Living with someone with Cirrhosis it's hard but must stay optimistic!

[DD75]

A Long story short (difficult) in February 22 I came home to my husband yellow and barely breathing but conscious. Ambulance took him to hospital and he had to be resuscitated twice as his heart stopped before being put on a ventilator he had erupted varices in oesophagus(he'd been losing blood both ends for days but didn't tell me) and blood clot in his portal vein, his liver was/is severely damaged (C something I think) amazingly he pulled through and after a 1st failed attempt at TIPPS the second attempt worked. He left critical care unit in March after a month and was sent home after 3 days on ward.

Initially his prognosis was ok, the consultants even joked asking if he was human as they could not believe he survived. He's now diabetic and has had multiple appointments blood tests scans etc to keep an eye on it. The oesophagal varices have completely gone according to hospital but the clot in his portal vein is stubborn and despite fragmin daily its reducing very very slowly.

The worry is they told him last week if he doesn't change his lifestyle he'll be dead within 2-5 years. When he first came out I fed him healthy I've always fed him healthy but due to nerve damage caused by the Defibrillator to resuscitate him he's in agony and can't sleep properly they cant give him anything other than pregablin because it isnt processed in liver which doesn't seem to work and his diet and structure has gone downhill i try but hes feels sick all the time.He doesn't drink anymore but I have to believe that it will slowly improve if he sticks to a good diet. He exercises everyday walking he drinks water, has prescribed fortisip (his ascites haven't been drained) but sometimes his stomach looks a little less swollen but not much. The hospital are wonderful and they see him fairly regularly he's under different (body part) departments and they take blood regularly.

I'm struggling as to how to help I've researched everything but I can only find depressing results on TIPPS which seems to go against initial consultants view of telling my husband his life would improve with it.

Please please take care of yourselves and thank you for reading.

[Fibro2021]

May I ask if your husband is taking anything to treat hepatic encephalopathy (lactulose, rifaximin)? TIPS can worsen symptoms associated with HE and insomnia/absence of sleep can also be in this series.

[DD75 in reply to Fibro2021]

He's on lactulose 3 times daily. Thank you for replying I really appreciate it.

[Fibro2021 in reply to DD75]

Sometimes with persistent encephalopathy, doctors practice prescribing both drugs at the same time. Perhaps you should to discuss this with your husband's doctor. Also, with the correct dose of lactulose the patient should have 2-3 soft feces (not diarrhea) per day. Therefore, the dose of lactulose needs to be adjusted occasionally.

[DD75 in reply to Fibro2021]

Hi sorry I didn't understand what encephalopathy is excuse my ignorance 🤦‍♀️ I've just asked him about stools though and they're exactly like what hospital want them to be. He has an appointment with full multidisciplince team last week he'd seen individuals separately but when they all came together they were shouting at him. About they could tell his lifestyle diet was poor from his bloods. He was quite shocked by their actions but I'm wondering if they're basically trying to shock him into living better with 2 -5 years prognosis if he doesn't change his lifestyle. Who knows I've forced him to eat health little and often over last few days as he has to have 3 more sets blood samples taken and hopefully thr diet will provide ans show up more proteins he needs but today flu vaccination has knocked him sideways so he's not eating much at all.

Thanks for listening 🙏

[Fibro2021 in reply to DD75]

It's okay, you don't have to apologize. Hepatic encephalopathy is brain damage due to cirrhosis or other diffuse chronic liver disease. Symptoms of encephalopathy can be minimal, ranging from absent-mindedness, impaired concentration, to more noticeable brain fog, hand tremors, and impaired coordination and gait. Sleep disorders are a common symptom of hepatic encephalopathy. This may be at first difficulty falling asleep and daytime sleepiness, earlier awakening early in the morning. Then comes absence of sleep at night. Sometimes the patient may emit a musty smell resembling boiled cabbage or garlic.

[DD75 in reply to Fibro2021]

Hmm he did have terrible memory loss when he came out he'd forget where he lived but this seems to have improved. His memory is still rocky but nowhere near as bad as it was. He's also under critical care psychologist for CCU PTSD he sees her monthly (roughly).

I remember when he'd had TIPPS procedure I looked up about possible delirium and the Critical Care Doctor said he was quite impressed that I knew what they were assessing him for with the psychologist visits whilst he was still on the unit 🤣🤦‍♀️

I hadn't realised though this was an ongoing issue. But as I said his memory has improved alot in terms of forgetting where he lives etc it's still ropey though and I need to remember this when I have to tell him the sane thing 5 times 😬

Thanks for your help 🙏 you've been great.

[AyrshireK in reply to DD75]

You can read more about Hepatic Encephalopathy on the British Liver Trust website at:- britishlivertrust.org.uk/in...

Sadly, TIPSS can exacerbate the symptoms of HE since the blood rather than filtering through the liver (even the cirrhotic one) is now being channelled through (as if through a canal). When filtering through the liver some of the toxins would be removed but now the blood is going through the liver without treatment it can therefore lead to more toxin build up - hence the reason your hubby is on the lactulose but if he is still symptomatic then it might be worth asking about Rifaximin too ( Lactulose and Rifaximin combined are now the usual treatment for HE).

Are you attending appointments with your husband? Some of what you say seems to point to him going alone and forgetting what's been said. My hubby has never been able to go to appointments alone (even during Covid) since he struggles with all the med speak, understanding information and guidance.

Has your hubby seen a liver specialist dietician and got the dietary advice written down, it's not fair them shouting at him if he hasn't gotten the information for you both to work with. My hubby and I saw the dietician together, a booklet to work with and we make sure he eats appropriately together.

(My hubby has auto immune cirrhosis with mild HE, he's on Rifaximin and Lactulose - he's been diagnosed since 2012).

Katie

[DD75 in reply to AyrshireK]

Thank you for your advice.

I recently resigned from work so I can get a part time job so I can attend appointments with him. They have actually booked an appointment with Dietician at end of month I'm definitely going to that.

He sees consultants pancreatic gastro heomotology different ones for different things. Its bizarre i think the liver consultant is under the gastro department.

Thank you Katie you've been a rock this evening and really helpful 🤗

[DD75 in reply to Fibro2021]

Thank you for the advice and helping me. You've been a rock this evening Thank you 🙏🤗

[Rshc]

hi, it sounds like you have been through a lot. My partner (diagnosed 22.12.21 with ARLD in hospital) has some of the same symptoms but not HE. When he was first hospitalised the hospital focused on getting calories into him and not so much what those calories were. I realise things are complicated further by the diabetes but don't get so focused on creating beautiful balanced meals and focus on getting something into him that he can stomach and isn't high in salt. When my partner went for his transplant assessment the dietitian told him there is very little (with the exception of alcohol and salt) that you can eat or drink that will actually cause harm - there are obviously things that are better for him. But even a bowl of home made soup (canned soup can have a lot of salt) is great, or in my partners case he ate a lot of cake! Protein is important as is a small snack (even a fortisip will do) just before bed.

I would say that that they cannot tell from his bloods if he is eating well - you should discuss this at the next appointment. The bloods will give a snap shot of the state of his liver and will show if he is drinking if they are testing for ethanol but it won't tell them that he only had a fortisip yesterday. I go to every appointment with my partner and god am I annoying! I ask tons of questions, I bug the consultant secretary if I need to, I leave messages and emails and basically make myself a pain!

Have you discussed if he would be a candidate for transplant? He has been off alcohol for a good while by the sounds of it. The assessment is a little gruelling and they do need to insure he is fit enough to go through the op .

Good luck, I do feel for you, its a tough road xx

[DD75 in reply to Rshc]

Thank you for your advice it helps massively. Re bloods they said they could tell he was missing certain proteins which I assume meant he now not getting them in his diet as he was when he first came out 🤷‍♀️ to be fair his eating habits have gone downhill over last 2 months he was living off cheese, pickled onions, salt and vinegar crisps and peanuts 🤦‍♀️ he was craving vinegar but also now loves brocoli and wants it with everything!! He's being sent for genetic screening as they think it maybe genetic as he's not producing anticoagulant or something to that effect. They've (to my knowledge from hubby) have said he may well need a liver transplant but at moment he'd nit survive the operation he has like a 80% chance of dying on the table. Also he's on fragmin to try to reduce blood clot in portal vein he'll be on it for life apparently which the prospect of this for my husband is not pleasant as apparently the injections are very painful 😬 even chemist told me yep they're painful.

I'm going to go to next appointment but hubby said I need to let him speak or he'll never get a word in edgeways and forget to ask his own questions 😅.

Thank you for your help 🙏 xx

[AyrshireK in reply to DD75]

Before you go to the appointment write down all his current meds, any/all symptoms you are both noticing plus all the questions you both want to ask and that way you can work down your list and get everything answered that needs to be. My hubby gets so confused and has a tendency to waffle without getting to the point so having discussed beforehand we are able to be a bit more clear and concise at appointments We keep a note book purely for his appointments and I jot down answers in it so we can refer back.

Make sure you are keeping all appointment letters, test reports and any hospital correspondence - this is useful for doing your own monitoring plus should you go on to apply for benefits.

Katie

[DD75 in reply to AyrshireK]

Thanks Katie,

Apologies for late reply. I've been keeping a diary of his eating habits and put all his appointments in his phone so trying to manage.

He was at hospital yesterday and they gave him an injection for a specific protein as his body doesn't naturally produce it which they are looking into. All go.

Hope you and your husband are ok.

Thanks again for all your help.

[Readlots]

Hi, you mentioned that you’ve given up your job so that you can support your husband. It might be worth checking to see if you are entitled to any benefits. I’m thinking PIP for your husband and maybe attendance allowance for you, but there may be more that would help. Citizens Advice or Care UK may be able to help you claim. Gov.uk is a good starting place for more information. Also your local authority website for sources of support locally.

[DD75 in reply to Readlots]

Thank you. My husband gets PIP Veterans UK helped him with the process I need to try and claim carers I think but I'll definitely look into it thank you for reminding me 🙏

[AyrshireK in reply to DD75]

Application for carers allowance is pretty simple if hubby is getting PIP already, you are bssically on call for hum 24/7 therefore you are easily caring for 35 + hours per week. There is a £120 per week earnings limit but if you are giving up work to care for him you should be eligible. I am self-employed and needed to provide previous two years trading accounts and I get Carers Allowance.

Katie