...i am borderline for txp asseassment .it is a horrible disease(liver)of any sort.

    I am honest with my children...26 down to 17.. as i dont believe in keeping too many secrets but thats a personal choice.

    You could ask yoir dad to b honest about the situation...just b sure you are ready for answers as it may not b what u want to hear.good luck.cazer.xx

  • The alcohol versus other causes re txp debate is a very difficult sensitive issue.the only way i can get my head around not being resentful is that alcoholism is an addictive disease in its own right so those that have or have had alcoholism have a problem just the same as the rest of us with other causes.

    Just the same someone with an extreme weight problem might have to loose weight then a drinker has to try to stop.

    I feel for all.of us with liver disease it is a silent fairly symptomless condition until it gets really bad then its horrible for us and carers and family.best wishes to all and lets spread support via this network to each other as best we can.

    Paul it is great you are looking after your dad as best you can but make sure you keep strong for yourself.

    Some purely practical things which might help get the doc to prescribe a multivit a e d k are ones we liver disease patients cannot absorb

    Eating little and often good food.also drink water rather than fizzy etc.

    He is probably feeling very nauseous the doc can give tabs for this so he then may be able to eat a little more ..i take metoclopramide 1/2a tab 2 a day.

    Try and go on the next appt if he,ll let you.have you any one to support you ..

    A friend or relation who will understand.

    Love and best wishes.xxxx

  • Hi Paul, my story is I had Hep C. and did like a drink or two but did not consider myself as alcoholic dependant.even so I still had to stop all alcohol which I did as soon as. I first got referred to the Liver consultant at my local hospital who I had regular appointments with and then she referred me to St James at Leeds to see a Heptologist. After I had seen them I then had to have an assessment at St James to see if I could get on the waiting list for a new liver, at the assessment I had lot of checks are done and I had to see a drug and alcoholic person to check I was not on drugs or drinking (which I wasn't) . After this I had to have random blood checks with my own GP to check I wasn't drinking on the sly!!!!. These had to be done on the same day if I got a phone call. Unfortunately I did not qualify to go on the list at this 1st assessment as I did not meet the required score. I had another assessment a year later and that time I met the criteria and got a new liver the same year. this was from Jan 2011 to Aug 2013. I was really ill by the time I got the transplant and had be in hospital most of 2013. as you can see it takes some time for the process and a lot of travelling to and from hospitals. I hope your dad gets referred to a heptologist asap and get an assessment only then will they consider a transplant. Good luck with everything and as mentioned in previous posts before - healthy eating and exercise is a must as he must be fit enough to have the operation and keep off the salt. stay positive and keep your dad positive I really do believe positive thinking helps. :)

  • Your story kind of mirrors my dad to be honest, that is really helpful!!

    U know yourself, if a stranger seen my dad at the minute they would think he has a terminal illness he looks that bad!!

    Terrible condition, liver disease!

    Thanks so much

    Paul

  • Yes, i was there; i attend all his appts re this; we just got a letter re 'the guidelines' do recall the specialist saying briefly that no transplant would be offered if he drank again; but i didnt maybe really believe it; fully comprehend this; i was convinced that if he relapsed; he would then be given a chance/ say after 6 months of sobriety like has been said/ if a new liver was ever needed. I think it may be the case that some Hospitals are not quite as strict re these 'guidelines' or maybe not; The specialist seems very good; but i just find this decision very harsh. Im not sure what stage he is at; a load of blood test results have been done/ they were done to re =evaluate his stage; but there is no information about the stage; will have to wait til we see him again. It was compensated but may now be de-compensated; i dont know ; although there is some hope according to the specialist provided no alcohol is ever drank again; but i dont know; it seems its a very odd disease; that things can be stable/ even improve/ or in other cases drastically go downhill......but as i said; no transplant ever to be offered here at this particular Hospital anyway. Re judgemental; im talking on my own personal level in some circumstances and on the person to whom im referring ; though it is not always the case and im not referring to the specialist; he is adhering to the strict guidelines however. Yes, it is a terrible disease, no matter what way it is bought about and thankyou Cazer.

  • Hi Paul,

    You've had many great replies already, but just wanted to chip in as well as I'm in a very similar situation to you.

    My mum, who's 60, was diagnosed with cirrhosis last October, after she was admitted to hospital with ascities (we didn't know it was ascities at the time, thought it was middle-aged spread but it suddenly got a lot worse). She spent 7 weeks in hospital, including a few days in intensive care when some varices ruptured. Mum completely lost her appetite and started wasting away. She's also lost most of her hair. Her consultant contacted the liver unit at Queen Elizabeth hospital in Birmingham in February requesting an appointment with a hepatologist there. At this appointment, the hepatologist decided she should be assessed for transplant, and the assessment happened last month. She hasn't been put on the waiting list yet, as the doctors would like her to gain weight first. She's due to be fitted with a feeding tube to help with this. My mum's cirrhosis was caused by excessive alcohol consumption, but like your father, has been sober since diagnosis. The alcohol councellor she met during the assessment process would like to see her again later this month, but she's not been told she can't have a transplant as yet.

    I think you mentioned your father has a good appetite? That's good news as hopefully that will keep muscle wasting at bay. Has he seen a dietician? Definitely worth seeing one if not.

    I feel for you, as it's hard seeing a parent going through this. The speed at which my mum deteriorated has been heartbreaking to watch. It's also hard work trying to take care of my mum, attend appointments etc, when trying to hold down a full time job too.

    All the best,

    Claire

  • I have been dealing with the same thing my husband was diagnosed in December of 2014 with hepatic encephalopathy with cirrhosis of the liver he has went from being a 260 lb man down to 170 lb man so I am like you worrying everyday he is taking lactulose rifaxamin and a few more pills he's very weak there are days when he doesn't get out of bed and he stays cold all the time

  • My Husband has been sober11 years

  • I dont know because i have pbc but if a threat to your own life is insufficient for someone to want to stop drinking then i suppose then that is difficult for the asessment team.what puts someone to b in a dark place to start drinking could still b there after txp so could rear its head again especially because of the challenges of surgery etc

    I would not want the job of choosing who gets and who doesnt!!! Hence the rules but thats omly as good as the info they get from the patient.

    As kimberley wrote what a waste of a kidney..it is so sad this persom has hood wicked the medics into being stable enough to recieve an organ.

    I for one am champing at the bit to get asessed and worry that i wont get to see my son married next may....its so unknown we just have to cross everthing.roll on the day of the liver grown for us...but im sure this would open a whole new can of worms!!!

    Sorry woops got a bit heavy.cazer.

  • It should be remembered that we live in a society that is awash with alcohol where to not drink is actually unusual. Drinking is seen as normal so its paradoxical that the individual who falls victim to the bad effects of this completely legal substance are vilified. Also, to have liver failure due to alcohol doesn't mean you were a falling down alcoholic. We all have different tolerances to alcohol and some are unfortunate to have liver failure on what are seen as acceptable levels. I just drank steadily over a long period without any ill effects ( that I or anybody else was aware of ). My illness was sudden and rapid and I paid a heavy price for my drinking. I'm so fortunate that I was well cared for by the NHS and now have a second chance with a new liver.

  • Sorry if that sounded like preaching to the converted.

  • Paul, the only thing I think is worth adding here is if you don't get the appt soon, chase it up. I had been referred to the hepatologist at a different Hosp and the letter got ' lost', so if I hadn't chased it no one would have realised. I would say don't wait longer than 3-4 weeks, if you haven't had the appt by then, phone the referring drs secretary, they will chase it up.

    I wish your dad all the best, he's doing everything he can by not drinking, and its amazing how the liver can continue to function with only a small amt of healthy tissue. It will take time, but it maybe that he has given himself a chance. I hope so!!

    Best wishes

    E

  • Your Dad will be in excellent and caring hands at Royal Infirmary of Edinburgh. I agree with others about pushing for the appointment if one isn't forthcoming though it should be because I believe they have a pledge that they'll see anyone who is referred in under a certain number of weeks - we were there within a fortnight for my hubby (from Ayrshire) and remain under the care of doctors there (initially under transplant team but currently off the list due to an improvement in bloods).

    Edinburgh has a fantastic team including liver specialist dieticians - at our very first appointment we saw one of them who did a thorough 'work up' of hubbies condition at the time and gave us an excellent and easy to follow diet plan to rebuild muscle and provide 'fuel' for daily living. You'll find that healthy eating for your dad goes out of the window in favour of lots of carbohydrates and protein but i'll let the dietician go into all that with you.

    The Scottish Liver Transplant Unit have their own website with downloadable patient guidance leaflets at :- nhslothian.scot.nhs.uk/Serv...

    All the best to you both, Katie

  • Hi Katie

    Thats great help, i take great comfort from hearing that about ur husband and the support he recieves!

    Thankyou so much

    Paul

  • Hey Paul,

    Please try not to worry too much. I know how hard it must be. I know my dad was like you when I was diagnosed. He suddenly noticed everything and everything was a symptom :) it does get better, I promise. It doesn't happen fast and it's always incremental. But the great thing is, is that you are the one that's going to notice those changes. When you have the condition, you're too busy living. All of sudden your entire life is just the pains and aches that come with a disease. Most of the time it's not even consciously. So it's totally normal that adding anything else, (like the actions of a normal life) might be too much.

    So it's really important to begin establishing things that your father can get excited or distracted by. Try everything you can. Anything that will take your father away from the disease. It's a blessing he won't even know the benefits of. Until it's gone.

    If you ever feel down. Or helpless, just remember that you, are that blessing. No amount of worrying will change your father's illness. (If it did, we would all be cured!) But the two of you can seek endless empowerment from the changes you can make in your life. Soon enough you'll reap benefits in his.

    Love, Light and Peace ✌

  • i was a chronic alcholic for over twenty years i was a 15st 6ft 1 man and went to under 10st ,i was admitted to hosp with liver chorrois and various other aliments ,the consultent give me 2 years to live if i carried on drinking so 1 detox lateri been dry 4 5 years ,the worst thing about drinking is not eating and drinking he must try to help himself an get maybe detox they do work ,goodluck

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