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. 🥰

[MrsD0ubtfire]

Hi, apologies for disappearing abruptly, I’ve had a lot of grieving to do in the last couple of months. I’m still not quite there but taking it a day at a time. Thank you for all your comments and the useful information you sent me @Richard-Alan. I finally received my partners medical notes from the hospital, thanks for suggesting this @2022Minks, this has helped answer a lot of questions and it shows the diagnosis was consistent with Acute Decompensated Liver Disease after receiving mixed information from the consultants. They later informed us that it had progressed to the fatal stage of acute-on-chronic liver failure, which is characterized by massive systemic inflammation and organ failure. I also found out that he should have gone for a scan in July 24 following an alcohol withdrawal seizure the previous Oct, in order to check the stiffness of the liver, I only found the letter in August. So I found that quite upsetting however I don’t think it would have made a difference as I believe he was too far gone so there’s no point beating myself up about it.

Alcohol is too readily available, it destroy lives and relationships. It brings out the demons, makes you paranoid and obsessively jealous, including hallucinations and bizarre behaviour something of which we had to endure for years. It is a silent disease and a lot of the symptoms and behaviours would have indicated liver problems however unless you are educated about this you just wouldn’t know. Such as ataxia, as a result we accused him of being intoxicated when he possibly wasn’t all the time, this has caused me a lot of anxiety and guilt despite us asking him numerous times to see his GP. The hospital have indicated that he didn’t have hepatic encephalopathy on arrival however this progressed during his treatment.

The only answer I won’t find out is what drove him to consume so much alcohol. Why some people become addicted and others not. He had a good life, a good job and 2 amazing children so I will never know why, the alcohol has robbed him and us of having a long and happy life together.

[Trewargas]

Hi Mrs D0ubtfire.Firstly, I am sending my heart felt sympathy and condolences to yourself and children, at this time of ongoing grief and loss.

I am writing this as a alcohol related cirrhosis patient, who has been decompesated 3 times including several overt HE episodes, and ongoing stage one HE daily. My first hospitalisation with decompensation and HE was almost 9 years ago to the day.

Your posts appear to be asking for assistance with answering several questions, but two in particular.

Firstly around Hepatic Encephalopathy (HE), and secondly, why your partner became addicted to alcohol?

My below comments are written, after I too also got all my medical records, dating back many years, thereby increasing my knowledge, whilst also posing many unanswered questions.

Also three years ago I "found" the fanulous BLT which I can see have also offered you some support.

Firstly with regards to the HE:

This I have found to be a very under diagnosed sympton of decompensated cirrhosis. I have found my GPs and especially the hospital (with the exception the hepatic team and Liver department) are extremely lacking in knowledge and understanding, unless it is a really obvious OVERT episode, with associated high blood ammonia data.

I have had many periods of HE hallucinations, behaviour changes, weird behaviours and a lot of stumbling and falling and slurring etc. Some of which, my memories are vague or non existant, but were later relayed to me, and were not involving alcohol.

My car keys were taken away and the hepatic consultant made it really clear that I should not drive.

I now rely on a strict daily Lactulose/rifaximin/laxido regime now to help manage symptoms and episodes.

A typical example was:

On one occasion I was making many demands to my sons about helping me with preparations for that days Sunday lunch.

Peeling the potatoes, preping the veg, putting the chicken in the oven, laying the table etc etc for the imminant arrival of my parents for the regular Sunday lunch.

I started getting very upset with my sons because they stopped helping me. I became erratic and was screaming "why aren't you helping me, they'll be here soon!"

Eventually I was brought to my senses by my youngest 14 year old screaming at me " They've been f***ing dead for 15 years!! No one is coming"

That was just a typical example of many, illustrating the confusions of an HE mind.

If you feel need further information regarding how your partner probably suffered with his HE, one possibility is the BLT virtual support group.

I am a member, and it is full of like minded people who are living with HE as well as several female partners, who take part to find out more about the disease, on behalf of, and for themselves and partners.

There is also a useful FB HE group for information and support:

facebook.com/groups/1185031...

I obviously can not specifically answer your other question:

Why your partner chose to drink and become addicted?

What I can say, is that I am certain he did not intend to become addicted.

It was probably a combination many many things, over a very long period of time, that slowly, almost insidiously ended up becoming a habit, that devastatingly for you and the children, ultimately developed further.

Unfortunately once HE takes hold and is present, normal rational thinking can leave some ones conscious thoughts, and then the way back can be so so hard, and sometimes impossible.

In my case some deppression, mental health issues, work stresses, previous PTSD from a services career and bringing up a disabled son on my own were my "reasons".......... but certainly not excuses.

Finally my thoughts are with you and children...........

Take care and please be kind to yourself.

Richard.

[MrsD0ubtfire in reply to Trewargas]

Hi Richard, thank you so much for responding and being so open about your own experience with HE. I’m glad your Son spoke out and it prompted you to get help, glad you are doing well. I have joined the FB group you mentioned in the hope to get some answers. I know it won’t change anything but it will give me a better understanding of HE. Even if it just meant I could help someone else in the future if I recognised the symptoms.

As with the ‘why did he drink’ I do believe some of it relates to him losing touch with his Dad 13 years ago after a fall out and other family issues such as his parents divorce and his brother having mental health problems over 30 years ago. He was a reckless at times with drinking and as a result lost his driving licence and his job in the year prior to his death, he never seemed to learn from it. In the last year he said he was depressed and lonely yet was still abusive towards me. Regardless of how many times we asked him to seek help he would ignore the offers of support.

I am very grateful for your help in getting my head round this, thank you and take care yourself

[Trewargas]

Hi.I'm happy for you and children that you found the HE FB group.

I can see that a couple of members have shared a little of their insights into their own HE journey's following your post. I'm sure more will follow.

You will find regular posts, shares and requests for information from members, that may go part way to answering some of the questions you or the children may have.

If you want to get a more 'live face to face' dialogue, remember the VSG (zoom virtual support group) that is hosted by the Outreach department of the BLT ( BritishLiverTrust).

I personally find that forum even more rewarding in some ways, as questions and queries can often be answered right there and then.

As you have eluded too, your partner had some major 'triggers' going back quite a few years. And of course there may be other issues, triggers and demons that may of impacted on his psyche, in a way that you weren't fully aware of.

I speak from personal experience when I say, men often keep a lot of mental torment hidden.

We still think it's NOT OK to open up.

His choice of escape and release, unfortunately, was alcohol.

But in saying that, it is the choice of many millions of people, causing untold misery and serious problems for so so many families.

I could go on at length about how much income the government takes in, from direct and indirect taxes on alcohol, but that really isn't appropriate here.

Your partner appears to have been of an age not too dissimilar to myself.

Where we were brought up, and used to alcohol being around us all the time.

I can remember you were really thought of as 'the cool kid' on the block if you could get served in the local pub or off-licence at aged 15/16!

It was the norm and expected that socialising involved alcohol consumption.

We were bombarded by covert and overt advertising all the time.

As I mentioned previously, and your comments attest to, habits form, then become more than habits.

Then add in certain life stressors, and insidiously alcohol takes control, and all to often, consumption gets out of control and takes over.

Add in the serious complications like HE, and you end up with the truly awful and heartbreaking situations, like you and the children find yourselves in.

I must apologise as I realise I'm rambling a little now.

Let me finish by saying this:

Your partner made the choices he did, and with all respect you, and especially the children, you will never know everything that was going on in his mind.

In parts you almost seem to be implying that you feel some level of guilt in all of this.

From someone who's been on a very similar journey.........please DON'T!

It certainly is not your fault in any way!!

If you feel I can help in answering any further questions that may arise, please feel free to ask away.

Give the kids a big hug and try to love yourself, even if it's just a little.

Take care.

Richard.

[MrsD0ubtfire in reply to Trewargas]

Many thanks Richard, you are certainly not rambling, everything you have written makes good sense and is a great help to me. You are the best person to give advise because you’ve been there and experienced it all. You are right, yes I do feel a sense of guilt and a lot of people have told me I shouldn’t, this is probably why I am searching for answers and to justify it all. Even my daughter told me today not to read into things too much. She is the opposite to me and is feeling quite numb about it all. I think the FB group will be good for me and reading other peoples stories. It just shows that we are not alone and there are more people suffering than you think. I’m not much of a face to face person when it comes to virtual groups but if I still feel the need I will definitely give it a try. Thanks again