Hepatic Encephalopathy : Hi all, I'm... - British Liver Trust

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Hepatic Encephalopathy

Caroll0605
Caroll0605
22 Replies

Hi all, I'm Carol and I care for my husband, Michael who now has decompensated cirrhosis. He recently had a bleed, we don't know where from, but had to have six pints of blood transfused, we were on a cruise ship when it happened so we're landed in Estonia. It went well except he picked up a UTI, which landed him in hospital for 8 days, this caused confusion, but long story short, and we don't know if there is any connection, he now is being treated for HE. I work full time, but have, at the moment a very understanding boss so can leave early etc. I guess what I want to know is, with lactulose and rifaximin, how long does the confusion last, will it improve? The sleepiness as well? I feel quite alone with looking after my husband with this condition.

Thank you for any information.

Carol

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jojokarak

Hiya Carol, sorry to hear about your husband x

Has he had an endoscopy to find out if he has varices? Because they would cause a bleed

As for the rifaximin it works for some for me it didn't work to the point I couldn't be left alone but I hope it works for him

The tiredness is part and parcel unfortunately it never got better for me and even post transplant it's still one of my biggest moans lol

Is he on the transplant list?

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Caroll0605

Hi, he has had two bleeds, two endoscopies in two different countries and neither could find the cause, he has varicose, but small and in both cases did not look as if they had bled? I did find that if I left him on his own he wasn't taking the rifaximin, trouble swallowing it! I now mix it with milk for him to drink-hope it will still work. He is 75 and is not a candidate for transplant.

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Paulwil

HE can often be triggered by an infection or a bleed.

Talking from experience, I had a severe bleed.

I was sedated for three days, when I came around I was very confused for about a week.

I was taking rifaxamin and lactulose also.

Gradually I improved over the next few weeks.

When I was discharged a month after being taken to A&E, I was mentally ok I think.

I hope your husbands HE is brought under control soon.

Paul

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Caroll0605
Caroll0605
in reply to Paulwil

Thank you Paul, he was in hospital last week, but even though I thought he was even more confused than he had been they said he was ok to come home!

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LAJ123

Hi Carol,

Really sorry you're having to deal with such a difficult situation.

Paul is right about the triggers for an episode of hepatic encephalopathy. You need to be watching for any signs of infection, especially abdominal pain. If in doubt get medical advice, assuming you're in the UK, NHS 111 is useful and can if appropriate even arrange for an ambulance.

From my experience, once the Rifaxamin and the lactulose are being taken together and regularly the problems become easier to deal with.

Left to myself, I didn't really understand the need to take the medication, this was entirely due to the very condition it was meant to help. Hepatic encephalopathy is really hard for anyone without personal experience to imagine. The difficulty in swallowing rings a bell for me, in my confusion I decided that the tablets were too big to take, I was hiding them and leading Lucy to believe I was taking them. During a particularly bad hospital admission, as the fog lifted, I had a revelation and realised that the tablets were actually quite important and confessed to my consultant that I was being less than compliant.

After that, my partner, now wife didn't trust me to take them and she made sure the lactulose and Rifaxamin were taken while she watched. This also applied to the prescribed dietary supplements which were hidden in my food. As soon as I was taking all of the medication and supplements exactly as prescribed my condition was vastly improved. As I said, this was my experience and I hope that it will be the same for Michael.

As for feeling alone and a bit helpless, this group is really good for keeping in touch with others in the same boat. If you do feel you need to talk to someone in person, some people here have used the British Liver Trust helpline, they speak highly of the personal support they were able to get from the qualified nurses who work for the Trust. The line is open from 10am in the morning until 2.45pm, Monday to Friday but not bank holidays.

britishlivertrust.org.uk/fi...

I know you are totally dedicated to keeping Michael as well as you possibly can, but please don't forget to take good care of yourself.

Jim

(and Lucy who read this reply before I posted)

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Trust1
Trust1Administrator
in reply to LAJ123

Lovely post- thanks Jim & Lucy.

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Popel

Hi carol sorry to hear about your husband.please don’t feel alone as your posting on a site that a whole lot of people are going through a similar situation or have been through and come out the other side. As far as furusamide is concerned I believe it helped me and I think it helped with the HE but it wasn’t conclusive. My partner never had an outlet as we never found this site until after I’d had a transplant but feel free to DM me.wish you and your husband all the best.paul

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Caroll0605
Caroll0605
in reply to Popel

Hi Paul, thank you the drs have stopped this drug and all his other meds at the moment. Small steps at the moment. I hope you are going on ok post transplant.

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Caroll0605

Hi Jim and Lucy, thank you for your honest reply, now I know he was not taking his tablets I do the same as Lucy did - watch him, even then he hasn’t swallowed them and spat them out - didn’t like the taste, but I didn’t realise swallowing might be an issue, that is really helpful. Food is a huge issue, what dietary supplements did you have? I guess I have to change as well, instead of asking him if he is hungry, just get him food, and he keeps looking for food (not a snacker before) so make sure snacking low protein food is available. The other health issues Mike has is , type 2 Diabetes, insulin dependant and, he had his colon removed 20+ years ago, so has a stoma. So part of my concern is whether the meds will work, or how long it will take as no colon to absorb. I know everyone is different but I guess, for myself I need to know see how long recovery might take - approximately, to keep my sanity. I know with Mike it might take longer?

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LAJ123
LAJ123
in reply to Caroll0605

Good morning Carol,

Hope Michael is well today and I'm glad you found my post helpful. Happy that you've had many supportive posts.

You mentioned low protein food. The issues around food are quite complicated and protein intake is really import. It isn't for me to advise on specific dietary needs for Michael, this is something you should be discussing with your GP or consultant, even better if you have a dietician. My dietary supplement was by prescription only and the dietician told me to not buy anything over the counter or online. As there are other complications around the stoma and diabetes, if you haven't seen a dietician it might be a good idea if you ask your GP / consultant for a referral.

Once again, take care.

Jim

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Caroll0605
Caroll0605
in reply to LAJ123

Hi Jim, Michael seems to be a little improved today, so I have a smiley face on. Your information is really helpful, sometimes it's just knowing what others have tried and where to get information. I am going pop to our surgery to find out if they have a dietician, if not where can I get help from. Especially with Michael, as not having a colon means that a lot of vitamins and nutrients do not get absorbed into his system.

Thanks again.

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davianne

Hi Carol, I am so sad to hear of your situation. We are a very friendly, caring bunch on here, both sufferers and carers, and will give you lots of support, so please try not to feel lonely. Sometimes , a problem shared is a problem halved. I am a cirrhosis suffer F4 Compensated, at the moment, much like Michael was before his bleed. I also have 2 small varices that, so far, have not bled, and am 72 years old, and unlikely to be considered for a transplant unless, my cirrhosis deteriorates considerably. I also have mild HE, but am not on medication for it yet. Please feel free to call on us anytime you like, for support or just a shoulder to cry on as we understand your worries and concerns.

My thought and prayers are with you and Michael,

David

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Caroll0605
Caroll0605
in reply to davianne

Thank you David, good luck.

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Barnetaccounts

Hi Carol,

I am sorry that you’ve felt all alone whilst dealing with a serious issue.

I was diagnosed with HE after a bout of confusion.

I recently had quite a severe HE episode, which landed me in hospital for 9 days.

Imagine my surprise when my consultant informed me that a HE episode is just a manifestation of Liver Failure.

I take my medicines religiously, but lay on my bed just staring at the ceiling talking garbage.

HE should be taken very seriously and medical intervention should be sought at the earliest opportunity. I hope you get things going in the right direction, but you must be vigilant, and react accordingly.

I wish you all the best on your journey through the uncertain world that is Liver Disease.

Ray

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Caroll0605

Thank you Ray.

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Trust1
Trust1Administrator

Hi Carol,

We are sorry to read that your husband has liver disease and HE. If you would like a chat you could call the British Liver Trust helpline on 0800 652 7330 10am to 14.45 We cannot give medication advice but we are nurses and can talk through any concerns you may have.

Warm wishes

Trust1

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Caroll0605
Caroll0605
in reply to Trust1

Thank you

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Willh0

Hi Caroll,

In the past i had extreme HE over about a year in total. I can give you too many personal experiences to mention but it does get easier the longer you are taking the medication. I must have been admitted 8-10 times with the condition. I live alone so that was really difficult as I thought I was doing everything right when I obviously wasn’t. There is hope though. I couldn’t give you my details if my life depended on it at times and it’s especially hard seeing a loved one so helpless at times. Well I’ve been told!!! You can get through this. It can be hard but the 2 of you can do it.

Give the nurses on the forum a call. I can give you a PM with some of my own mental experiences if that would help? The main thing that I can say is that with the medication the confusion fog can and will lift. It just takes some time. As long as he listens to the medical team you can get through it. Just stock up on toilet rolls.

Once the initial shock of all of this has passed as long as you work as a team you can manage it. I just used to have to take people’s word that I was being odd. You will spot the signs of it quickly and are able to deal with it.

If you want any further experience from the patients point of view then drop me a message. The 2 of you can do this!!! It’s scary at times but you can do it. Keep your head up.

Cheers Will

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Caroll0605
Caroll0605
in reply to Willh0

Cheers Will - onward and upward

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TT-2018

Everyone who has experienced HE can recollect the funny part of the condition. But that should not distract from the severity of the illness, it is a serious problem.

You actually believe that things imaginary are real and not just the hallucinations but also the paranoia etc, concerning people around you.

Please follow all the advice given and make sure that your partner follows it.

Hopefully it will be manageable and things will improve as the treatment plan progresses. You also need to look after yourself and take any time that he spends in hospital, as some respite.

I wish you well, going forward.

Mark

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Vincent2004

Hi Carol, sorry for your pain, I developed this whilst being in hospital, it was awful, but it lasted about two weeks with me, hope that assists you in some way, it's so hard just not knowing what to expect. Best of luck huni.

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Caroll0605

Hi, thank you, he is showing some signs of improvement. Just wish he would eat a little more, but I am sure that will come eventually.

Everyone's comments and experiences are so informative, and it really does make it easier. I watch him take his tablets now, and drink the lactulose, and I can see it is making a difference to when I thought he was taking them.....

I have really deep gratitude for everyone's thoughts and comments.

Thanks. Carol

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