Living with alcohol related cirrhosis- I know it varies but whats "normal"?

[BoHo73]

I was hospitalised with decompensated liver failure in July this year. Diagnosis is cirrhosis,portal hypertension and hypertensive gastropathy. My liver biochemistry was very deranged in July (Bilirubin 400 which explains the jaundice, itching,fatigue and confusion I was experiencing),the ascites and swelling were dealt with using diuretics and IV albumin in preference to drainage (my choice). I'm no longer drinking alcohol and my diet was never really that bad- fluctuating energy levels and fatigue remain an issue but they're improving so I must be doing something right. Liver bloods in September were much improved and I have a consultation with a hepatologist in January 2024.Things have improved for me during the last few weeks and I'm finding myself able to do more without having to sleep all of the following day 🙂. The itching and abdominal pain I'm learning to manage- avoiding lifting anything heavy seems to minimise the abdominal pain but it's still a little random which symptom I get for the day,or night. Full body itching or non-resolvable abdominal pain at night when I'm really tired drives me mad!

Now that I'm feeling a bit better I want to (and need to as I'm broke) get back to work. I work front line NHS so it's a pretty heavy job with life or death consequences for patients if I mess up- I'm waiting for Occupational Health dept. to do a primary assessment of my fitness before I can make a definite decision about my future career options.

I work with liver failure patients but my knowledge and experience only stretches to acute ICU admissions so I have no idea what living with the chronic condition entails.

How do you decide whether you can work safely and effectively when symptoms can fluctuate from day to day?

If anyone has been in a similar situation I'd appreciate some advice.

Thanks in advance.

[AyrshireK]

As you rightly say it 'varies' and there is absolutely no 'normal' that every patient experiences. You'll find folks on here who have been able to work right up to the point they've needed transplant whereas others are really poorly and some merely 'function' day to day.

My hubby was diagnosed with auto immune related cirrhosis in April 2012 (it doesn't matter what the underlying cause of your damage it, it's now all about living with the damage). He was at decompensated stage then with a massive variceal bleed - has never had ascites (thank fully). He has never been able to even contemplate going to work - he has chronic fatigue, frequently needs bed rest, has difficulties with comprehension, is slow in movement and concentration difficulties. He previously worked as a welder in heavy engineering. He can no longer drive due to HE symptoms.

We describe life with cirrhosis as a roller coaster, there are ups (slightly better days) and there are lows, big dips sometimes BUT you just have to ride it. Make the most of those better days, write off the bad. I don't know how things will pan out with your employment issues and know it's additional stress you don't need but hopefully they will find you a role that you can carry out.

Katie

[BoHo73 in reply to AyrshireK]

Thanks Katie- I hope that you're husband is having a good day today. I think it's a guilt issue in that 'if I'm feeling good today I should be in work' I'll see what OH advise when I get to see them and take it from there.Helen

[juneblue]

I’m about 7 months ahead of you. Real close to death with first hospitalization. Blood levels extremely elevated but the one that nearly killed me was my ammonia levels(well over 2000). The doctor said he had never even read about numbers that high. Went through most of common symptoms with ascites and edema being the worst. No itching or bleeds.

What has helped me the most besides the standard no drinking, relatively good diet and exercising was a change in attitude. Once I accepted Death is a real possibility that worry subsided. I decided I wasn’t ready to die so when I felt like laying around due to fatigue; I woul get up and accomplish one task not always physical but mostly. I went from looking like death to intense walking, riding bike stair steeps etc. weight lift not much at first. Now I walk approximately 12 miles a week and lift relatively heavy weights.

It’s been about a year now and only symptom is mild ascites. Keep a positive attitude and remember to take care of all your body systems Mental health being the most important to me. See the gastroenterologist in January for a check up. That’s my normal. God Bless.

[BoHo73 in reply to juneblue]

Thanks for your reply and advice. Well done on getting to where you are activity wise. I'm walking more each day but nowhere near to my previous fitness levels. The unpredictability of symptoms is one of the most annoying things- hopefully I'll get back to some form of work soon. Take care.

[RugbyMama]

My husband was unofficially diagnosed with cirrhosis in May and then officially diagnosed in October. I say unofficially because the liver nurse confirmed cirrhosis during his fibroscan in May which was an eye-watering 64.4 kPA but official diagnoses also includes diagnosis of haemochromotosis where iron overload has caused liver inflammation and late-onset type-1 diabetes. So effectively 3 different but all related conditions, all that cause chronic levels of fatigue. He also experiences pancreatitis and joint pain as a result of the iron overload.

My husband is lucky. He works for a very small company with an exceptionally patient manager and works from home for the majority. Much of his work is emails, phone calls, video meetings. This means if he's having a pain day or a tired day he can balance his calendar to suit and may be able to WFB (work from bed!!) . We plan our weekends better so we try not to do two "big" things in a row, so if we go for a family walk one day, the other day we will stay home and watch the football. If he has a high blood sugar day, the following day he'll be exhausted and very cranky, so again we accept that plans may have to change at a moment's notice.

Please talk to occupational health, be open and honest with them and remember the majority of what is said is confidential (I work in HR). Employer will get an overview, ideas of reasonable adjustments etc and be advised whether diagnosis would meet criteria to be considered a disability (yes, it can) but not every little detail. Explain to them what a good day looks like and what a bad day looks like. Chronic conditions that can flare one day and then reduce in symptoms the next are often the most challenging to manage. Consider what would reasonably help you - shorter hours, fewer days, longer recovery between shifts etc. Remember also that the liver is the most forgiving of all your organs; you may not always feel as you feel now.

[BoHo73 in reply to RugbyMama]

Thanks for your reply. I hope that your husband is having a 'good' day. The unpredictability of this condition is a bit like a bad lottery- I really didn't appreciate the quality and variety of my life pre diagnosis. I don't have a substantive contract as I've been working on a zero hour bank contract for NHS Trusts for the last decade. We travelled a lot as my partner is retired so the arrangement worked really well.

I am waiting for an Occupational Health appointment but,as they won't accept self referrals, I'm at the mercy of the Trust Bank. They also have no obligation to redeploy me. I control my hours and shifts but if I turn up I am stating that I am fully fit to work that shift which, currently, is debatable.

I have pension funds that I may be able to access but I need to be assessed before I go down that particular road.

Fingers crossed I can get it sorted soon- SSP and savings are dwindling.

[Richard-Allen]

Hello BoHo73 there is so much about your story I can relate to and empathise with. I feel there is so much I can possibly help you with here. Would you mind if I was to write you a personal message on here please. I have a full day today, but should have more time on my hands tomorrow. If that would be alright.

Many thanks

Richard

[BoHo73 in reply to Richard-Allen]

Hello Richard, thanks for your reply. I've read your responses to others and would appreciate any input. Tomorrow's fine. Have a good day. Helen.