Living with someone with Hepatic Enephalopathy (HE)

[ExpectoPatronum007]

My dad is suffering from HE. The ‘episodes’ associated with HE are very hard to live with. I’ve joined this group for support or advice from those going through the same thing. If anyone has any advice, tips or experiences I’d be grateful to hear and listen.

[Hidden]

Welcome. I'm newish but haven't experienced that stage yet. Hope to avoid🙏. Others will b online soon. Good luck.

[ExpectoPatronum007 in reply to Hidden]

Thank you and good luck to you!

[LAJ123]

Hi,

I had my liver transplant in March 2016 following a relatively short illness of just 14 months. Of all of the various symptoms, for me the most difficult to deal with was the hepatic encephalopathy. During a one year period, mostly with HE, I spent a total of 80 nights, usually in blocks of 8 - 10 nights. Eventually, with the right medication, diet and care from health professionals (and my wife) this was reduced to no admissions for the two months prior to my transplant.

For me the experience was just confusion and a lot of bewilderment as in my mind, I was fine and it was everyone else who had a problem. Eventually I accepted that sometimes I wasn't the best judge of when I was beginning to have an 'episode.' My partner, now wife was the best person to make the decision when it was time to go to accident and emergency where they knew me well and would admit me to a ward until the episode was over. I was fortunate as no health professional ever made me feel that either, it wasn't real or importantly it wasn't 'my own fault' as my liver disease was alcohol related.

My advice is to have a talk with your dad when he is well and open to suggestions. Ask him to understand that there might be times when he will find it hard to accept that he needs help, but he has to trust you and agree to go along with getting the right help. For me this meant not arguing with ambulance paramedics and saying it was all a big mistake. It also meant taking the prescribed medication, as with the HE sometimes I would be convinced that I didn't need medication. I actually pretended to take the tablets and hid them or flushed them away.

Everyone is different but for me, the early signs were; seeming distant, absent minded, very quiet, then argumentative and angry without reason, my handwriting became like a spider walking over a piece of paper, no concentration, shaky and finally, irresponsible and I've still got the parking tickets to prove it. Eventually of course, I had to stop driving.

When he is well, you can introduce your dad to the British Liver Trust website where he can read about liver disease in general and specifically about HE. There is a link to the Norgine / British Liver Trust 'HE Passport' which wasn't available for me but others find it very useful.

britishlivertrust.org.uk/he...

There are others here who know from experience about living with liver disease and HE, I know they will be happy to advise and support you and your father.

Take care,

Jim

[ExpectoPatronum007 in reply to LAJ123]

Thank you. I will take a look at that link.

[ThreeSmiles in reply to LAJ123]

Great info Jim 👍

Just to add a little from my experiences....

My HE episodes always always happened at night so I never would drive in the middle of or recovering from an HE episode - very fortunately. Yes I do know that even when not in the middle of an episode we all go a bit noo naahy but not bad enough, in my case, to stop me driving. Oddly, I was never told not to drive after any HE episode resulting in a Hospital visit. It was only at the TP Assessment we were told categorically not to drive if we were having HE episodes. I dread to think, looking back, what the insurance implications would have been if I had had an accident 👎🏻. (Well I know what they would have been 👎🏻👎🏻)

The other thing was that, for me, once the Hospital recognised I was having an HE episode they could get me recovered in about 3 days usually. I can’t remember precisely what they did of course but I’m sure it included an enema or two ☹️. In the end I was prescribed self administered enemas. They worked amazingly well as “all” 😁 I had to do was use them if I hadn’t been to the loo for a day. I never had an episode after I got those. And yes I was on as max dose of lactulose as I could manage and Rifaximin.

Angus

[ScotKat3]

Hi, my dad suffers with HE. We don't live together, usually that makes things a little easier for me, but it can be harder at times.

Has your dad suffered with this long? The effects of HE are brutal for everyone I think, and there isn't enough understanding in public about it.

Please don't suffer alone though, make use of friends and family who can support you both, make sure you have some time to yourself and definitely make use of this forum, there are some fantastic people on here.

[ExpectoPatronum007 in reply to ScotKat3]

He was diagnosed with it a couple months ago but had symptoms for a while before that.

Thank you.

[ScotKat3 in reply to ExpectoPatronum007]

I would definitely second what Jim said about your dad accepting the ways in which HE can effect him. It must be difficult to do that but I think it can make a big difference.

The trust helpline has also been a great help to me.

[Xenom0rph]

Could someone please what a "typical" episode of HE would feel like to them and what might anyone witnessing it see?

I'm not sure if I've experienced an episode as I have suffered from bad sleep and sleep paralysis most of my life, having taught myself that if I move a finger or lightly shake my head I will snap out if it as it told my brain and my body that I had control.

After being diagnosed with my liver problems and associated issues (varices in throat, cirrohsis, portal hypertension) I'm always learning but I'd appreciate some views or thoughts from those that suffer and those that suffer in support.

[alfredthegreat in reply to Xenom0rph]

Hi Xen. It can be very different between people having the attacks .If it's a slight attack the sufferer might be aware that they are a bit confused. If it's more than a slight attack then the sufferer will probably not be aware that there is anything wrong with them and will argue against anyone trying to tell them otherwise. I felt great, absolutely invincible when I had my attacks of HE. Had no idea that anything was wrong. Wife gave me some soup and I tried to eat the bowl. I thought that the hallway was the bathroom. In fact I was in a state of Euphoria according to my wife. If all of a sudden you can't operate your mobile phone or your TV control it could possibly be HE, but by that time you will probably quite unaware of the fact that you are suffering from it. It's usually your family or carer that realises that something is not right. All the best. Alf

[Xenom0rph in reply to alfredthegreat]

Thanks Alf, makes me think i didn't experience this at all but rather the consultant said that what i was feeling was just rapid withdrawl from booze.

[alfredthegreat in reply to Xenom0rph]

It could well be that, It's bound to have an effect on your system. Alf

[ThreeSmiles in reply to Xenom0rph]

Hi xen

I think alf has hit the nail right on the head. In fact he and I suffered very very similar experiences and indeed we ended up having our TPs one day apart yippee 😁👍.

Bad episodes can , if really bad, “damage” your brain/memory as well unfortunately. After “recovering” from one nasty episode I couldn’t even figure out how to tie my shoelaces. I had to relearn that over several weeks. I also remember taking two hours trying to get my belt threaded onto my trousers. I gave up in the end and went to sleep in my chair instead. 😁. Putting shirts on your legs, or trying to, when getting dressed was common for me. Brushing teeth with shaving foam. The examples are endless unfortunately.

Ah well, but please remember these sort of events are during or after very particularly nasty episodes. They aren’t all like that at all.

Angus.