Help and advice please

This is my first time on here and it's probably going to be a bit long winded but I'm trying to get some help and advice about my mum. My mum is 58 and was admitted to hospital at the start of October as she had severe swelling in her stomach and ancles. When she was in hospital they drained 10 litres of fluid from her stomach, she was in hospital for 2 weeks they did loads of tests, she had ultrasounds and ct scans etc. My mum can be a bit difficult and she is a very proud woman. We all new it was related to alcohol as she was very jaundice etc and they kept mentioning liver but no one has actually said what is wrong with her and my mum keeps lying saying its a kidney infection etc which we all know it is not! She has been out of hospital for 9 weeks now and is completely bed ridden, she is so week, she is skin and bones but has this massive belly, they have increased I think it's called diuretics?? To 3 a day which I am told is a very high dose but her stomach is not going down at all! I just want some advice really as she is going back up to the hospital on Wednesday as an out patient and I want to know what to ask the doctors. The doctors have said a few times scarring of the liver and Iv been reading a lot on line so I'm pretty certain it is cirrhosis of the liver but I'm not sure if it could be something else? I'm actually quite scared as all the things I am reading about cirrhosis are not good and she is so unwell at the moment I'm not sure what to do! She has had physiotherapists in today who are trying to sort out carers for her cause at the moment me and my gran are having to do everything for mum as she cannot do anything herself because she is so weak she gets light headed and dizzy if she stands up for long and her tummy is so big she finds it difficult to move, she is also getting depressed crying etc because she is so fed up! She has literally been in bed for 4 weeks non stop as she will not even try to get out of her bed apart from to to to the toilet she has not been down stairs or outside since her last hospital appointment which was 5 weeks ago! Sorry to babble on so much just really not sure what we are facing here and looking for some advice!

38 Replies

  • * sorry meant to say she was admitted to hospital at the start of August not October!

  • This sounds exactly like End Stage Liver Disease. The fact she is yellow means her liver isnt working properly, the doctors mention scarring and that is almost certainly cirrhosis. Im assuming she is an alcoholic? Im sorry to give you a bad prognosis but this doesnt look very good at all, it sounds like she will need a transplant to survive this. Why don't you talk to the doctors and get copied of the tests so you see what the situation is.

  • Hi ralph thanks for the reply, the reason I havnt asked the doctor is because I didn't know where I stood in regards to patient confidentiality? As I said my mum is being very difficult and won't tell us what is going on, the last time we were at the hospital I tried to subtly ask what was causing the swelling and that was when they said about the liver being scarred but she didn't go into too much detail as my mum was there. She is getting blood tests every week and they are saying the liver and kidneys are repairing themselves and no one has ever mentioned liver transplant etc and I don't know why they would not have her in hospital if she is so bad, this is why I am getting confused as to what is actually wrong her? When I say she is yellow she is still yellow but she is pale yellow and compared to when she was actually in hospital she is nothing like that she was bright yellow when in hospital her eyes were all yellow glazed etc she is a lot better colour than then but her tummy is just as bad as it was when she first went in hospital, it went down loads when she got it drained but it has gotten just as big and they are not keen to drain it again because they had to puncture her tummy 3 times before they could get any fluid the last time, this is why they have increased the diuretics to 3 and she is to take lactolos or something aswell? Yes she was drinking heavily in the last few years a lot has happened to her in the past and her dad died last year and she was drinking every day so this is definitely the cause. She has not had a drink since she was in hospital in August as she cannot get down stairs so this is a good thing and think this could be helping her get better? It's so fraustrating I just don't know what the outcome is going to be?

  • It sounds like she went into decompensated cirrhosis, the liver needs around 25% for it to do all its tasks, when it falls below this you get the symptoms she is experiencing, they can be varied depending on the person. At the moment I would say its a certainty that she has Portal Hypertension, I hope they have checked her for Varices, these are veins that swell up in the body and can burst and cause alot of bleeding, but they can be banded to stop this.

    Now that she has stopped drinking the Liver might be able to get some function back and take it back over 25% and it might stay like that for a while. She will need alot of visits to doctors for the rest of her life, what they are doing right now is trying to prolong her life. Sorry if I have worried you, praying for your mum.

  • No youv not worried me, I really appreciate your help and a little bit of advice feel like I'm banging my head against a brick wall and although we are getting support in regards to our gp and physios etc and check ups at the hospital no one really knows what's going on and how bad mum actually is. I'm going to ask as much as I can at hospital appointment. I think because my mum was playing it down so much to begin with and because none of us have dealt with anything like this before I don't think me or anyone in my family realise the seriousness or it all, I knew she was very ill when in hospital but I thought once out of hospital she would get better but realising now its not looking like she is going to get better any time soon :-(. Iv never been on anything like this before but it's really nice to talk to someone who knows a bit about what is going on because as I said I don't have a clue. Thanks again for taking the time!

  • Im sorry i am telling you bad things, but its the truth, im guessing the doctors dont want to upset you.

    The doctors will have test results, they will be able to work out something called a MELD score. The liquid collecting in her stomach called ascites, the yellow is caused by bilirbin in the blood,these all count to her score. These things can go away if her liver recovers some more, but nobody knows if it will right now, you'll have to wait and see. It means right now she actually has Liver failure, they have also mentioned kidneys, they could be failing too by the sound of it.

    It would normally take more than a couple of years drinking to get like this, but it would depend on how much she as drinking, also the older you get the less your body can handle it, im sorry about this situation,

    its a very complex medical situation and new complications can spring up. The lactulose you mention is to get rid of the toxins in the gut, if you dont Ammonia gets to the brain and causes confusion and can lead to coma and death, you can take alot of this as it doesnt do any harm, you cant over dose as far as I understand it, if your mum starts to get very confused get some it down her.

  • Yes she has been told to take the lactulose but she is not taking it every day as she says it gives her the runs but I keep telling her to take it but she is only taking it when she feels constipated The doctor told her to take this as well but she is a bit stubborn and she is very depressed so I try not to push her too much as she gets upset or angry. I do think she gets muddled up and confused and she gets upset very easily but more out of frustration for the situation. I am definitely going to get as much information as I can on Wednesday from the doctors to see if there is anything else we can do.

  • make sure she takes it, it is meant to give her the runs, its the only way to get the toxins out of her body, its either the runs or ammonia going to the brain giving her the confusion you state and it can lead to coma and death,so keep an eye on her. Dont let the doctors fob you off

  • I will do, thanks again loads for speaking to me I will update once we have been to the hospital on Wednesday.

  • Sounds like your mother need to have the fluid drained again. Ihave to take 3 different diuretics to keep my ascites under control. It sounds like your is also anaemic. You should ask the specialist about cihrrosis. Did your mother have an MRI scan? I do know how she feels the fatigue is very overwhelming. Ask as many questions as you want if your don't understand ask again. You have to be upfront and forceful with the specialist as they think you know about the condition. But that is not always the case.

    Wackie Jacqui

  • Footnote I have to agree with Ralph. I am at the moment waiting to go on the list for a transplant. I might add that mine is not alcohol related.

  • Hi jimears thanks for your reply I appreciate it, I think that is the problem I think the doctors think we are aware of what's going on but because my mum is so secretive about it and trying to avoid it she is not telling us anything and I have been scared to ask before I incase I upset my mum but am definitely going to ask tomorrow. Yes she did have an MRI scan as well. I'm sorry to hear you are going through a similar thing, I see my mum and know how horrible you must be feeling!

  • Hi hayley. Perhaps when you go to the hospital on Wednesday you can ask to see one of the doctors by yourself. I know they are big on patient confidentiality, but if you explain that about your mother being secretive about her diagnosis and impress upon them how much you want to help her and that to do this you need to know her diagnosis and what the treatment plan is, the doctors may open up and talk to you privately. The fact that your mother is no longer drinking is a point in her favour, as is the fact that she will attend hospital appointments, its even harder if the patient is in denial about the damage they have done and refuse treatment. The fluid in her stomach means her liver damage is serious, and the lactulose as others have said means that she has Hepatic encephalopathy. If you go on the British Liver Trust website and read up about HE and other decompensated cirrhosis side effects it might prepare you for what is to come and give you an idea of what questions you might want to ask the doctors. I'm not suprised she is depressed and upset - she must realise she is pretty ill, and also she no longer has the alcohol as a psychological crutch. I do hope you have support yourself at home, and do come on here to ask anything you dont understand.

  • Hello hayley8585,

    It may also be a good idea to ask the doctor whether your mum should be following any particular form of diet and or fluid restriction and if so do your best to make sure she follows it.

    Most people with cirrhosis that is decompensated by Ascites are prescribed diuretics as in your Mum's case, but they are often also advised to to follow a restricted or low salt diet. Further if the water retention is particularly bad then in some cases they also have to restrict their daily fluid intake and certainly no alcohol.

    I too have cirrhosis caused by autoimmune hepatitis and it has become decompensated by Ascites. Like someone else that has already posted I take take 3 and sometimes 4 diuretics of various strengths each day and also have to follow a low salt diet in order to keep the fluid levels within comfortable levels. Fortunately I do not have to restrict my fluid intake. I was also told to keep physically active as this together with the medications is also an essential element of the therapy.

    Another thing you can try to do to help you Mum is to somehow persuade her to get up from the bed which you say she so far shown a reluctance to do,and try to get her to move around a little bit maybe for just a few minutes at a time but two or three times each day. Let her hold your arm and walk with her to provide her with some comfort especially is she has a fear of being breathless or losing her balance. According to my own doctors while diuretics are thought to work best when the patient is laying down actual bed rest is not generally advocated as a good way to treat Ascites due the incidental complications like further muscle wastage and bed sores etc. They usually say it is far better to get up and move around obviously if physically able to do so .

    I hope you can obtain from you discussion with the doctor all the information and help and guidance that you require in order to assist your Mum through her problem

    Good Luck


  • Hi bolly, thanks for the advice, I think I will do that with the doctors tomorrow, it is the liver clinic that she is visiting tomorrow so they might be able to spend a bit more time with us the last appointment mum had was up on the ward and it was so busy and we had to wait over an hour before we could see someone because the doctor was on ward rounds or something, mum got really agitated and she was uncomfortable sitting in the wheelchair for so long and she ended up being sick because she got herself so worked up so the last time wasn't great and I didn't feel as though I could ask anything cause mum was so desperate to get home but were getting an ambulance escort this time so hopefully it should be a bit easier. The physiotherapists mum has had in have been really great and they have suggested we write down everything that is going on and explain this to the specialist that we see tomorrow. I just really want to know what exactly is wrong so we can deal with it, I have been signed off my work now for 7 weeks as I just can't cope with working and looking after my mum, Iv got a 3 year old and a 4 year old to look after aswell so it's just getting a bit on top of me and I do want to go back to work but I feel bad leaving mum. My dad is having to work loads to make up for my mum as she is not working obviously and they have lost her wage so my dad is hardly there, I also think he is burying his head to the situation and is also in a bit of denial about everything! Sorry I am babbling on again. My husband is great he's been really good but I don't think he really understands and he is also self employed and works loads so I don't feel like I can talk to him so easily! Thanks a lot for replying to me and giving me a bit more information as I said before I will update on here once we have been to hospital tomorrow.

  • It sounds very similar to why I was admitted to hospital. My ankles were so bad I could hardly walk. I had alcoholic liver disease and hep c. They didn't discharge me until I was well enough 2 weeks later. I think if they are that poorly they should not be in hospital under 24hr care. My thoughts are with you.

  • Thanks so much for all the comments everyone I really appreciate all the advice! My mum has been told to go on a low salt diet and she has also been told to drink plenty of fluids. She doesn't have a great appetite and really doesn't eat that much even though we do all try to get her to eat, she has also been given juice drinks I can't remember what they are called but they are a food supplement as she was very malnourished, sorry I'm not very good at remembering the names of things but she keeps getting blood tests and they have said her protein or something to do with her eating and being malnourished is very low, I think the doctor said it should be 39 but mums is only 19. The doctor did say to mum to try not to stay in bed but she just can't stand up for very long even when the physios come they can't get my mum to do very much as she gets out of breath and dizzy etc, it is frustrating as she doesn't really even try she just says she can't do it, which I know is because of the way she is feeling but it's just hard to watch as we know she won't get any better just being in bed. I could actually cry writing all of this, it's just heartbreaking! Hopefully get more info tomorrow, I'm hoping they will say it's not as serious as I'm now thinking it it is and that she will get better iv seen a lot of posts on here to say that there were people in very similar circumstances who have been able to recover and lead a normal life I just hope that is what will happen to mum! If she could just get her stomach down I think that would make a big difference and then she would feel more able to exercise more and get up etc! She's said she will never drink again because she will remember how awful she felt and at the moment I don't think she even would want a drink because she feels so bad so that is definitely a good thing im just praying that will be enough to save her!

  • have they done an ultrasound at all? I am praying your mum can recover some more function back, yes some people can come back very well, Andy Fordham the dart player is going well 7 years after collapsing with the stomach fluid.

    Alcohol is a terrible thing, the worst thing is drinkers dont know they are ill until the liver is in near failure. More needs to be done about it!

  • Also there is another good forum ,

    One lady had her husband collapse similar to your mother and doctors said he was going to die, it took 2 years but he is pretty healthy now, he will never be 100%, but it something.

  • Hi Hayley

    So sorry for you and your Mum. 16 months ago I was in a similar situation to your Mum. I was admitted to hospital with hepatitis, jaundice, sepsis and liver failure. I was in hospital 5 weeks (my husband was told I was unlikely to make it). I had to beg to be discharged and like your Mum spent next few weeks bedridden. I couldn't believe what I saw in mirror, all my muscles wasted and stomach and legs severely swollen. I too am a private, proud person and it has taken me months to pluck up the courage to join healthunlocked. But if there is anything I can tell you or your mother please ask. My blood tests last week were all in normal range and I have US scan next week (at my last one in May, my ascites had disappeared). I have started driving again and generally feel well. Your Mum is lucky to have such a caring daughter. Take care, Anne

  • hello, brilliant you came back to some health! Did you have Alcoholic Hepatitis or have they said Cirrhosis?

  • Hi

    Hepatitis and sepsis - unknown cause (probably alcohol). I have fibrosis and in Consultants words "I will be treated as if I have cirrhosis with 6th monthly blood tests and US scans". No ascites or varies, all medication finished, little bit tired but otherwise fine. But I think about it everyday and read everything I can on liver disease. A

  • how did they find the Fibrosis? also why no confirmed cause? Thank god you havent gone to cirrhosis, you should be able to have a near normal life. Can the fibrosis be reversed?

  • Thanks for your interest, I find it quite difficult to talk about. They confirmed fibrosis after fibroscan. I still might have cirrhosis, I am making list of questions to ask after scan next week. I realise after reading other 'posts' how little I know regarding what actual readings mean. I think fibrosis can be reversed if I stick to my diet and lifestyle changes, or at least my liver can regenerate. I am living a near normal life except for my anxiety! A

    PS. My discharge letter says probable cause of hepatitis alcohol and sepsis - origin unknown.

  • I know how you feel about anxiety, i was nearly fainting with mine! Dont be worried about talking about it, it will help others and your anonymous really its just a name tag. I have had 2 sets of bloods done and an ultrasound, all normal, but im still a bit paranoid. Did you have an ultrasound and did it show anything?

    im finding it difficult to get a Fibroscan, im sure it will show something bad, but I need it done to know where I stand. A reading of 12kpa is the advanced fibrosis/cirrhosis mark, but for confirmed cirrhosis i think its 19kpa.

  • I've had 5 ultrasounds to date. They show fatty liver and multiple gallstones. Fatty liver improving each scan (the radiologist said liver not so bright and no new worrying features). That was May so will keep in touch and let you know after scan next week. A

  • Thats great anne48, thanks. Fatty Liver is the 1st stage of Liver disease that can then turn to cirrhosis or Alc-Hep. Its great it is being cleared out, so will your Fibroscan now improve?

  • hi anne

    what was your Fibroscan score please?

  • Hi Ralph

    I actually don't know. When I had it done July 2013 I didn't know there were scores. Something on my list to ask Consultant at next appt. My scan next week is ultrasound. I know it seems that I've rather buried my head in the sand but I am getting to grips with the info available. Regards A

  • hi anne

    heres a scoring card, F4 means cirrhosis

  • Hi Hayley, this will be too late for your appointment with your Mum at the hospital, but see if you can get her GP to appoint a social worker and she may be able to get some home-care visits to give you a break and time to get some of your life back looking after your own family.

  • Hi everyone thanks again for all the comments it's so nice to know there are others out there who know what we are going through! So we went to the liver clinic yesterday we had to get ambulance escort as mum can't get up or down the stairs so that was eventful to say the least but everyone was really nice and we got there and back a lot easier than the last time.

    So the specialist said it was decompensated liver disease caused by alcohol I think that's what she called it anyway she said it was first stage cirrhosis so at least we have a diagnosis and know what we are dealing with now.

    They have said she is on the maximum diuretics but she is giving her another different one to take as well as the 3 she is already on she is also to go into hospital next week to get the fluid drained again to make her a bit more comfortable and make it a bit more manageable for her to walk and things so I'm hoping this will make a difference but the doctor said they may have to drain the fluid a couple of times if the fluid does not go down itself with the diuretics, they have said they don't like draining the fluid as it can cause infection and can be dangerous if they puncture the wrong place but they have said that because mums tummy is so big and is causing her so much discomfort they will arrange for it to be drained so I think mum is happy about this although she is nervous about going back in hospital but they have said it should just be for the day.

    The doctor was very blunt about things and said mum was very lucky that it was only stage one as she has said the liver may be able to repair itself but only if mum takes care of herself and never drinks again which I hope she will never do again! My mum was never your stereotypical alcoholic she is usually immaculately dressed and hair and nails done and she still worked etc and she was hiding how much she was drinking from everyone including my dad and us but it just shows you how much damage alcohol can actually do.

    I'm just worried about my mum not having much will power and she is so anxious and depressed so I'm worried that she will not try to help herself! Even after the appointment yesterday she was told she needed to eat more to build up her strength but she has hardly eaten anything today and when I tell her to eat something she gets upset and angry! I still don't think the seriousness of it all has actually kicked in yet with my mum, she has told me not to tell anyone but I have told my dad which he said he knew anyway and I have told my gran but they have not told my mum they know, my mum told my gran that it was a blockage in her bowel! I have told my mum it's nothing to be embarrassed about and that she should tell her loved ones what is going on but she says it's her body and it's up to her so I guess I just have to leave it at that for the moment but fingers crossed she will be able to get better!

    I know I keep saying it but thanks so much to everyone for replying I really really appreciate the help and thanks for taking the time to listen to me babbling on!

  • You have made good progress Hayley and should be proud of yourself and of how much you have done/are doing for your mother. If she is agreeable to drinking the Ensure (or whatever the fortified drink is), then carry on with that. You should be able to get them on prescription and they come in a variety of flavours. Regarding normal food, I wouldnt press her too hard to go back to eating normal meals. She wont feel hungry, and also the fluid is filling up her abdominal area and making her feel very bloated, and you cant eat without feeling sick when you feel bloated. Also she will be going through alcohol withdrawal, have you had any support or advice on what to expect, as it will make her feel pretty ill on top of everything else. Offer her very small tit bits of food, whatever her favourite food is, but as advised before keep her away from salty things. People with her level of liver damage tend to graze and nibble at food rather than eat normal meals. She will probably realise that her family now know its not a bowel problem (after all people with constipation/blockages dont get fluid drained from their abdomen), however acknowledging her drinking would probably mean close family would follow that up with asking her why, and perhaps that's too hard a question for her to deal with at the moment. Just keep on doing what you are doing in the way of 'nursing' her, make sure you give yourself a break too or you will run out of adrenaline and suddenly crash and burn. Keep us up to date and ask anything you want.

  • Hi Hayley, I'm glad you got some answers yesterday and hopefully when she has the fluid drained next week she will feel a bit better. I am trying to remember how long it took my swellings to go down, I think it was about 10 weeks. It' a shame you can't tell how many others are going through the same. And she shouldn't feel ashamed, just having 2 or 3 glasses of wine in an evening over a prolonged period can cause liver disease and that doesn't make you a 'raving drunk', just unlucky. Take care

  • Well I would say overall the doctors visit was positive! Its great they think she can get some function back, if she does alot of the troubles she is experiencing will go away.

  • Hayley, I am so sorry that you and your family are going through this. My mum had a liver transplant 4 years ago due to a very similar story - alcohol leading to cirrhosis, the abdominal swelling and most of the complications you have described. I am sorry to say that it will likely be a rollercoaster and often be confusing and scary whether or not your mum ultimately needs a transplant. She is very lucky to have you there to care for her but my advice is to make sure that you also get the support you will need. Forums like this are great for getting behind the jargon and finding out what all the complex associated conditions are but its also essential that you get some face to face support too. I found a group called Alanon really helpful. It is a group for the family and friends of problem drinkers and it really helped me to understand some of the painful feelings my Mum's health journey brought up for me and gave me a safe place to share them without feeling like i was letting anyone doen. I know when you are caring for someone it can feel like you need to be strong all the time but sometimes you need a place to let go and have a cry. Alanon has meetings all aver the country and i am sure there are people there who will understand what you are going through and want to support you. All the best to you, your mum and your family. Lots of love and strenght to you.

  • Helo Again Hayley,

    I hope that all of the responses have been helpful. I also though that this page on The British Liver Trust website might give you some helpful information

    If you have any questions their information line might also be a good idea... the people manning the phones are very helpful and knowldegable.

    All the best,


  • Hi everyone I'm so sorry that I have not replied to all the comments have found the last few months to be very hard but I think my mum is getting better. After the hospital visit she had another 11litres of fluid drained this was about 4 weeks ago and so far it does not look as though it is coming back which is really promising! After the fluid was drained the true extent of her weight loss has become apparent! She keeps losing more and more weight which is worrying! She is still taking the food supplements but doesn't have much of an appetite yet. She has not really been out of bed yet which isn't great but she can get up and down the stairs with some difficulty, she is doing this every day to try to build up the muscles in her legs but she is really just going down stairs then wants to get back up to her bed because she is so week. She is getting regular blood tests which the doctor seems to be happy with apart from the one for her weight, she is being referred to a dietician which I'm not sure if this will help of not.

    Mum seems to be coping a bit better with things and is less adjitated but still suffers with anxiety etc. She is taking much more of an interest in things and has been ordering Christmas presents and things which is good but I don't really know how things will go I thought she would have been a bit more mobile and things and her weight really worry me! She has lost nearly 5 stone in total and keeps losing :-( but on the positive she is a lot better than 6 weeks ago!

    I'm back at work now 3 days and am managing to cope with looking after my mum along with my gran and she has carers in twice a week which we have to pay for as she is under 65 and is not yet registered disabled, we are waiting on hearing from the well fair department which mums doctor referred her for but I believe this can take months!

    Thanks again for all the comments and I'm so sorry I have not replied sooner! I hope everyone is in slightly higher spirits with Christmas coming up :-)

    Hayley Xxxx

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