Question about HE for mother in law

Hi, I am posting on here to ask a question about my mother in law. She has just been diagnosed with cirrhosis , she was in hospital last week with ascites, they drained 12 litres of fluid and she had tests. She is now back home and awaiting an hospital appointment to have a camera into her stomach?. The worry we have is she is being sick and is nauseus,fatigued, spilling drinks as her hands are quite weak and shaky, she is also getting mild confusion. I have been reading through some posts and seen about HE, do you think we need to get her checked out or are we worrying too much and these are normal symptoms for what mother in law has. I would be most grateful for any advice


11 Replies

  • Hi Gina, I am hoping your mother in law has now been placed under the care of a liver specialist.

    She sounds quite poorly at the moment - obviously having ascites is a pretty advanced symptom of cirrhosis. If you are at all concerned about her health don't hesitate to get her to doctors or A&E if you feel she'd be better off in hospital.

    Hepatic Encephalopathy goes along with advanced cirrhosis and does lead to confusion issues and also a specific flapping of the hands called asterixis. She should be being treated with LACTULOSE in the first instance to ensure she is using the toilet fairly frequently and thereby removing toxins from the body. There is also RIFAXIMIN - a tablet which is usually a consultant prescription (first of all) to also help with HE symptoms.

    There are two sort of recognised forms of HE the milder type with confusion and memory issues, sleep disruption etc. and the more serious aspect where the patient can undergo major personality changes and act bizarrely and totally out of character plus it can be dangerous and lead to blackouts and even coma.

    If you are in the least bit concerned then do get her checked out.

    Katie x

  • Thank you for your reply Katie. My mother in law is still undergoing tests at the moment, she is having the camera down and we have been told that once they has all the results in the consultant will be in touch . They say they need to find out why my mother in law has cirrhosis as she doesn't drink so obviously it is a non alcoholic cirrhosis. We are hoping for answers to why she has it. She is going to the toilet ok, and is on water tablets. We have been told to keep her on the low salt diet and she is eating small amounts frequently. The vomiting and confusion we have noticed more today. It's a frightening time as we don't know what to look for and how to deal with this illness. Thank you for replying we are most grateful Gina x

  • My hubby has cirrhosis which came completely out of the blue, he has been t-total all his life and his has been due to Auto-Immune Hepatitis. His only came to light after he had burst varices so he has the endoscopy frequently to check for and remove those. He had to have a biopsy to confirm diagnosis and his is a bit bizarred in that his AIH must have done it's damage without anyone knowing and by the time he presented at hospital he already had advanced cirrhosis.

    Lactulose does make the patient do a few stools a day but for someone with cirrhosis that is good. Lactulose is a laxative but it also has special properties which make the toxins leave the body so if she isn't on it already she should be to make sure that she is ridding her body of toxins.

    The British Liver Trust has an excellent page and downloadable leaflet on cirrhosis and its many different symptoms at :-

    When my hubby was diagnosed in April 2012 I found it a very informative read at a time when all was a blur and a horrendously worrying time.

    If you need further advice or to run things past folks who've been where you are now or indeed where your mother in law is now don't hesitate to ask.

    The entire BLT web page is really informative on all the various conditions, treatment options and such like.

    Katie x

  • I will have a look through the leaflet Katie, thank you. I will ring the doctor tomorrow about lactulose and see if we can get her some.. Maybe the biopsy will be next. When in hospital mother in law had ct scans, blood tests etc, plus the fluid was sent off for testing. We are assuming that when all tests are complete the consultant will send for us to let us know what we need to know and be doing.. It is nice to speak to someone who understands, thank you again

    Gina x

  • Hi Katie, just to let you know that we spoke to the doctor today, he has sorted mother in law some lactulose and he is also sending the nurse next wednesday for blood tests for renal function. She is lots better today .

    I never asked you yesterday about your hubby, I hope that he is ok. It's not a nice thing to go through.

    Thank you again

    Gina x

  • Thanks Gina, good news that some progress is being made - the lactulose should help with the confusion issues if they are HE symptoms - my hubby takes 20ml morning and night (or more if we feels he needs a bit of toilet help).

    Hubby is ticking along, he was listed for a transplant in 2014 but delisted after 10 months after an improvement in his blood results. In the grand scheme of things he's doing alright and we hope that lasts but time will tell.

    He is under a local gastroenterologist and also still under one of the doctors on the transplant team at Edinburgh even though he isn't currently in the transplant system and we have great faith in her that she's keeping a good eye on him.

    All the best, Katie x

  • After I spoke to you last night I asked my mother in law if she had been to the toilet and she hadn't since last monday so its a good job you mentioned it. The doctor has said that if she doesn't go to the toilet after this then to get back in touch.

    That is good news if your hubbys bloods are not too bad and no transplant needed yet. Its also good that he is being looked after by some good doctors. What is life like living with cirrhosis, do you lead a normal life as possible, at the minute its all trial and error with us.

    Gina x

  • Glad to have helped. Hubby goes 3-4 times a day now and somedays much more (we have to watch out on those days because the need can be somewhat sudden and immediate. When we are out and about I always 'clock' where conveniences are incase he suddenly needs to go). He finds that if he isn't going as often a bit of fruit cake, dark chocolate or coffee also help get things moving so to speak.

    As regards living with cirrhosis, for us the first two years seemed to be none stop appointments what with all the endoscopy's and banding he was having to have. Then when he got listed for transplant it was every 5 weeks over to Edinburgh necessitating overnight stays because thats a 200 mile round trip for us.

    Now that he's off the list, life is a little more settled. We have appointments every 3 months locally or at Edinburgh. An annual endoscopy at Edinburgh and Ultrasound Scans every 6 month.

    Hubbies main symptoms are chronic fatigue, disturbed nights and symptoms of HE - muddled speech, confustion, forgetfulness and worsening short term memory. He also has slight hand tremors. He no longer works, he moved to Scotland to join me not long before he fell ill and never found work up here but he couldn't do his job now anyway due to his ill health. He needs help with medication, keeping him on track with meals, suport for all his appointments and I do all the liaising with medics etc as he doesn't take any of it in. He had good days (where he is able to push himself to do walks etc.) and bad days where everything is an effort and he has to listen to his body and rest when he needs to. He took ages to come to terms with the illness and the limitations it has brought (complete lifestyle change) and although he hasn't fully gotten over that the situations that we've learned of through this page have taught us that things could be a hell of a sight worse. So we get on with things and keep an eye out for any possible signs of his condition worsening (fluid build up, HE worsening, pain, any blood in stools, weight loss etc.).

    He had to go on a high carb, high protein diet, got prescribed protein supplements and eats often so as to maintain his weight. In 2013 he was deemed to be malnourished at 8 1/2 stone and due to the care we've taken with his meals and snacks he's risen to 11 stone and regained muscle which is almost unheard of in a cirrhosis patient - so we've obviously been doing something right. He tries to do a 20 minute stroll every day to keep his heart and lungs healthy and it was stressed to us at transplant assessment that this was really important.

    We muddle along, actually we are just back from a 3 week tour of northern Scotland in our caravan and that was a real tonic to him - well both of us I suppose.

    Anyway, good luck going forward with your mother in laws diagnosis and treatment. Hope they get on top of it soon.

    Katie xx

  • Hi Katie, here I am again asking questions, sorry. The question I need to ask is can you help us with what foods that Jean(mother in law) can eat which will help build her up, at the minute we are finding it hard getting her to eat a lot. At the minute her weight isn't too bad but we are worried that it will soon go down as she isn't eating much at all.

    Thank you

    Gina x

  • No worries, you need all the same info as we went insearch of at the start. We followed a plan given to us by liver specialist dietician but until the cause of your mother-in-law's condition has been identified i'd better not share that with you because it might not be appropriate if for example she has fatty liver disease or such like. It was specifically for pre-transplant cirrhosis patients who's condition had already deteriorated.

    However, the BLT page has a guidance leaflet on diet for liver disease which might be more appropriate at this time but as the medics progress the diagnosis etc. ask for referral to a dietician - they seem few and far between but do ask.

    Diet page is :-

    Little and often is key, no long breaks between meals, limit salt as much as possible, carbohydrates and protein. A good supper is recommended as during the night when there is that long fast the liver will start to use the body's muscle for fuel as it can't metabolise food for energy properly any more.

    If you don't get further advice down the line, I can send that plan but i'd better not at this stage in case it is inappropriate to you M-I-L.

    Katie xx

  • I had the same experience in 2007.they released me too soon and the same thing happened to me until I had to go to the emergency and finally I got nine two liter bottles drained out of me and they put the camera down into my stomach.Before that though My hands were also shaking and I was weak and having hallucinations because my ammonia level was way high before I knew it I woke up in the hospital.My advice is to get her to the hopital before she gets worse.I hope she gets better.

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