Hepatic encephalopathy : My dad has... - British Liver Trust

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Hepatic encephalopathy

HH21 profile image

My dad has decompensated liver disease and is awaiting a liver transplant. He is currently in hospital due to a serious gallbladder infection and internal bleeds. He has acities and had an abdominal tap placed Saturday. The medical team appear pleased that there is some progress with this. Today we have been told he has hepatic encephalopathy. It’s been a very tough and scary day as dads personality, moods and aggressiveness have been extremely out of character. My question today is how long is this episode of HE going to last? has anyone got any experience of it? does anyone know any ways we can help support him because at the moment it’s really awful to see him so distressed and confused? 😢💔😢

Thank you in advance

LT

11 Replies

Hi HH21 LT

I’m sorry to hear that your dad is in hospital. I can see from your post a couple of years ago that this has been a long journey for you both unfortunately.

HE is not a nice thing at all - speaking from personal experience and many Hospital stays as a result. The thing is it is more scary for the carer - you - than it is for the patient. If the Hospital know what the problem is and how to treat it then he should be fine.

From my experience HE exhibits itself at many levels - some times you have just brain fog (most of the time actually), sometimes you can’t remember how to even work a telephone or the remote control, sometimes you are aggressive, sometimes you refuse to be helped, sometimes you are more or less comatose. The more serious of these you just won’t remember and the less serious of these you don’t even realise that you are in that state.

I would say my average hospital stay was about four days.

I’m sure your dad will now be given the right medication to minimise the number and severity of HE episodes he has 🤞🤞.

Please just be there for him, and make sure he takes his medication! I wasn’t always good at remembering whether I’d even had it or not...

As you know it’s a long and winding road but hopefully sometime soon he will get his Transplant. I can honestly say I have had a second life since mine in 2018 and the only after effects of HE for me has been a poor memory - well a poor-er memory!

Here’s hoping everything goes well for you and your Dad, I’m sure it will.

Miles

HH21 profile image
HH21 in reply to ThreeSmiles

Thank you so much for your reply, it’s reassuring to hear your journey and experiences. It’s really hard to see him like this and he can’t work his phone which is so frustrating for him and hard for us as it limits our contact. He’s in kings hospital, London and they are amazing. We just want him to get better. It’s been hard to tell when the HE episode started as he went in hospital a week ago but was on high pain medication which made him confused and sleepy. Yesterday they started him on lactalose and confirmed the HE. X

Hi,

I am so sorry that you are going through this. I completely second what ThreeSmiles has said, my mum often does not remember anything from a HE episode and it is much more difficult for family members than it is the patient. My best advice to you is to trust the medical professionals, they treat people with HE and other conditions which make people act out of character regularly. Don’t feel embarrassed about it (I would dread ringing the ward incase my mum had said/done something but now that doesn’t phase me at all as I know the staff are always understanding). Also, try not to take anything your Dad says or does personally when in a HE episode. My mum can become quite verbally abusive but she doesn’t actually mean the things she is saying.

Again, similarly to ThreeSmiles, my mums HE episodes average at around 4-5 days. She had one episode which escalated to the most serious grade and she was in a sleep-like state for around a week and that was the longest. Once the hospital are treating it, things should start to get better over a couple of days.

Thinking of you and hoping your dad will recover quickly. X

HH21 profile image
HH21 in reply to AlexJ91

Hey thank you for sharing that, my mum is finding it really hard as she’s taking the brunt of dads personality change and aggressiveness which is not his nature at all. It is important like you say to remember they don’t mean what they say but it’s hard sometimes especially when we are all so worried about him x

AyrshireK profile image
AyrshireK in reply to HH21

If you've not already seen it, the BLT has an excellent page and a HE passport which you can obtain from the website. britishlivertrust.org.uk/in... not surprising Dad has developed HE in hospital if he's been given any sort of pain killer which has caused him to become constipated. When you have liver disease at this level you need to go to the loo 3-4 times a day to get rid of toxins. Being in hospital (especially Kings) he's in the right place to get sorted out.

All the best, Katie

p.s. hopefully he's going to jump up that t/p list as soon as the infection he currently has in under control.

Trust10 profile image
Trust10Administrator

Hi HH21, I can see that you have received some support from other forum members - I'll attach some information which you may find useful. I'm sorry that your dad is unwell, HE can be very distressing for family

britishlivertrust.org.uk/in...

s4p4i5g5.rocketcdn.me/wp-co...

Take care,

Trust10

I am still awaiting transplant myself

I had HE in 2017 a few months prior to my transplant.Now, 4 years later I have short term memory issues. Do others have the same?

ThreeSmiles profile image
ThreeSmiles in reply to Fishwick

Hi Fishwick

I had some very bad HE episodes about two and a half years ago pre my TP and I can concur my short term memory is terrible. It certainly isn’t getting better unfortunately and I know of others with similar problems. I think, regrettably, it’s something we just have to live with...

Still, at least I don’t try and brush my teeth with shaving foam any more 😀👍.

Miles

These are my personal beliefs and opinions.

I have been harping on about HE and the lack of medical care for some time now. Procedural changes are always slow to come about in medical circles. Many people suffer similar mental health issues when it comes to HE. My personal experiences were primarily one of frustration, being angry, confusion, and lack of memory. I often use a video featuring Charlie Hobson and his wife Angie, who talk of their experiences of HE: youtu.be/LdWhPUIWt1I Some people on here may well know of Charlie.

I am trying to bring about a change in the way HE is dealt with. The name “Hepatic Encephalopathy” being two words that can be broken down to mean the following. “Encephalopathy” meaning, “damage or disease that affects the brain” and “Hepatic” meaning, “of the liver”. So, the name of this condition means brain damage or disease that is caused by the liver.

When a person first goes and sees their doctor with symptoms, the doctor will see this as being a liver condition and will most likely prescribe medication such as Lactulose, Rifaximin and Neomycin. These will help to prevent further damage. What isn’t always dealt with is the amount of damage that’s already been caused to the brain. For some time now, there has been a scoring system available to GP’s know as the “Westhaven Score”: nice.org.uk/guidance/ta337/...

Here the severity of the HE is graded and indicates the amount of damage being done to the brain.

So, why is this important and why the need for change? Firstly from the grading picture, it can be seen that even at Grade 1 a person may become a danger to themselves and others if they were to continue to drive. There have been cases of people driving down the wrong side of the road on a motorway. So, if a person was to be graded as being a Grade 1, then the DVLA should be informed. It should also be mentioned here that if a person was to ignore this warning and continue to drive, then their motor insurance would no longer be valid.

The other change I’d like to see implemented is that if a person was to be assessed as being a Grade 2, then serious consideration should be given to award a partner, carer, or close relative power of attorney over the patient.

There was a very sad case on this site a while ago, and while not wishing to break any confidentiality I shall not mention any names. The basic outline of this story concerns a man who was living alone at the time. He had separated from his wife and children due to his unpredictable behaviour with HE. One evening he suffered from a variceal bleed and having an HP episode at the same time. Just by chance, his ex-wife had called round to just check up on him. She called an ambulance. But because of the HE episode, he refused medical treatment and refused to go to the hospital, as he could see that anything was wrong. The ambulance crew left and sadly that night this man died.

Using that story as an example. Had this man’s condition been Graded, then a greater understanding of the severity of his mental condition could have been assessed. If at the Grade 2 assessment a person was to be advised to appoint in this case his ex-wife “power of attorney”. She could have insisted upon medical treatment and that man may well have received the treatment he needed.

Hepatic Encephalopathy needs to be seen as being a mental health condition as well as a liver disorder.

Lastly, I would mention that we are all different. HE isn’t an exact science and people suffer differently. Simply having a liver transplant will not repair the brain damage. This damage can be permanent, but some people can recover as the brain can remap itself.

Five years post-transplant I still suffer from brain fog, confusion and issues when it comes to writing.

For those who are interested in this stuff, there is an interesting article here relating to Altzimers Type II: meridian.allenpress.com/apl...

Best Wishes

Richard.

HE grading, West Haven Score
HH21 profile image
HH21 in reply to Richard-Allen

Thank you for your reply, that’s very interesting. It is a very scary condition

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