Just joined here as a carer for my husband diagnosed with above Oct 24.
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Hospital has been great but in the throws now of f/up tests... Endoscopy... Fibroscan. Dietitian etc...He is mobile but tottery, suffers with cramps and extreme fatigue and is very muddly.. taking a Multitude of pills. (Alcohol and Cigs now a distant memory thank goodness)
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Awaiting consultant appt to digest all of the above.
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I worry because I don't know what I am facing in the future (short and hopefully longer), I keep being told take one day at a time but that provides no comfort..
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As a carer who is completely inexperienced for this I need some thoughts please
Sorry for the long ramble
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Marlibob
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Hi there and welcome to the forum. Sorry you find yourself in this predicament.
I too have been caring for my husband who was diagnosed with non-alcohol related / auto immune liver cirrhosis back in April 2012. His diagnosis came about literally overnight when he had a massive variceal bleed and was hospitalized for 3 weeks as they got him stable. We have been on the whole journey - initially decompensated with bleeding varices, deranged bloods, portal hypertension, enlarged spleen, low platelets. Had 42 varices banded over a 2 year period.
Listed for transplant in 2014 but delisted after 10 months when he stabilized (following a splenic infarction after treatment of aneurysms). Mild Hepatic Encephalopathy (HE) diagnosis, concentration problems, difficulty staying on task and following instructions etc. Sleep problems, chronic fatigue etc.
We found that life with cirrhosis is like riding a roller coaster, you have got to go with it, there will be up days and there will be down days and you just have to make the most of good ones and write off bad.
From day one i've been by hubbies side, at every appointmend and we've been very much a team. He hasn't the first grasp of his illness so I learned all I could so that when I went along to appointments we could make the most of the allotted time, could ask pertinent questions etc. I learned about the various tests, the various symptoms and it's been me managing all appointments, ordering and chasing up medications and dealing with the illness day to day whilst hubby just got on with living what life he could.
After he was delisted in 2015 we made the most of better days - going on caravan holidays, walking, cycling and making memories.
Sadly, towards the end of last year hubby's health plummeted again with major HE and he ended up being hospitalized not knowing his own date of birth, address, how to dress himself and worse. He was once again listed for transplant in January 2024 and we are eternally grateful that he received his gift of life on 24th June 2024. As we approach 7 month post transplant you wouldn't really know he'd ever been ill - apart from a few residual effects of HE and side effects from post transplant medications.
A few things we've done along the way :- (if you are in the UK) I got hubby onto Personal Independence Payment - quite a battle but you are probably helping him with so many of the descriptors and he'll need addtional help. Being on PIP allows you to claim either Carers Credit (National Insurance paid) or if you are caring 35+ hours a week (which no doubt you will be) you can get Carers Allowance. Other benefits are available but means tested but Citizens Advice or similar organizations should be able to assess your circumstances and see what you are eligible for.
Always keep a notebook for medical appointments and hopefully you will be going along with hubby. Before each clinic make notes - include a list of all medications and doses he'scurrently taking, any symptoms or concerns (no matter how small) and a list of questions you want to ask and make sure you ask them and jot down answers. The BLT website has a section about Questions to ask and more.
If your hubby is up for it get a Power of Attorney in place and that way you can act on hubbies behalf if he gets something like Hepatic Encephalopathy [the muddly(ness) and tottery(ness) you mention are potential symptoms]. This will allow you speak on his behalf with benefits etc. We didn't do this and should have, we also haven't sorted out a joint bank account but should have.
Learn about the condition - the British Liver Trust site is the best - don't Doctor Google. Also, learn what all his medications are and what they are for.
It's possible to live a long life with cirrhosis if it is compensated and the liver doing it's important jobs. I am presuming (since you mention alcohol and cigarettes) that alcohol played a part in your hubbies diagnosis - obviously continued sobriety is key both for giving the liver some healing opportunity but also longevity and IF transplant becomes an option or necessary then sobriety is absolutely essential to even get the opportunity of assessment for transplant.
No question is a silly one so always feel free to ask, there are always folks on here who have been through the same as yourself and we can all give replies based on our personal lived experiences.
To acknowledge ... PIP, Blue Badge all in place. Carers Allowance in system awaiting approval. I have a HUGE folder with all paperwork etc so that goes with us on all appts. I accompany him to everything!!!!. Power of Attorney needs to be discussed .
He is out of the criteria for Transplant options.
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He has just been diagnosed with Barratts Esophagus so my cup filled over🙏...
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I have no support apart from 'Chin up" or "how are you" What's App messages from his siblings (alcohol issues within family dynamics).
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On a positive note we managed a trip to Tesco's yesterday, albeit with lots of stops leaning on the trolley. Small gains take on a whole new joy nowadays!!!.
Other things we've found useful - a RADAR key for disabled toilet access (a couple of pounds on Amazon) and also an Urgent Toilet Need card from Bladder and Bowel UK - very handy if hubby is on lactulose for H.E. or indeed diuretics. Can potentially get you access to staff only toilets and stuff whilst out and about. bbuk.org.uk/just-cant-wait-...
Hello, welcome.I think Katie has covered everything. If things do get too much (some of us know exactly how that feels) remember youre not alone and reach out on here. The carers on here were all unexperienced carers (as you say) at the start. The nurses on the liver trust will also listen.
Being very tired and erratic sleep patterns are part of the illness. Make sure he has small, high protein snacks and small meals through the day and a snack before bed. His liver is fighting to repair itself and needs protein and will take it from his muscles. If he can manage a small walk each day, even just around the house for now, it would help him. Muscle wastage is a problem with liver disease. Count those small wins, it maybe once a week but it will get more frequent. It all takes time and everyone's journey is different.
Hopefully, when all your appointments are done you will know what you are facing. It's hard when you don't know what's in the future. He will then be in the system and they will keep a close eye on him with frequent blood tests and adjusting his meds. I am pleased that you are involved with his appointments, I found jotting down questions in a notebook when they occurred to me really helped. Then writing the answers next to them at appointments was useful. There was so much information that I couldn't remember it all. No question is daft!!! Not when it's concerning someone you love.
In all this do give yourself some time out and look after you too, it's a long journey and you'll need energy and patience for both of you.
I am sorry to hear about your husband's diagnosis. Katie's experience and advice is invaluable. I would add a couple of things as my husband also has decompensated alcohol related liver disease and cannot access a transplant for several reasons. I have no family and my husband's family is abroad and he doesn't want them to know the full details. So I joined the BLT online carers' forum where you can let off steam and share your worries with people who know what you are going through. You can join via the website. Their nurses helpline is also really useful if you have appointments coming up and want to know what questions to ask.When hubby was first decompensated 18 months ago I went through premature grief. Then I went through my 'nagging' era "don't eat so much salt, you shouldn't be eating that, make sure you have your bedtime snack..." But then I realised that he was just getting wound up about it all so now as long as he is sober and happy that is the main thing. We go for a little trip out and a coffee somewhere nice whenever we can and get away when we can. You seem to be well prepared but in all of this, don't forget to look after yourself and do things for you too. Take care.
Thank you to everyone who was contributed valuable insights.
I was diagnosed with DLD after being admitted to hospital is ascites last summer. Prior to that 8 years of PTSD had led me to needing anti-depressants in the form of deloxotine and ever increasing self medication with alcohol, a very harmful and potent combination, especially the alcohol.
Just over a year ago I collapsed and lost consciousness, a pattern that was to continue and worsen over the months ahead prior to hospital. I was told this was due to an issue with my vagus nerve and I was also suffering from silent reflux.
I cut back on alcohol, although it was still way in excess of a healthy amount, and was warned of the dangers of stopping altogether too quickly. But I was at an impasse, still drinking and on my duloxotine and too scared to stop completely following many trips to A&E and my GP.
Eventually a particularly bad fall down a staircase and the quick action taken by my GP took me back to hospital where jaundice and ascites was discovered. I was taken off my anti-depressants immediately and had two drains and many other procedures. I lost 17kg in 3 weeks and the DLD diagnosis was confirmed.
The plus side is without the fall I would have probably carried on stuck in the same behaviour, I had long stopped drinking for any sense of joy or craving, it was part of my daily medicine (poison). At least now I had caught the disease earlier than otherwise and was also finally able to safely stop drinking altogether.
Blood tests and other procedures are and will always be a part of my life going forward, I want to everything in my power to be as healthy as possible and never want my family and friends to have to worry about me in the way they had to last year.
Blood tests have shown improvements, particularly compared to where I was when admitted to hospital but I am still out of range in some areas, particularly Gamma GT. Platelet counts are abnormal and clotting is getting worse, I now suffer nose bleeds and small cuts take longer to scab over.
I am on restricted fluid intake (1500ml per day), no/low salt, limited processed food and obviously no alcohol. I take diuretics, lactulose and omezrapole daily and keep a close eye on my weight remaining stable.
I cook from scratch most days to try to ensure high protein content, calcium and other vitamins and nourishment designed to help avoid muscle wasting, keep bone density and keep my liver as heathy as possible as well as anything that aids my ability to sleep.
Sleep is awful. Initially I was woken by the meds and then struggled to get back to sleep due to peripheral neurotherapy making my feet and lower part of my body very hot and itchy at night.
I am not able to work yet so when the night comes around and I lie awake or wake up after just a short while I no longer fight it as, for the time being, know I may have the opportunity to sleep the following day, often at a random time when my body declares it now needs to sleep! However I do worry longer term about returning to work and what may or may not be feasible as I need the money, need the purpose but will not be able to hold down a senior and stressful executive position as I had done in the past prior to this.
Like many others, the need for nutrition and hunger pangs mean food before bed plus snacks for when I wake during the night.
The other concerning side effect I have had is what I call 'glitching' - my eyesight feels like I am at a strobe lit disco and things I have been looking at start to merge into other images when I turn my gaze in disorientation. I have also lost control of my hand movements on some occasions, or instance whilst trying to eat soup sending the spoon flying across the room and when writing Christmas cards two of them ended up being involuntary screwed up on the floor mid sentence.
I have not yet had the chance to discuss this most recent development with my doctor but after some research I think it may be a form of H.E. especially as I reduced my lactulose unaware that it was also reducing toxins in my brain as well as just keeping me regular. I hope if I go back to daily dosage, however unpleasant the usual side effects, it will keep at bay the far more scary episodes of glitching/H.E.
I am still awaiting a fibroscan so I can get a read on the extent of the cirrhosis and how much I have been able to do to repair my liver. What is done is done but I would like to know how much to read into my future test results.
I will keep on doing all that I can to stay as healthy as possible no matter what. I hope to get the go ahead to return to the gym in some capacity for the obvious benefits of some aerobic activity which may also help with sleep and prevent muscle wastage.
I am still awaiting to see my overall hospital consultant, even though this was meant to have taken place within 6 weeks of my discharge, and hopefully I will get a gym referral then and ask any other questions, although my GP has been excellent in answering my questions and helping me to manage and understand my condition, as well as giving me all important encouragement to carry on as I have been doing.
Thank you for taking the time to read my story and my thoughts and best wishes go out to everyone who is suffering rom this condition, to those caring for them and to all who lover and worry about both the patient and the carers.
I’m also looking to connect with other care givers. My mum age 75 was diagnosed with NAFLD 1 yr and 9 months ago and I’m well aware the average life expectancy is 2 years so feel she’s likely coming to the end in next 3 months but the not knowing is the hardest. She also has lung disease. Has never drank or smoked but very overweight.
The things we have found useful over the last 2 years are accessing the highest rate attendance allowance, disability badge, all the aids- we have stair lift, toilet frame, commode, 2 zimmer frames, wheel chair, a thick compression type pad on her chair now that helps to prevent pressure sores, a hand rail on the door l, bath lift device. She has a cleaner for 2 hours on Tuesday , a care r on a Friday for one hour to help get a bath then home help who is actually a cleaner who comes on Wednesday and Thursday for an hour each time and does dishes and makes her something to eat. She is starting to go off her food a bit but still eating ‘enough’
We pay for a service now that actually come out within the hour to help her get up off the floor with a very superior mangar- this has been well worth the money, prior to this we used our own mangar that was 600 pound second hand but we can’t get her on this now. Prior to this she would be on the floor for 6 hours needing to try and urinate in a tub waiting for the ambulance.
She now has a stay at home plan where she will only go to hospital if she has broken bone or excessive bleeding. When she gets super ill they will order her a hospital bed in quickly as she refuses to have one right now.
Managing her bowel movements is a constant battle to prevent the HE because she either gets constipated or has accidents and refuses to take lactulose because of the accidents so trying to manage it between a half and 1 sachet of movicol !! I am thinking of getting some more home help as she is struggling to do her own dishes and I feel I want a bit more restbite at the weekends.
Have you seen about accessing hospice services for more support? British Liver Trust has a page all about 'Thinking ahead' which might provide some useful pointers. britishlivertrust.org.uk/in...
Having 'nursed' hubby last year through his deterioration with HE etc. I know how hellish this is to cope with. We were fortunate that hubby got a transplant in time which has been transformative but it must be awful to witness and try to cope with this scenario with no light at the end of the tunne.
I can say from being a carer for my mum, make as many memories as you can even if small. You really can feel on your own at times. Hospice care really kicks in when a patient has weeks to live and From our experience they were lovely. You can also access their support services long before entering their end stage, so do contact and see what's avaliable. My mum died at home with hospice at home support and the community nurse team support. It was just myself and my dad most of the time but I will say Mum needed 24 hr company and care so if you are caring on your own see if you can get more support so that you too get rest and time out. The hospice also can provide an overnight sitter so may be an option. If there are things that your loved one wants to do, even sitting out in a park take them, time moves far too quickly so try and make the most of the time they may have left. Xx
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