HE Episodes

[Bs1524]

Following on from post about my husband and his confusion and the GP coming out on Friday. Well he called this morning to see how things are I explained that despite upping the lactulose he still isn’t going to the loo as much as we would like and still has confusion and he fell again yesterday morning.

The GP said well we could refer him to hospital so I asked what will they do in the hospital that we aren’t doing at home and he said he didn’t know.

Would the hospital carry out anything different to ease his confusion I do know whether to push to have him go to hospital given the GP felt that hospital was not safe for him.

I am very confused myself now it shouldn’t be up to me.

[Hidden]

Hi,

The decision to admit your husband into hospital should be a clinical one, and the GP is responsible for deciding and explaining matters to you.

If your husband does go into hospital, they may be able to further assess his HE, and treat accordingly.

Of course all of this will be weighed up against any risk of possible transmission of Covid-19.

Can you perhaps contact the liver specialist to get some additional clarification or guidance from them?

Best wishes

Trust1

[Splodge60 in reply to Hidden]

Hi everyone

HE is really hard to live with. I have never, in my whole life, had normal bowel movements. I was diagnosed with Cirrhosis last April and Diverticulosis last Dec. I have (or had ) polyps!!!!i had never heard of HE until April last year when the Liver man rang me to tell me I had it then. Recent blood tests recorded abnormal ammonia levels only at the beginning of this March. My liver man was on holiday (again) so his junior left a phone message, through a secretary, for me to go straight to MAU. I refused at the time, can’t remember why now. Liver man phoned me 3 days later (after coming back from his hols) to say his junior was just being over enthusiastic. He (again) was patronising toward me and said not to worry. I am on Lactulose and Rifamixin. My bum is incredibly sore. My tummy is swollen and painful all the time. I take this stuff because I am trying to help myself according to what they tell me. My HE episodes are very frequent but I do not wish to go in hospital and for what good reason should I go??? Nothing they have done so far has helped me.

I just have one question for Forum members?????

If you have had HE diagnosed for one year and many other liver symptoms of Decompensated is this then regarded as Decompensated or Compensated Cirrhosis. He gives no info on stages etc. Liver man would not give me an answer???? He told me that, contrary to my suspicions, I do not have Ascites. I already know I don’t have jaundice. This has all happened in the last week. I do not intend to see or speak with him or anyone else about my liver, ever again. I am too tired to cope with anymore rubbish from them. Anyway they have more important things than me to deal with now.

[Laura009]

Hi Pam l guess if he is in hospital they will be able to monitor the HE themselves and adjust the lactulose and administer other drugs as and when necessary. I would imagine you may not be able to visit under the current cv19 circumstances. But if it were me l would be taking the doc up on his suggestion and get him in

Good luck

L x

[Bs1524 in reply to Laura009]

I Laura

He didn’t actually say he wanted him to go it was a wish washy well we could do that but he is against it as he feels it will be putting Kevin at risk. Wha worries me is that he didn’t know what else the hospital could do he is having blood taken tomorrow morning though.

Pam x

[ThreeSmiles in reply to Bs1524]

Of course the Hospital can do more than you can do at home and your doctor should know some of it! Trust1 is right though your Hepatolgist should he giving you advice...

Just from my experience:- after the first two serious episodes of HE I was admitted for - the ones where you go completely dollaly if not quite in a coma - I was told to bypass - sorry my wife was told - to bypass the GP and A&E and come straight round to Medical Assessment where they would know what to do immediately. And they did but I don’t know what they did for obvious reasons but it almost invariably worked. When it didn’t an enema was forthcoming..... That fixed the last few dregs of HE - funny how I remember that 😀.

I presume your husband is already on Rifaximin - very expensive but is given when things get bad...

Hope things get better for you both - soon.

[Bs1524 in reply to ThreeSmiles]

Hi, he isn’t as bad as you describe more a bit dotty or forgetful. He is on Rifaximin but the Heptologist had asked us to cut the Lactulose down 15ml and that I think has been the problem. The falling Is more to do with needing two new knees which obviously have gone to the bottom of the list. Before reading the Lactulose he was suffering from diarrhoea it no HE.

I am now more concerned at the doctor not wanting to take responsibility for Kevin’s treatment and keeps saying he is on the list and I keep using no he is being referred for assessment for list.

[ThreeSmiles in reply to Bs1524]

Tbh Bs I haven’t experienced being asked to reduce the lactulose I just had to keep increasing it and increasing it to try and achieve the 3/4 times a day target. I thought you said that was what you are doing?

I never really talked to my GP once I got to be seeing the Hepatologist regularly PLUS seeing a Consultant every day I was in the Liver Ward. You sure do get loads of attention once you’re in there!

In the end I got prescribed home self administering enemas - your husband hopefully will never have to go there - not recommended!!

Have you got a date for the Assessment yet.

Miles

[Bs1524 in reply to ThreeSmiles]

No date yet for assessment not sure if the virus situation with delay that. Oddly enough I have a diy enema from when he was booked for his colonoscopy we were given the enema then given the drink to have. So it is just sitting there.....

[ThreeSmiles in reply to Bs1524]

Keep that enema handy then Bs!

[Bs1524 in reply to ThreeSmiles]

Do worry it is 😂

[Hidden in reply to Bs1524]

I was virtually the same as miles, lactulose 3/4 times a Day, boy I hated that stuff....lol. Anyway I was in and out of hospital like a yo-yo, then I had my PIP assessment and the guy told me he had worked around people with liver problems. He then told me to drink as much water as I could each day and I never went back into hospital again for HE. I also used a enema every now and then at home. I hope that helps

Thx Lenny

[ThreeSmiles in reply to Hidden]

Hi Lenny

I was told quite early on to drink at least 2.5 litres of water a day - I aimed for 3 litres and I nearly always made it. It may have helped but it didn’t halt 😑. But that isn’t to say what you have said is not totally valid - because it obviously is 👍 - essential I would say!

Miles

[IPCN in reply to Bs1524]

When the HE is worsening and bowels not as regular as required advice is usually always to increase lactulose until this happens. My hubby is 2 years post transplant and suffered HE beforehand, my opinion is this is the worst symptom (he doesn’t agree, the fluid build up was his worst, but then he doesn’t remember the details!). I always kept him at home as I thought his confusion would worsen in hospital plus I am a nurse so managed to do this, but it was heartbreakingly difficult at the time. You are in an even more difficult position due to the current Covid-19 situation and your husband’s physical mobility problems due to his knees. Trust your instinct but push for help/admission if you need plus ask about increasing dose of lactulose, enemas etc as and when required. Take care, thinking of you at this time. X

[Bs1524 in reply to IPCN]

I have had to be a bit stern with him and nowI am pouring Lactulose down him at regular intervals. He “been” since Saturday doesn’t help that he cannot move around to get things going.

[IPCN in reply to Bs1524]

You’re doing all the right things, he’s so lucky to have you. With the added complications you have with his mobility sounds like he may need hospitalisation. Regarding infection control, he will be nursed in an ‘unaffected’ ward hopefully and admitted via a green route as long as he has no Covid symptoms. As with everything there is a risk but as long as vigilance and droplet precautions maintained the risks are greatly reduced. We’re in a crisis but this doesn’t stop the need for hospital care. And yes you do have to be stern with him, it’s so worth it in the end. It is hard though as I’m sure everyone who has had it or nursed it can testify.

[ThreeSmiles in reply to IPCN]

Hi IPCN

I totally agree that HE is the worst symptom. Terrible - and can, did for me and others, affect your memory - long term... 🙁.

I was always on a drip in Hospital with HE - which I saw when I became cognizant (or cognisant 😀) . This was part of whatever else they did to get me back to “normality” in a relatively short number of days.

Miles

[Bs1524 in reply to ThreeSmiles]

Update, sorry if TMI but he has just spent a very long time in the bathroom so it looks like the lactulose is having the desired effect. I guess it will take a while to work out the right amount to keep things moving.

We know from the MRI that there is some damage to his brain from the drinking his speech is slower and a bit slurred sounding I guess that is permanent.

Pam x

[ThreeSmiles in reply to Bs1524]

Hey up again Bs

My MRI brain scan showed I had Neurovascular disease. I chose to think it was HE and not alcohol that caused the funny white fluffy bits 😐. But what do I know and no-one said.

My speech and slurry speech has recovered completely - after my TP. Memory is still rubbish and I can’t even read a book 👎.

🤞🤞that your husband gets back to be as good as I am now or even more 🤞🤞🤞🤞that he gets to be even better than me .

Miles

[Bs1524 in reply to ThreeSmiles]

Thanks I am crossing everything too x

[IPCN in reply to Bs1524]

Glad to hear the lactulose working. I remember being obsessed with bowel movements! As a nurse it’s never TMI and it’s so important. Just wanted to reassure you like Miles that things do improve. My husband says he has a vague recollection of that time and knows it was not pleasant but fully recovered post transplant and now 2 years on is probably sharper than ever. There is light at the end of the tunnel, hang in in there at this most difficult time. Xx

[Bs1524 in reply to IPCN]

Thank you so much I really don’t know how I would have coped without you all certainly no one explained things when he was first diagnosed x

[Witcat in reply to Bs1524]

I wish I had found this site earlier when my husband was going through this.

Unfortunately I didn't and for many months we just didn't understand very much of what was going on and why.

Anyway he had episodes of HE where he was admitted to hospital and he was put onto a drip. Eventually he was on 20ml of lactulose, 4 enemas a day along with rifaxamin but the drug that made an incredible difference was called L-Ornithine L-asparat. The doctors shortened it to Lola.

It is granules and you dilute it with water and drink it.

Many of the doctors and nurses on the local liver ward had never heard of it but this is what made all the difference with HE for my husband.

It might not be the route to go for everyone but I thought I would share because I don't see anyone mention this drug and just maybe if HE is severe it is something to ask about.

[Bs1524 in reply to Witcat]

Thanks for the information. I do he batter for the both now.

[ThreeSmiles in reply to Witcat]

Hi wit

I have never ever heard of that! Where do you live - approximately of course? Or maybe better what Trust do you come under, please?

[Bs1524 in reply to ThreeSmiles]

I have found it but you need a prescription to buy it. I may as the gp but I think he will want to pass on to consultant who we are not due to see now he has or is referring to transplant assessment team.

[Witcat in reply to ThreeSmiles]

Hi ThreeSmiles, I am in Scotland. It was suggested at the Liver Unit. Our GP couldn't supply on prescription and it had to be prescribed by our local hospital QEUH. They then gave a letter to our GP outlined how they would get this going forward.

It really did make all the difference.

So worthwhile keeping it in mind.

As I say our local medical staff hadn't heard of it either.

Hope you are well and keeping safe 😷

[ThreeSmiles in reply to Witcat]

Thanks Wit. It is interesting how different Hospitals use different approaches - which is a shame really 👎. Maybe one day...........

[Bs1524 in reply to Laura009]

Hi Laura he never actually offered it a was more well there is hospital but let’s do blood tests. I asked him what they could do in hospital and he said he didn’t know so I was not filled with confidence he also said he felt he was safer at home then in hospital. I now think he took too many Zopiclone as now that I control them he is improving.

The transplant assessment cannot come too soon for me. x