Severe HE on top of everything else! - British Liver Trust

British Liver Trust

31,454 members15,959 posts

Severe HE on top of everything else!

Lils2019 profile image
11 Replies

Evening all,

So on top of everything else husband has going on, he now has severe HE too.

Went to see him tonight as I do every night, last night I noticed he was a little confused, and he told me he had eaten his tea, when he hadn’t. I did mention it to the nurse who agreed he was a little out of sorts.

Roll on to tonight, he was absolutely awful, nurse said he had got out of bed unattended last night, the bed has rails on it so god knows how he managed it, he should not be doing that in case he falls, it took a few nurses to get him back to bed, then he tried again, so they’ve had to resort to a mattress on the floor with a mattress next to it so he doesn’t hurt himself. He wasn’t making much sense at all tonight, didn’t know where he was, and why he was there, yelling he wanted to get up, ripped his oxygen off 4 times, nurses struggled to get it back on. He had been refusing the lactulose but they gave him an enema today, so hopefully that will start to work and ease the confusion, he’s like someone with dementia. He had been up all night, and has been sleeping most of today. It’s absolutely heartbreaking to endure.

11 Replies
Richard-Allen profile image
Richard-Allen

Hello Lils, a couple of questions if you don't mind. Is your husband in a gastro ward at a local hospital or in a major liver unit hospital?

Most of the treatment available for HE is poor at the moment. The medication is used merely to prevent further brain damage by reducing the amount of ammonia. There is no cure for the brain damage that has already been created.

Alzheimer's type II astrocyte is present in HE (not to be confused with Alzheimer’s). The astrocytes are specialised glial cells in the brain. They become damaged by the ammonia and no longer function as they are meant to. They can regenerate but research into HE and astrocytes is still very much ongoing.

If HE is treated early enough, the brain can rewire itself and the person can regain near-normal brain function. However, some people can suffer long-term brain damage even after a liver transplant.

The hospital should engage a DoLS order (Deprivation of Liberty Safeguards): dgt.nhs.uk/patients-and-vis... This is to prevent him from making irrational decisions like refusing medical treatment and preventing any possible self-harm.

He really is in the best place. He is getting the help he needs, so try not to worry.

Best Wishes to you both

Richard

Lils2019 profile image
Lils2019 in reply to Richard-Allen

Thank you for replying Richard, that is very helpful.

He is in a hospital on a ward that deals with liver issues and the Doctors from the Gastro/liver team see him daily, it’s also where the specialist liver nurses are based.

Its a really good hospital with brilliant Doctors and nurses, he was transferred from our local one, to there as that’s where the Liver team are based.

He has had a DOLs previously, so that may well be necessary.

I am hoping he will be a little less confused when I go in tomorrow.

Madmog profile image
Madmog in reply to Richard-Allen

I have HE, cirrhosis and a fatty liver. Until a year ago I had regular scans and endoscopies. I have had several stays in hospital as a result of falls and confusion. I have now been informed that the doctors cannot do anything else and have discharged me. I am extremely upset and angry. What can I do?

AyrshireK profile image
AyrshireK in reply to Madmog

Hello Madmog, did doctor explain why they can no longer treat you? I can't think why they can just stop at least giving you basic care - the NICE guidelines for monitoring cirrhosis state you should have at minimum a 6 monthly ultrasound scan, 6 monthly bloods and for portal hypertension a regular endoscopy (though this can vary in regularity).

I don't know your age or whether you have other underlying health factors but was transplant ever explored as a treatment option? Have you ever been referred to a transplant hospital for assessment of your situation? Sadly there are some situations where transplant isn't a viable option or you have contraindications to this being an option (apologies if that's your situation). If you have never been seen at a t/p clinic and think you may be eligible I wouldn't just accept the medical discharge but would push to be referred for a second opinion.

I know that in Lils case her husband has been assessed and sadly has been deemed unable to have a transplant so they are just soldiering on with his declining health.

If there is no further treatment options open then discussions should take place about care going forward if that means at some point palliative care options then they should be put in place - not just you being discharged. (I take it you have been fully compliant with all medical appointments and guidance given by your medical team? I know that in some cases if a patient isn't compliant they can say "you are on your own" sort of thing as there is nothing they can do if the patient isn't upholding their side of the deal).

The British Liver Trust does have a guide about planning for the future in advanced liver disease which might give you some useful pointers. britishlivertrust.org.uk/in...

Katie

Madmog profile image
Madmog in reply to AyrshireK

Thank you for that. I will tackle the doctor's secretary again tomorrow. The consultant laughed when I mentioned liver transplants.

I am 70, a non-drinker, female and diabetic.

AyrshireK profile image
AyrshireK in reply to Madmog

It may be your age plus the insulin treated diabetes which has caused him to scoff at possible transplant BUT whilst age does come into play there is no automatic age cut off. That's where t/p assessment comes in - because they determine (1) do you need t/p and (2) are you fit enough/well enough to undergo t/p. Only a multi-disciplinary team at t/p unit can assess that UNLESS you have issues which absolutely contraindicate t/p.

Richard-Allen profile image
Richard-Allen in reply to Madmog

I don't wish to steal Lils thread here, so please excuse me Lils.

I'm sorry to hear about your situation Madmog.

Looking back on your previous post (some 9-years ago) you said you had taken it upon yourself to stop taking Metformin. This is a must-have drug to help control your diabetes. Are you now taking it again?

Like Katie has asked, are there any other health conditions? Are you by any chance over weight, or have any heart troubles. There are a number of reasons why further treatment might not be suitable at this time. So some more information would be needed before anyone could offer any further advice or support.

Richard.

Madmog profile image
Madmog in reply to Richard-Allen

I am on slow release Metformin which is fine now. I am a bit overweight.

Dogbot profile image
Dogbot

Hi Lils when I was in kings College Hospital I had a spell of HE my wife came to see me every day she traveled for over an hour on the train to see me, but this one time as soon as she got there I picked an argument and told her to go home, ,,,,,,,,, she did was I sorry 🤣but the HE is a terrible thing to suffer with because you believe everything in your head is right. I unplugged all my drips and pulled out my NG tube got myself in my wheelchair got to the nurses station and told them I was going home and someone was coming to meet me at the front door 🙈. Bless the nurses she stopped what she was doing (and it was probably important) and took me all the way to the front door which was right through the hospital and King is a big hospital. She chatted with the security guard and in the end said to me shall we go back now. They had to put all the tubes and drips back in, they put me on some medication and I’m fine now, I think what I’m trying to say is it’s a rough time for both of you but you can come out the other side fine. Good luck to both of you 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

MrHappy1024 profile image
MrHappy1024

At our local hospital, they "alarm" the beds, so if people gets up their bed will sound a horrible siren and notify the staff.

Unfortunately this wakes everyone up including the other patients on the ward and quite often it goes off throughout the night as the patient repeatedly tries to get out of bed. None sleeps that night!

Alternately they appoint a "special" to monitor the patient to make sure they don't get up. They also feed, bathe and help them go to the loo (usually in a nappy), it is soul destroying.

I have seen some really tragic and heartbreaking cases where people get confused and can no longer tell where they are.

One man's wife left him in hopital for more than 6 months and he wasn't discharged, he just wanted to go home, he was so homesick during his lucid moments, he wanted to live his last months at home. (As soon as she left from visiting it would put him in a negative mood and he would later become violent)

Sometimes the nurses took advantage of him, instead of feeding his pills to him one at a time, they shoved them all down his throat at the same time, his wife has already said he can only handle one at a time. Other times they mix them in his food, to make him take them, he gets furious at them treating him like an idiot and he starts to lash out, they have to restrain him, heart breaking to see.

I have seen nurses deliberately trigger him and when he lashes out, they call for help, making out as if he is to blame. Not all nurses can be kind and gentle and chat with the patient, some don't have the temperament.

I can't stand that sort of behaviour, so I often speak out when it happens, and get the nurses who do that changed, for the most part the nurses are wonderful, unfortunately there are occassionally bad apples on the tree.

I am usually in the hospital as an "independent" which means I can mostly still function for myself and the nurses and staff really appreciate that, less work, unfortunately I have had 3 episodes in the past where I have gone a bit "confused", one of them I had been reading a particular book, started dreaming, felt like I was in a nightmare and I couldn't break out of it, my distrust grew and long story short, I was all set to dive out the window on the third floor.

I was convinced I could fly...fortunately at the last minute I woke up. Very scary!

I won't go into the other 3, but they were more embarassing than anything else, lets just say, I had a vague memory of what I had done and went around apologising, several days later.

I think one of the things about being "independent" and getting confused, is people don't pay attention to you, if someone had, perhaps I wouldn't have been thinking of going flying.

But, I like being independent and free and I just want to go home, when I am in the hospital.

BritishLiverTrust3 profile image
BritishLiverTrust3Administrator

Dear Lils2019,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holiday

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

The next HE group is running on Friday the 14th of October at 12 noon.

Best wishes

British Liver Trust

You may also like...