Hepatic Encephalopathy full symptoms

[MrsD0ubtfire]

My partner recently passed away from decompensated liver disease after developing jaundice and ascites, resulting in having to have kidney dialysis. He was an alcoholic for a number of years and we did not realise his illness was so far advanced. He developed a lot of complications after being admitted to hospital and died 3 weeks later. I have a lot of unanswered questions about hepatic encephalopathy as I think he developed this early on when we just assumed he was intoxicated. He had problems with his mobility, slurring and hallucinations, generally acting weird. There is not much detailed information online outlining the full symptoms for personality changes and unusual behaviour. Does anyone have more information on this please?

[Ewife]

Deepest sympathy for you. Im sure lots on this forum will be able to help you make sense of it all. My friends husband died from alcoholism - he had a collapse/seizure/brain bleed which resulted in his passing. It wasnt until my husband developed end stage liver disease with covert HE that i realised this must have been what my friend suffered. Its very difficult when someone is still drinking to distinguish. I feel guilty that we just thought he was drunk when he was suffering, but i also realise that he must have known, been told by medical staff he was ill but he chose to hide and deny it - his wife did too, although I don't think she did know the extent of his liver issues.My husband fortunately didnt have adiction to battle with. Im thankful every day for this, adiction is such an awful illness. Rifaximin and Lactoluse worked to keep him stable. He had a transplant this year.

Atb, and be kind to yourself.

🤗 Ewife

[MrsD0ubtfire in reply to Ewife]

Thank you for your reply Ewife, this is very helpful. I also have a lot of guilt and wondered if his liver disease could have been picked up sooner, however he was also in denial about his drinking despite us constantly asking him to seek help from the GP and alcohol groups. We were told he would need to admit he needed help himself however I don’t know if someone in that condition can make decisions for themself. He also had a seizure a year ago which was put down to him trying to stop drinking, however this may have been related to HE but we will never know.

[Ewife in reply to MrsD0ubtfire]

It sounds like your poor brain is trying to process it all. I guess seeing the adiction as an illness helps me. I think my friend knew really far more than we thought, but he just felt like it was a struggle he couldnt win. He was very depressed and emotional towards the end. Im sorry I can't really offer much information or support, but having been through grief I recognise that you are going through that process and your mind is trying to find a level of acceptance. My heart really goes out to you. I can see your husband was very loved by you and he will have known that, and appreciated your loyalty and patience with him over time. I hope soon you can remember all the nice times and things you loved about him with a smile on your face. You will eventually! You need to give your brain time to collect itself and deal with what has just happened - you are probably still in shock.

Take care

Ewife

[MrsD0ubtfire in reply to Ewife]

Thank you I appreciate your kind words. Yes it’s been a lot to take in and I am trying to make sense of it all. We assumed he would finally get the help he needed and come out of hospital possibly with life changing problems but be able to enjoy life again. It all happened so fast and we didn’t really have chance to say goodbye. All information is a great help to me 🙏

[MrsD0ubtfire in reply to Ewife]

Ewife I am glad to hear that your husband is doing well following his transplant 😊

[Millie09]

I'm so sorry for your loss MrsDoubtfire, This disease can be awful , im 16yrs since diagnosis ,I don't have any information regards to HE myself but wanted to send my condolences to you and yours

Take care of yourself

Linda x

[MrsD0ubtfire in reply to Millie09]

Thank you so much Linda I really appreciate that. Take care of your yourself too x

[Richard-Allen]

I have sent you a private message. I hope this is of some help.

[MrsD0ubtfire in reply to Richard-Allen]

Thank you I will take a look 🙏

[Aztec632]

So sorry to o hear of your loss. Take care of yourself x

[MilliganHorse]

I am so very sorry to hear of your loss, take care of yourself and above all know that your support and love was everything, sadly this disease and the HE and complications takes over the physical and mental person and my heart bleeds for you. I wish you strength and positive energy for the future.

[2022minks]

Sorry to hear your loss, furry hugs to you. Its so difficult to watch your loved one live a shortened life with this disease and what it robs from their body and mind.

Most patients will have HE with liver disease and at many different levels and for my experience with my Mum it was the one area we thought we didn't get enough help with and although it escalated more towards her end of life I feel she suffered from this in the background for many years. Mum had Nash and never touched alcohol so I have observed from a non alcoholic side and she had extreme personality changes so your partner may not of helped with consuming alcohol but there is still a black hole in liver disease for mind health.

If it helps to get more answers please think about writing to the hospital where he was treated to gain more understanding, send it to Pals as they will be able to get info from his consultant and they are excellent at getting you answers that might ease your questions. I think about 6 months after Mum passed I wrote a "Reflections of care" on my mums journey of good and bad aspects, I sent this to gp, hospice, consultant & pals in a way it answered many of my questions and also helped my own grief xx

[MrsD0ubtfire in reply to 2022minks]

Thank you so much 2022minks for your comments and sorry to hear what you had to go through too with your Mum. You are so right that this illness robs them of their body and mind which is painful to watch and yes I don’t think the consumption of alcohol helped. I have taken your advice and contacted Pals, they have given me a form to complete to request my partners medical records so hopefully I will finally get the answers I need too 🙏 x

[2022minks in reply to MrsD0ubtfire]

So glad you have done this and I hope you get some answers to your questions it will also in a small way help you come to terms with what has happened in such a small space of time and hopefully give you some peace. Let us know how you get on xx

[Tinkbe]

So sorry to read of your loss. It's such a rollercoaster of a journey and makes you feel very out of control. I can understand your need to seek answers.

Re your question regarding hepatic encephalopathy - I've not found anything definitive but I think it comes down to identifying changes of personality which will presumably vary from individual to individual and be dependent on severity and other aspects of his health/situation. My partner was wobbly, slurring, withdrawn and speaking very quietly when it started to happen to him. But similar symptoms at another time were put down to dehydration (his medication had been changed and we hadn't realised how critical getting hydration balance was). Luckily, we were able to rectify the situation in both instances with clear advice.

Another example of multiple conditions with similar symptoms - my partner suffers with chronic peripheral neuropathy and has had repeated bouts of cellulitis (or that's what it was thought to be). I've since discovered that it's sometimes been venal eczema and/or a condition called 'red legs'.

In short, there are many overlaps between different things, and nothing is clear and dry cut. So you may get feedback that will help you to understand what happened and when, but be kind to yourself if it's still not clear. It is a difficult disease and hard to pin down things exactly even with excellent support.

I currently grieve the loss of my strong, vivacious partner who is now a frail old man due to stage 4 Cirrhosis - but whilst life is calm, I appreciate every minute with him, especially as I know how quickly it can get out of control.

I'm not religious, but bless you for being there for your man. Try to remember the best of him.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear MrsD0ubtfire

We're so sad to read this, and very sorry for your loss. If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 4pm on 0800 652 7330 (excluding bank holidays).

With best wishes from all at the British Liver Trust

[dooley1]

HE is terrifying at its worst for the person suffering from it and anyone who loves you witnessing it! Strikes out of the blue sometimes, but when you’re familiar with the early symptoms it can be headed off slightly. Lactulose, thiamine and staying well hydrated is so important. I’ve been there and it’s a very scary place to be. Please everybody be sympathetic and comforting to anyone suffering from this even though it is so confusing for anyone to understand. Lots of love to you. 🥰