hepatic encephalopathy preventing a transplant

My dad has been 6 months free of alchohol after a varices bleed inwhich he near lost his life. Few months after discharge i noticed alot of behaviour changes with his mind. It wasnt long after that, that he started taking seizures. He was put onto lactaluose and rifixamin and diagnosed with HE. Also his cirrohsis had progressed to decomponsated. Even with all the treatment for HE nothing has stopped the episodes from coming. He literally gets 2 days break before another starts, they cant find what is triggering them. So on Sat i got the call to say he slipped into a coma and was being brought to ICU, he is still unresponsive. He was meant to be assessed for a transpant and that is the only treatment for both conditions but because the HE wont slack off, its ruining his chance for a transplant. Has anyone faced anything like this with HE. The consultant told me that in his time, its the most severe case hes seen.

23 Replies

  • Having suffered from mild HE I wish you and your father the best.

  • Thanks its a horrible condition.

  • Hello there. Firstly I,d like to say my heart goes out to both you and your father. I suffered badly from H.E myself. Used to fall a lot, leave the house walk to the end of the street and not be able to remember where I lived. I became a hermit when I cauld no longer cover my lack of memory up. Just out of interest I was wondering if your father was on any medication that alters the mind, anti depressants ect. I ask because I was on them and gavapentin (not sure of spelling ) which I,d been given for nerve damage due to alcohol and it was only after my H.E was so bad that I missed appointments, picking up prescriptions ect and thus inadvertently gave them up that my H.E slowly began to clear. I had previously told the doc that I didn,t feel right on the gavapentin (I later found out that it was intended for people with epilepsy to block messages from the brain ). A different doc later told me quite a few people had probs with it. Anyway, was glad to get off both drugs even if it was by default! I,m not in any way suggesting that your dads H.E was contributed to by medications he may have been on, maybe my H.E was going to slowly clear anyway, who knows, but it might be something to look into, the timeline when things began and what your dad was on then. I hope you have a good doctor that you can talk frankly with. I,m sure someone on this site will know more about the position your dad,s in. I,ve always had really good advice here. Hope you find the help and answers you need. In my thoughts , take care of yourself. anne (tillycindy )

  • Thanks Ann. He is on medications for the liver according to his consultant alot of them are bad for the HE because the liver isnt processing them right and there making toxins worse but unfortunatly he needs them for the liver. His blood results were fine and his heart and everything else but the toxins have built up that bad hes in a coma. He actually was on an anti depresent but they took him off everything that was a potential trigger but the episodes wont stop. X

  • My thoughts are with you and I hope your father improves, it is an awful condition , my husband suffers from HE and has done for the last 6 years in the main it has been managed by lactulose and rifaximin , more recently it has become more severe . Over the years we have made dietary changes and my husband no longer eats any read meat , this has made a difference . You need to ensure your dad drinks plenty of water and eats a good balanced diet . There are foods that are particularly good for the liver and you will get more advice from the BLT. Best wishes 😊 X

  • Unfortunatly all has been tried but nothing has made a difference. He has took that many episodes so rapidly that hes slipped into a coma his body couldnt cope with the massive amount of toxins. The lactalose and rifixamin didnt keep it at bay. He took 3 massive seizures today and the consultant has told us to prepare for the worst. Hearts broke x

  • I am so very sorry for you all, try and stay strong although I appreciate how difficult this will be for you ,my thoughts are with you x

  • so sorry darling, God this is a wicked disease you feel so powerless to make things better or help your loved one. My dad had kidney failure followed by total organ shutdown after years of being on dialysis, I remember feeling angry at the time that he didn,t fight more ( yeah I know! ) and angry at the docs that they didn,t do more, and angry at myself that I cauldn,t do more and just find some magical remedy and fix everything. A wise nun once told me that all prayers are answered just that sometimes the answer is no. Thinking good positive thoughts to send your way. I hope you have plenty of family and friends to support you. Peace to you both. anne (tillycindy ) xx

  • Thanks so much. Today was horrific i am just heart broken he fought so hard 💔x

  • Sorry to hear about your dad's problems I do hope he gets better I have it also but not to that exstent prayers with you and your dad lots of love your way ricky

  • My husband has cirrhosis with hepatic encephalopathy he has been hospitalized twice in the past 7 months he did not even know who I was for three days they have him on rifaximin and lactulose and he is so weak he can't get out of bed now

  • Sorry to hear that. There is always something that triggers HE episodes unfortunatly in some they can not find the trigger. They got so bad with my dad he began taking seizures. Sadly he just passed today and i am heart broken. My only advice is try everything to keep the bowels going. With my dad lactalose and rifixamin was sadly not enough to keep them at bay. X

  • So sorry to hear about your dad x

  • I'm sorry to hear about your dad and I'm sorry for the lady above who's husband is in a bad way.

  • Thanks its been a horrific time for us its a horrible condition x

  • Hello Hun,

    My husband managed to convince the team to not transplant him for a period due to his HE. He was extremely difficult to deal with - I always described it as a mixture of ADHD, Alzheimer's and

    Tourette's. This is a very difficult time for you and your family and I pray that your dad pulls through and you are all given the strength to fight this as well.

    Yours truly,


  • If my dad would of had the transplant i wouldnt have lost him but he fell ill before he was even on the list because of the constant HE episodes he went to stage 4 HE and sadly slipped into a coma sat and passed today. Transplant was our only hope but unfortunatly his wee body couldnt deal with the massive toxins and he got very sick before he even had the chance 💔💔

  • Oh Hun... I'm so sorry... I lost my mum through this awful disease so can understand what you are going through...

    I pray that you are all given the strength to face this terrible loss... My condolences to you and your family.

    Lots and lots of love,


  • Thanks hun xx

  • Sorry for your loss, I lost my sister to this illness so can empathise with you. I hope you have lots of support around you at this time. The pain doesn't go, it just becomes more in the background as time goes on.

    Wishing you peace and comfort from happier memories.

    E x

  • Thanks your the first person ive heard of that lost a loved one to this illness. It was heart breaking to watch. Just trying to be strong xx

  • As someone who had multiple admissions with HE pre transplant I completely understand your ordeal. I'm so terribly sad that he didn't survive long enough to benefit from a new liver. Our thoughts and regard for your loss will be with you in your grief.

    Jim and Lucy

  • Thanks for the reply... its hard to deal with whats happened when we know its a condition that could of been prevented.. there was alot of mistakes made by the hospital regarding the precautions taken about the HE. The lactulose and rifixamin was not working and when he slipped into a coma they refused to do enemas to make sure bowels would move even when i requested it. The medication was increased in ICU which meant more toxins were being produced so they built up that much fluid started gathering on the brain inwhich the hospital refused to remove because they said it wouldbt help the fact hed liver cirrohsis and he started taking massive seizures that stopped and started every 10mins. They then broke the news that they were doing nothing else for him. He was doing so well but the HE episodes just kept coming constantly, he would of had 2 days out of a week were he was able to speak. The doctors couldnt find the trigger.

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