Greetings,
I am new to the group and am trying to learn more how to support my husband who was diagnosed with liver failure last year. He is really struggling with sleep reversal and I was hoping to pick your brains on how you call deal with it.
Thank you all in advance and wishing you all the best!
My hubby has a terrible sleep pattern though it has gotten better now that he is exercising more during the day. He walks and cycles and it seems to have improved sleep pattern and energy levels.
He previously would feel exhausted all day but on hitting bed it was like ping (wide awake), he'd then struggle to nod off but when he did eventually he would waken after a maximum of 4 hours and then be awake for hours tossing and turning.
Wierdly on the very, very occasional night where he had slept right through he would feel worse and more fatigued all day than on the nights where he'd had broken sleep.
Hubby is prescribed Rifaximin and Lactulose for HE which can contribute to sleep issues.
The BLT website has a page all about sleep management and liver disease which might help. britishlivertrust.org.uk/sl...
Best wishes
Katie
Thank you so so much! My husband is exactly the same. We are trying to figure it out so he can improve his life but also, to figure out how to go back to work. Really appreciate your quick replay and all the best to you and your husband!
My hubby is unable to work sadly - he was a welder in heavy engineering before diagnosis (April 2012) and now he can't concentrate long enough to work, drive, stick to task etc. and he struggles to follow even simple instructions.
There is no way he could possibly return to engineering and sadly can't learn anything new so work is a thing of the past for him. We have been able to claim Employment and Support Allowance (Support Group) and also Personal Independence Payment (Enhanced Daily Living & Basic Rate Mobility) and I am able to claim Carers Allowance because hubby gets PIP.
Katie
I am so sorry to hear that. My husband is in a similar sitution. He won't be able to go back to be an engineer for now. Hopefully that will change once he has his liver transplant. We are hoping to have him back as work which is very simple and hopefully night shift. Thank you so much for all your information and help. Sending you all of my love and thoughts.
Wow Katie, my tradesman was a pipe fitter welder (heating engineer). I bet your hubby misses working with the lads. I hope I don't get complications going back to work. (I feel I could at the moment). I hope you don't mind me asking, how did you get the personal independent payment, I didn't get anything until may (claims wise) which was universal credit. They kept sending me job interviews at KFC and JD sports etc. I was replying I would if I could but you would have to roll me in with the ascites 😂. I bet he's glad to have you Katie 👍
He misses the lads but not the job, staring at an arc all day, freezing in winter, roasting in summer - as an outdoor guy he absolutely hated it but in the NE of England there weren't many opportunities other than an engineering trade at the time he left school. When he came up to Scotland he briefly got work in a small boat yard welding fishing boats, crawling about in tiny spaces and dragging gear about - it's a wonder his varices didn't burst before they did. There is no way with his health as it is that he could return to that trade and even post t/p if that ever comes about.
We had quite a battle for the first PIP award - hubbies condition was hampering him in all sorts of cognitive functioning ways - struggling with instructions, can't figure things out, sleeping a lot, needing wakened for food, even basics like how to work the shower, cooker etc. - he basically ticked the boxes for a lot of the daily living descriptors and needs a fair bit of support and help.
His first face to face assessment was the week before he was assessed and listed for transplant (I think) and he scored zero. The ATOS assessor (a so called nurse) was an absolute horror. She basically said that everything we'd reported was a lie, saying hubby checked himself in for the appointment when I did 'cos he was in the loo litterally sh*tting himself at the time - the joys of lactulose and nerves. Believe it or not she actually accused me of copying and pasting all his hospital letters. She didn't want me to accompany hubby in the room and my god she just wrote a pack of lies on her report. She had made her mind up before we even got there.
I put in the first phase of the appeal (Mandatory Reconsideration) but it got knocked back then we got the help of the local council welfare rights officer who came out to the house, met hubby and I and said she would act for us at appeal tribunal.
She gathered evidence from all hubbies doctors and submitted appeal. At the tribunal she came with us to help present evidence and from zero points hubby got an Enhanced Daily Living award and some points for mobility (but not enough for an award).
As the award was back dated - I think he got 3 years but we were already 2 years in and so the award only had a year to run.
At the second application I used the Benefits and Works member guide for PIP to lay out hubbies difficulties and his amazing consultant wrote a brilliant letter which went through hubbies difficulties as we see them and put a medical explanation as to why he has these i.e. a diagnosis of mild HE etc.
We still had to go to a face to face and the nurse here was brilliant she actually pointed out that hubby was very slow, she actually carried out some tests for cognitive function which the other nurse hadn't and she saw how hubby struggled with instructions.
She awarded even more points for Daily Living and awarded basic mobility too because no way can hubby make a journey unsupported, he'd get lost, fall asleep, be generally vulnerable. He can't find his way round the local hospital to appointments so has to ba accompanied.
Anyway on subsequent renewals i've used Benefits and Work and always basically filled in the forms like someone hasn't read what has gone before, always pointing out where difficulties have continued, got worse etc. and consultant still gives us a letter of support.
It has been a battle, thankfully we seem to have hit a situation where hubbies award now extends beyond his retiral date and so he should continue to get it alongside his pension.
ESA (Support Group) we got on paper with no face to face and it's continued ever since. Basically hubby just isn't fit for work - again I used Benefits & Work website guides to fill in paperwork (apart from at the moment it's a virtual award - NI only - because hubbies Dad died so we now have some savings that take us over the threshold after getting an inheritance).
It was a battle but we couldn't have gone on other wise, with ESA we got Housing and Council Tax Benefit (though we arn't getting these now due to the inheritance and we have to use that to pay our way till it reaches the threshold for starting the UC rollercoaster - hoping we are nearly at hubbies pension age by then), with PIP I have been able to claim Carer's Allowance which has been handy during Covid when I haven't been able to work and unable to get any of the government covid payments due to the nature of my self-employment.
Katie
Jeez aloo Katie, if you don't mind me saying "what a set of shit houses". Specially the first woman who had made her mind up. My mum said to me once (she was watching cooking) "what are you doing you can't hold the pan properly". Me being me I couldn't give up. I didn't even realise that I had HE, I have a really good memory and used to use that to get me by. I was remembering everything just relating them to different discussions and arguments. 🤣, I had to admit I was wrong. 😤. I tried with UC to claim a sickness payment (I mean I've just had a transplant and haven't been able to work for a while) they said " I could operate a phone, I could cook (yeah once a week back then) I could walk more than 50m unaided, I could go to the loo unaded. I felt like saying I wish you were there when I couldn't tell if it was a number 1 or 2. I was trying to get it back dated. No chance, I might get help now I have had a transplant, you can't fake that and this is the problem. When all those people who are faking claims screw things up, when genuine people who are poorly with a condition that they don't properly understand they just dismiss it like you are a benefit cheat....ggrrrrrr, gets your goat Katie when you have worked all your life.I hope your hubby gets his transplant, I know I go on about I well I'm doing, I don't mean to upset anyone but I have been poorly for soooo long it's such a relief. Also I want to try to get some sort of a point across, especially with people who panic.
I reight hope you get some good news soon ☺️.
Hubby doesn't need a transplant just now - they wouldn't do one as he's not poorly enough, doesn't meet the criteria and the risks could outweigh the potential benefits. They've already said it's possible transplant won't get rid of his fatigue.
He's better keeping the health that he has just now (he's got no ascites, varices are all dealt with, not particularly jaundiced or anything) - he's just not 100% right but he lives his best life and has to ride the roller coaster of what each day brings. He's a bit low today, did a 23 mile ride on Sunday which has pushed himself a bit so he's resting up today and has took himself off to bed to recharge batteries.
His next scan is on 10th February and we actually got an appointment through for a face to face consultation at Edinburgh for 28th February so we'll see how that goes.
Keep soldiering on, it's all we can do. I had surgery on my knee on Wednesday so we are grounded at the moment till I get the all clear to drive again (9th February hopefully at my next clinic). I am keeping myself busy doing my physio and attempting to regain my natural walking gait - I haven't been able to fully straighten my leg since October and it turns out I had a broken bit of bone blocking my range of motion. It got taken out on Wednesday during surgery so I am on the road to recovery. 
Katie
Chuffin hell Katie, I'm sending you some love 💌❤️. Rollercoaster and then some. A kid I used to work with had a new knee and refused to take his painkillers, instead of taking them and trying to walk normal he hobbled and put all his weight on the other knee and eventually had to have the other one done🤕. I hope you both have a better day tomorrow...💯🤞
Danny x
One last question Katie, do you ever think your hubbies condition may of been brought on by the breathing in the fumes from welding or working conditions, thrown together with his diet. I know what it was like welding in tight spaces and burning old steal out with oxy acetylene. Fume city trapped inside a boiler house (for me).?Dan
It was a question we asked his doctor at first diagnosis and it was ruled out - even as a potential trigger for his auto immune illness. Hubby did loads of confined space work on bridges components, Canary Wharf stuff, Wembley etc.
There is a liver condition linked mainly with welding exotic metals which hubby has never done. His consultant had worked in South Africa where Health & Safety in industry isn't as stringent as here and in cases of welding related liver disease the patients lungs tend to be knackered first and hubbies are fine - he was an avid long distance walker up to being taken ill (100 mile challenge events and such like so his lungs are A1).
His diet played no part in his liver disease - he was always about 8 1/2 stone, not a peck of fat on his frame and in no way any fatty liver.
All been deemed auto immune - kind of wonder about a long term antibiotic he was on for acne and think it may have been a trigger for drug induced liver injury. We'll never know for sure.
Katie
What a mind bender....I guess this is why you have studied and know the different forms, causes and case's of the disease.Full blown respect 💯😇
Dan x
Katie, you are a wonder and a blessing to your hubby. May a good, warm wind blow your way today!
I see you are really new to the forum so if you've any other questions at any point then just fire away.
My hubby has auto immune cirrhosis and was diagnosed out of the blue in April 2012 after he presented with decompensated cirrhosis symptoms and nearly died of a massive variceal bleed. Over the years he's had 42 varices banded and was assessed and listed for transplant in June 2014. His liver improved sufficiently to get delisted in 2015 and he remains fairly stable to date with fatigue and his minor HE issues being his main symptoms. He has learned that he just has to ride the roller coaster that is life with cirrhosis and he lives every good day to the fullest.
All the best, Katie
Hi Tina, I found that having a walk through the day maybe meeting/talking with family and chatting on this forum. It was a way to keep me occupied trying my hardest to stay awake so I could sleep at night. What stage of decompensated cirrhosis is he?, I only ask because I used to wake up rolling on a stomach full of ascites fluid, agonising leg cramps and stomach shunts.But I've only been on the forum 4 months but suffered for years (not knowing the full extent).
I also tried walking in the evening (our local pharmacy is open while 10pm) and when I got home had some suppa (which is good for stage 4 decompensated) then went to bed watching an old favourite film that I've seen a hundred times, because it doesn't matter if you miss anything!
Good luck with everything 🙂
Danny x
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