Hi I'm new. My mum has CIRRHOSIS and HE :'(

Hiya.

I'm just looking for some advice really.

My mum has been a heavy drinker for 10+ years and was diagnosed with cirrhosis 2 years ago. Since then she has carried on drinking and has been in and out of hospital with a swollen belly and problems with bleeding (from nose and her bottom)

Last Friday she was rushed to hospital with heavy bleeding from her bottom. There she was stabilised and then I'm not too sure what happened (I was away at the time) but she became violent and rude to the staff. Very confused and disorientated. By the time I got back and visited her on Tuesday she was not my mum! She didn't recognise me, was hallucinating and very confused. They took her to intensive care and thats when they told me about her ammonia levels which could be causing her to behave this way! They were deciding on whether to carry on treatment of the ammonia levels or send her for a brain scan when she started vomiting blood from a heavy bleed in her stomach. She was then put on a ventilator for 4 days. They've today taken her off the ventilator and brought her back from sedation but the nurse has told me she is still very agitated, confused, hallucinating.

My question is What now? Does anyone have experience with this? My mums been on medications for the ammonia levels for a week now and last time I asked they still hadn't reduced.

Could she have brain damage?

Im on the edge of loosing my mind because i feel like I'm not getting any straight answers from her doctors. I've been told it would be very hard for me to talk to any kind of liver specialist but they are calling different hospitals for advice.

Any advice or experience would be really appreciated!

Thanks in advance

Hannah X

25 Replies

oldestnewest
  • Was she seeing a liver specialist when she was first diagnosed with cirrhosis? That would be the usual specialist to make such a diagnosis. You should insist on a referral either immediately or when she is discharged.

    From what you've described, she's been extremely ill. I hope she makes a full recovery and gets the appropriate care in the future.

    I had fairly severe HE and spent a total of 80 nights in hospital during 2015. Gradually iit became reasonably well controlled with Lactulose 30mg 4 times daily and a drug called Rifaxamine.

    I eventually became well enough to be considered for a transplant. Needless to say I stopped drinking. It was alcohol that caused my end stage liver failure. I was fortunate that I never had to have ascites ( fluid in the abdominal cavity ) that required draining, water tablets took care of that. Also despite having varices I never had any bleeding.

    I had a very successful transplant iin march and I'm now fit and well. I'm 62.

    You are in the right place for advice and support. There are msny here with a lot of knowledge and experience regarding liver disease from many different causes. Also the British Liver Trust have a lot of resources available to help you understand the causes, treatment and ways to live with this terrible illness.

    Don't forget that caring for a relative with liver disease iis stressful. So make sure you also get as much help and support you may need.

    Take care,

    Jim

  • She was but the only paperwork I could find is from a gastroenterologist. She's been having 6 weekly appointments for scans of her liver, weighing (checking her fluid levels in her tummy) blood tests. So someone somewhere knows a lot about my mum but I just don't know who

  • Thats fairly typical. The paperwork gets lost or misplaced with the generally disorganised life that comes with liver disease.

  • I have had cirrhosis for over 5 yrs close to death 3 times put on transplant list, lied about stopping drinking was found out when rushed to hospital with burst varacies, in that period in hospital went through bad withdrawel as they thought I had stopped drinkong if they new I was drinking they would have filled me with thiamin, as a result I have slight frontal brain damage, ataxia and of course encelopathy libido is nil and I have female breasts, all for a drink.the only possitive side is with stopping drinking 3yrs I am now stable not a 100% but alive, to have .an extended life span you have to cut out drink completely, the heart ache I hqve put my wife through shames me.best of luck.

  • Hi hannah..may i ask how old you are ?uou sound pretty young to be shouldering such responsibilty?

    Is there another family member who can help you.

    When the liver is damaged it does not perform properly and this leads to the serious probs your mum is having.

    The bleeding because her system is not clotting properly.

    Also the bleed from the stomach is from whats called a varice which is a varicose vein which forms in the stomach due to pressure build up from scarring in the liver..these can be life threatening due to the amount of blood you can loose very quiclly

    So they will have to stop these.

    The toxins build up in the brain and cause the temper etc its called encethalopathy.

    Was she still drimking when she got ill?

    Ask for her to.b seen.by a liver specialist.

    Good luck and get yourself some moral support of u can.xx.best wishes cazer

  • Hi thanks for your reply.

    I'm 26. I don't really have anyone else. My dad doesn't visit my mum they're not together and my brother is in Canada. I go to the hospital almost every day but I also have two children 3 and 2 and a job so things are very difficult at the moment. And to top it off I just can't get a straight answer from anyone. I asked her doctor about HE and explained I understood it would have started from her comstipation and he looked and me like I was talking jibberish and said - I'm not a liver specialist so I don't know much about HE. They're a fantastic hospital and they're caring for my mum amazingly but I just don't know how I can talk to someone who knows about what's she has got and what the next steps are x

    And yes still drinking

    I feel terribly guilty cos all the signs of HE she could have been living with confusion, mood swings, tiredness. When she would behave like this we would assume she'd been drinking. 9/10 she had but there were a few times she swore blind she hadn't and I didn't believe her :'(

  • Don't feel guilty. I grew up with an alcoholic mother and I know very well how damaging and guilt-provoking it is. You are doing your very best for your mother with no support and with young children of your own to care for - you are not superhuman. It's so frustrating and frightening to feel helpless in the face of all the medical bureaucracy but that, just as much as your not knowing if your mum was or wasn't drinking before, is NOT YOUR FAULT. I am also on the other side, my partner has cirrhosis and it has taken more than a year and a half to get an appointment with a liver specialist (not till October) in the meantime he has been seen by a very offhand gastroenterologist who knows very little about the liver. Finally I begged the GP to get a specialist appt. Maybe you need to go to your mum's GP and hopefully they will be on the ball enough to move things along as well as give you a chance to talk about some of what you are going through. This is a good place to come to for information and support but have you got a carers group locally or through your mum's hospital you could go to? Best of luck and hang in there xxxx

  • Sorry about spelling mislakes

    Cazer

  • Id definitely demand she sees a liver specialist; if she is prepared to stop drinking altogether; then there is hope; as you can see; people do come back from the brink; but she will only get one chance re she must abstain totally. Good luck; must be very scary for you xx

  • Thanks everyone for the advice and replies! I'm so glad I've found somewhere to talk about this!

    I'm going to see my mum today so will update on how she is doing.

    I'm happy to hear she has a chance :) from the way she look I wouldn't have thought she did!

    Did anyone else have trouble with veins bursting when nurses are trying to get blood. They tried 13 times to get blood from my mums arms to which almost all her veins collapsed. So in intensive care they had to put a cannula in her neck. Is this normal for someone with liver disease x

  • Hanz1108, people above had said quite a lot on H.E (Hepatic Encephalopathy) I too suffered, (I ended up in court being prosecuted for a "Breech of the Peace" in A&E as a result of my HE)

    So about HE : not many GPs know anything about HE (you are exceeding lucky if yours does have decent experience or understanding of it) I CAN say this as I was involved in a mission to "educate" GPs about HE, I was giving a speech in the European Parliement about my experiences of HE to alert GPs of the effects.

    Look it up on Google, educate yourself, for me it caused anger, temper, hallucinations, and a total lack of inhibitions, this means behaviour has no emergeny stops.......beware and try to understand.

    You sound busy in your own life, all I can do is say I feel for you, and hope things take a turn for the better!

    Good luck.

    Charlie.

  • Hi Charlie thanks for your reply. That's awful you were being prosecuted for some thing out of your control!

    May I ask a few questions about HE no problem if you can't answer them.

    My mum has been able to live a normal life despite the drinking. She had a job (she lost it when she came into hospital) she played with my children, did house work. But most days she would seem confused and her biggest thing was she would ask me the same question 5 or 6 times (much to my annoyance) She would fall asleep in the middle of the day, snap and be nasty to me for no reason and forget the simplist of things. All these years could this have been HE setting in???????

    When she behaved like this we all just assumed she'd been drinking and arguments would happen but now I feel so much guilt that possibly on some occasions (when we were sure she hadn't been drinking but her behaviour was saying she was) she had no control over it :(

    Also Doctors said her ammonia levels were 30 and I've read some peoples have been in the 120s

    30 doesn't seem high to me (but I'm no specialist) is this enough ammonia to make her almost like a dementia patient. Arms flapping around, shouting out for people who aren't there, not knowing who I am?

    Sorry to bombard you with questions.

    Thanks Hannah.

  • Strangley I do not know about ammonia levels. I do know that eating red meat (or having a lot of your own blood flowing around) leads to high ammonia, such that when I had gastric bleed they were concerned.

    The answer is absolutley YES "She would fall asleep in the middle of the day, snap and be nasty to me for no reason and forget the simplist of things"

    Mt experience (trying not to be too long winded here) I used to own & run a small high tec electronics company sending engineers all over the world. I was a clever high performing sort of chap. I slowly started to get to the point where I struggled to reply to emails, failed to transcribe a phone number accuratley (I was not aware of illness) and used to get horrible, nasty, shout (at my failure to do simple tasks, my issue was not drink related, my wife was concerned I was becoming demented. I once slapped her on the thigh, something not in my character, and not behavioue my wife would stand for......again she thought dementia....I was unaware of how "bad" I was, Wife asked me if I thought I was struggling with mental capacity, this not a subject I wanted to face, so replied no, I was NOT really aware of my "badness". Finally one day some youghert on the kitchen side made me "mad" I chucked the £400 Kenwood mixer, my wifes new coat (jacket) and lobbed in the litre of youghurt into the bin. I stared , frozen as I looked at what I had just done!

    I went to the doctor with wife and got Citalopram (an SSRI anti depressant) and this turned me round! I was already on Rifaximin and Lactulose to make you poo 5 times a day to flush the amonia away (difficult to handle) .

    Of the many incidents I had, at the time I did not see myself behaving in an odd way, it seemed perfectly normal behaviour, or if a bit strange, very excusable (some one upset me, I reacted to that upsetness, which as far as I was concerned AT THE TIME was fair enough. I had no inhibitions holding me back.....

    What you describe makes perfect sense to me, it sounds exactly like HE

    CAUTION : it may sound like HE to me, but I can not diagnose HE !! it is not my place, but when my wife approached our GP and said she had looked up HE on internet DR said PhaH! He just cant stand up to the aweful diagnosis, "I have seen HE, they are comatose" well, weeks later I started to sleep up to 14 then 20 hours per day.....

    Keep us all posted, you need support from people who "understand" HE and all the other complications, you do not need to struggle with this alone.

    If your medics can not agree and help and support, come back to us all, we can try to point you in a better direction, or explain to medics what is going on!! (sounds daft but sadly is the case too often)

    Charlie.

  • Have not yet had bad he but from what ive read yes a.lot of it could have been that.

    Ive got the sleepiness and get angrier quicker .say sentences.which end in the wrong word! Dont always know ive done it!!!! Forget things and am unable to keep warm even on the quite mild days.

    Do not blame ypurself for not realising abouy he gp or specialist should have told you and explained that if they knew themselves!!!

    If you fimd a contact for a gastroenterologist in a hosp.nearby that you think it might have been where shes been seen yhen that s prob your best bet try speakimg to the secretary they wont be able to give detail but you could try sayimg that as shes in hosp yoir not sure if she might have missed appts.you might then get to.know if she was seen there! Then let other hosp know if you come up with anything.

    Also ask for her to b seen by a liver specialist....you will have to b pretty insistant.

    Im si sorry that you are having to deal witj all this just remember that the most important tjings are you and your little ones so you have to put that top of the list.

    Your mum is probably unaware of you being there maybe everyother day would be okay to visit to preserve your own sanity

    Otherwise if you end up poorly from spreadimg yourself too thin then that will help none of you...sorry being bossy now but you have to be sensible for yourself.

    It does sound as if she needs a transplant but if she is still drimking they will not consider this but this where a liver specialist comes in as they will know what the options are.

    She is unfortunately a really poorly lady.

    Best wishes cazer.xxx

  • Cazer,

    ""funny"" your post reads like posts I wrote when with HE - mis spellings and odd phrases all over the place! It really is a ""funny"" experience, I hope you are managing OK. With the massive support of my dear wife, and friends and family I got through and looking backwards at my HE It is almost funny. Certainly an interesting experience!

    I do not mean to offend! your post just reminds me of me so much!

    Good luck and good health.

    Charlie x

  • Not in the slightest bit offended and i too look at them and think what am i writing????

    Also i see spelling mistakes which im too knacked to bother with !!!!

    Think consult is only just realising that im struggling a bit.

    Cant remember ha ha!!!! Did you say you had txp?

    Ive just had 3 month check for pbc and am ukeld 51 but have to wait for bilirubin to reach about 50before list asessment.i am worried that after 17yrs of this disease at a very high fatigue level i will not be fit enough to pass asessment..i gather its pretty full on.

    Ive been unable to do very much for all this time even though ived paced myself.

    I am now going on low fat high protein diet..so maybe that will help brain.

    I do find my filter seems to have gone...and am worried about offending people! I dont know wether to apologies in advance to my friends in case i say something out of order what do you think?

    Do you know anything about asessment at qe ?thanks cazer.x

  • Another thought which might be useful regarding behaviour, sleepiness etc. Along with liver stuff my husband was very sleepy, confused, strange, nasty (uncharacteristically so). He does have raised ammonia levels but he was also diagnosed separately with sleep apnoea (the airways close and oxygen can't get through while sleeping). He now has a mask which he wears through the night and these symptoms have improved. He sleeps far less in the day and is far less confused. This MAY be relevant to your mother...

  • Yes i went through the same with my dad and i know exactly how you feel. My dad was a drinker for years and was diagnosed with cirrhosis a long time ago but continued to drink. In feb my dad had a varices bleed that he was lucky to survive. He stopped drinking after that but his health slowly began to detioriate. His liver cirrohsis turned to decomponsated and along with that began sever HE episodes, he would see things and say things. His behaviour was abnormal. Because the HE was so bad it prevented him from having a transplant. My dad was awake a few days of the week then he would of passed out for the rest of it. One episode actually lasted 8days were he actually slipped into a grade 3 coma. He came around after that one then literally 3 days later i got a call from the hospital to say he had slipped into a coma. He was then brought to ICU because of an increase in medication and the liver not being able to cope the toxin levels risen to a high inwhich the consultants had never seen before he then started seizuring. They tried everything they could to stop the seizures but unfortunately nothing else could be done they said and he passed on Sat the 3rd. As a family we are heartbroken HE is a horrible condition. X

  • I'm so sorry for your loss!

    I'm so shocked there is not a lot of information regarding this horrible illness. I went a visited my mum today. She is now off the ventilator but more confused than ever. She can't talk and won't look me in the eye as if she can't see me. She isn't following any commands like she was before the bleed. She just looks vacant! She seems worse to me! What I'm more concerned about is her doctor/consulant isn't measuring her ammonia levels as he says they are concentrating on making sure she doesn't have another bleed. But they keep sedating her when he acts out or becomes aggravated. And then they bring her round and she doesn't respond well and lashed out so they sedate her again. I'm just very shocked that they're doing this.

    I'm not really getting any answers and it's driving me mad! :'(

  • They done that with my dad. Sedation isnt good for the HE no sedatives are. They can be triggers. There are many things that trigger it off. My dad got worse when he was admitted to ICU as they were not performing enemas to keep the bowels moving and naturally being in ICU will mean that there will be alot of medication increases which yet again is more things for the liver to try process which makes the HE worse. My advice to you would be to keep requesting enemas to try keep the bowels moving. Its the only way to get rid of the toxins. They only done a toxin test the day my dad passed and the doctors said they never seen levels as high. He was in a coma plus sedated for 2 days and given lactalose and rifixamin but obviously when he was sedated and not awake the bowels wernt going to move..i believe if they would of took the proper precautions to make sure the bowels were moving then the toxins wouldnt of got that bad in the first place. When i requested they do an enema the nurse was ignorant and told me sure what good is it going to do his condition. I had to request a member of the gastro team to come down and he told them that is important when the toxins are that high to keep the bowels moving. Unfortunatly it was too late for my dad the toxins built that much he started seizuring it was absolutely horrific what i seen and what he had to endure. HE has different stages. You get the behaviour and sleepyness in the final stages the comas and seizures can start. Before hand even when my dad was awake his behaviour was very off. He would be afraid to sleep at night incase he took a turn. I could tell a mile away when they were coming on. He would start talking things that wouldnt make sense and see things at times and also he would just fall asleep and i wouldnt of been able to wake him. HE is horrible in more ways than one the toxins are sore on the rest of the organs always make sure they tell you blood results to as the kidneys suffer with the toxins too. Dont stop asking questions and well educate yourself on the condition only for me reading about it many nights i wouldnt of new the half of it. The doctors that looked after my dad didnt tell us alot and it drove me mad.

  • You poor love you must be pulling your hair out!

    Have they got a liver specialist to see her yet....i really think this is the top priority as they would know what to give her etc..even if they only get hold of one on the phone.

    The bleeds are difficult as these can b life threatening so they are right to treat those first but then they need to get specialist advice.

    Maybe try ringing round the other hospitals and try the 'weve forgotten when her appointment is....' line you might just b lucky enough to get the right one.

    The only other option maybe would be to pay for a consult with a liver specialist..

    Not sure if this would work or you would have to go to them.

    Try and find out who is making the decisions for your mums care and what speciality they are if its a gastroenterologist they prob wont have enough knowledge.

    One other thought try speaking to the liver foundation and they may be able to help

    Im sorry not to b of much use but be assured that day or night there will.be someone awake if you need to chat.

    Sending you all my best wishes cazer.x

  • Hello Hannah

    You must be feeling all sorts of emotions at the moment and the difficulty is that you love your mum and don't want anything bad to happen to her but you may be feeling helpless because your mum makes her own choices and you cannot be responsible for that

    I would tell your mum how you feel about her situation and offer to be there come what may but ultimately your mum has to make her own decisions and I am sure that something in her past triggered this need to self destruct-- alcohol is a coping strategy for things that have happened in the past that we feel we need to cope with by using alcohol as an " anaesthetic " There is a lot of help out there for your mum and you and anyone else in your circle that are affected.

    Be kind but firm with your mum and know that she loves you even if she is in a dark place at the moment . Talk to her when she has not had any alcohol and hopefully you can move on together . Wishing you well 😊

  • Hi Hannah, you are dealing with so much just try and focus on getting through each day just now ..HE is just awful, my husband has it and has had it for 6 years some days are better than others ! there is good information from British Liver Trust ... Try and not use Google as all the information will overwhelm you ... well it did me ! It is possible for your mum to pull through but as I said just focus on each day , look after yourself and your children and just be there for your mum ...she will need to make other decision though and it's only your mum that can do that , much love xx

  • Hi,I had confusion and hallucinations so much that my boyfriend thought that I was on acid and i was also losing my balance and falling down all the time and before all of that I was having seizures.About year 1999 is when I bled out of my bottom and I didn't know why so that tells me that i was on my way to cirrhosis because in 2007 is when i was rushed to emergency because my boyfriend found me on the floor in a pool of blood n May5th,2007 and I had stopped drinking on January18th2007.That's when I started fillng up with fluid and hallucinating& losing weight.Lucky for me I stopped drinking or else I would not be alive.I believe that your mom has a chance at life if she completly stops drinking but if she continues to drink,she won't.I will chant namyo-ho-renge-kyo for her.She will get well

  • Hi ! This is so sad to read. I too had Cirrhosis / HCC of the liver and was lucky to receive a transplant. Before that my life must have been saved so many times. I was always having nose bleeds, loosing tremendous amounts of blood. I vomited blood and had to have multiple transfusions. This was due to varices in the asphagus (Sorry if I am not spelling a few of these words correctly) I found out about the liver 2007 and stopped drinking IMMEDIATELY. Although I did not seem to be drinking enormous amounts. The doctors told me that some can drink forever and get nothing and others especially women only need small amounts regularly. I even asked on this page about what people think if I did treat myself to a drink on special occasions NOW. I was totally abstinent for SEVEN YEARS. It is not that I NEED it. It is just nice to have that "feeling" for once in a while on certain occasions. I find it hard to explain, not wanting anyone to misunderstand me and think that I am being ungrateful (for my life having been saved) I know how precious it is to receive an organ and I know the doctors helped me a great deal. I too, carry a donor pass with me. But I suffer so many side effects from the medication I take, that I just thought it would be nice to "flip out" now and again. That really would put some "fun and quality" back in to my dreary and sometimes depressing life. Your mum must be very careful. I don't think she (putting it bluntly) shall live much longer if she carries on drinking. For a transplant you must be abstinent for 6 - 9 months. The last time I vomited blood was so critical that the pedreatics just looked at each other and shook their heads. One of them put their hands up and I noticed he was trying to say that I wouldn't make it to the hospital. I felt myself going too and was fighting to stay awake. I really hope that everything goes OK with your Mum. Perhaps she is on the waiting list. But she unfortunately will get no further if she still drinks. It must be very hard for you too, to see what is happening to her. I am very sorry. I wish you BOTH all the best and it would be nice if you could keep us posted. I hope this was not too long !!!!

    Best wishes

    Louise

    xxx

You may also like...