Are you able to work with liver disease/cirrhosis? As you know my husband has only just found out that there is something wrong with his liver and right now we cannot see a time when he will be able to work again. Is it possible?
Are you able to work: Are you able to... - British Liver Trust
Are you able to work
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Bs1524
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•
Hi
I'm sorry your husband feels so rotten. I had to take ill health retirement last year due to my many conditions. My boss did try everything but to no avail. I hope you have some support around you. I'm very lucky that way . Everyone's fantastic on here. Love and hugs Lynne xxxx
Bs1524• in reply to
Thanks, I have found everyone warm and welcoming and it good to know that there is support out there. I feel quite alone with where my husband is feeling unwell he isn’t thinking about things.
Don’t feel alone.as you’ve mentioned there are a lot on here who’ll be here for you .and who’ve gone through what your going through and come out the other side me and my partner also. We had to live with the diagnosis for six years prior to a transplant with all the usual accompaniments if you like.i know it’s a cliche but take one day at a time and always try and remain positive.paul
It depends on how badly affected the patient is with the condition and of course what type of work is envisaged.
My hubby was a welder in heavy engineering so there is absolutely no chance he can still do that as he can't concentrate for long so would be dangerous in that type of environment, he can't bend for long without pain and his job involved constant kneeling. He can no longer drive due to fatigue and concentration issues. Also his hands have a shake so that would rule out welding. Sadly owing to mild HE he finds learning knew things difficult, he finds simple instructions hard to follow so it's very unlikely he could re-train for anything just now.
We don't know what the future will hold.
Katie
We are new to liver disease and are yet to have an appointment with the gastro clinic to get a definite diagnosis but looking at how ill my husband looks and he too as the shakes not all the time it comes and goes I don’t know if that is normal. I cannot see him well enough for the foreseeable future. I am working full time but only have just over two years to retirement I am paying for everything so no chance of putting money away as I had planned. Our whole life has changed in the blink of an eye and it is scary.
• in reply toBs1524
Hi Bs
A little tremor tends to be there all the time but the bad shakes come and go. One of the tests the Consultants asks you to do is hold out your hand in front of you. When you’re (one) is ill they expect to see some trembling/shaking.
I had to give up work 5 years ago. Even though now “fixed” I could never work full time because of inability to concentrate (like Katie’s hubby) and the tendency to require frequent naps - though probably due to the strong painkillers I am still on.
Good luck
Miles
• in reply toBs1524
Hi
Could you claim for pip, this doesn't require you to give any financial info. Take care Lynne
Hello there.ive said many times how I have a manual engineering job.and carried on working after four bleeds in as many years and worked up until four months to a having a liver transplant.but because of my low platelets and HE at the time I was lucky that I got that far because in hindsight I should of finished a while before .as it was the low platelets that were the main issue as if I’d had some sort of trauma I’d of bled to death quite possibly.so five months on from my TP I’m just about to go back as needs must.with all the previous symptoms gone like HE ,varicies,edema’s asities.wish you well.paul
Good luck with your return to work! I hope you are doing well. 👍😀
Thanks Popel I am trying to stay positive for my husband though we did have some good news bloods taken at go surgery show as the doc put it everything going the right way and improving but it is a long process. I think I am just feeling a bit sorry for myself right now as apart from working I am doing everything in the house as well and as husband will not go out I spend the weekend doing everything on my own as well. Sorry I know I sound self pitying probably just having an off day.
That is very encouraging news from the doc. It is a long road, full of ups and downs. At least you can share them both here.
I used to have to get up, take deep breaths, paint on my smile and face the day ahead. My kids, dancing and tough gym workouts were my best tonic during those 4 years of down days..... a complete distraction and detatchment from home life.
Xx
Hi
I'm sorry you are having a rough time. Is there anyone who us close to you that could help you a little. Please take care. Love and hugs Lynne xxxx
Hi I was in the same situation as you this time last year. It is so scary. One minute my husband was well the next he was very ill. He was unable to work and found even the smallest task at home was too strenuous for him. It took over a month to get a proper diagnosis. The worst was the constant fatigue followed by the dreaded HE which stopped him driving.
I felt I had to cope with everything which left me feeling very run down and upset. My advice is take each day as it comes and treat days where he feels slightly better as a bonus. Try to do little things together even if it is a very short walk. I hope you have a good support network. We have been lucky as my husband was put on the transplant list and received his new liver almost immediately. He is now a different person and I feel I have my old husband back. Good luck and if you feel like a chat please contact me.
Your story sounds identical to ours. Hubby diagnosed with liver cirrhosis a year ago and not worked since. Unless he has a successful transplant I can't see him ever working again. He is 57 and I am 47. We should have paid our mortgage off in 7 years but I have just remortgaged based on my own income for another 20 years to pay off the mounting debt and have a more affordable mortgage. My husband claims ESA (Emplyment Support Allowance) which is £111 a week. I was surprised he could get this but my income wasn't taken into account. Like you I am also doing more around the house and our social life has dive bombed. As many people are saying, take things a day at a time with your husband but also plan for worst case scenario so you are in best position financially as you can be under the circumstances. I imagine many will read this and think it is a selfish post. If I was selfish I'd have sold the house, given him his half and left him to it! Caring for someone with alcohol related cirrhosis is anything but selfish.
Hi, I have never heard about this payment how do you get it? We do not have have an exact diagnosis yet he I cam out of hospital on 12th May saw how bad he had become in the two weeks I had been in and arranged for him to get to go. I wasn’t allowed to drive and luckily a friend had come up fromHerts to see me and took us to the hospital he was in for four days. Once they said cancer then no cirrhosis but as the Trust said if his ascites and jaundice has gone his liver is working. He will not leave the house unless to see go or hospital we have yet to get an appointment with gastro. I am starting to feel this is as well as he is ever going to be.
I researched ESA on the Department for Work and Pensions website. I think you can then download an application form but as there were several different types of ESA and we weren't sure which exactly applied to my husband, he went into the local Job Centre. I cannot say it was a quick and easy process and he did have to travel to an assessment centre in our nearest city to prove that he was incapable of work (despite his doctor signing him off work continuously)...he was nearly dead on his feet when he arrived in their office! They paid for travel expenses by the way. He was given benefits in back pay to the point that his employment was terminated and will be reviewed in November 2020, so hopefully he will continue to get the payments until then if needed without having to prove himself worthy again! The funniest thing of all about this is he is entitled to a Christmas bonus of...…..£10! That said, as a public servant, I have never had a bonus in my life! Also, he had a tax rebate which was a nice surprise, so keep an eye on that sort of thing too come April/May 2020. Depending how things go, he may be entitled to being medically retired considering his age, which means he can access his pensions (discounted) sooner rather than later. Just somethings to consider. Husband has just laughed when he read that I said I do more around the house...but I reminded him we used to have a cleaner!!!
I will look into for the last three/four years he has been self employed but I think he could apply based on contributions but until I can convince him to leave the house I cannot see getting along to a job Centre.
Thanks for the info x
I think we may have a problem due to the savings we have for hubby to be eligible.
Not necessarily, it depends on his N/I contributions. If he has paid in sufficient contributions this is NOT means tested at al. If he receives any private pension/s this does impact. For every £12 of private pension rec'd then £1 is deducted from the ESA .I was unsure what you meant about cancer? Not a good tiing to be diagnosed with and if your husband believes he has it then it would explain some of his behaviour. Men deal with illness differently than us women. They see it a their problem to solve, talking about it will only happen when he feels ready. If this is the diagnosis then so much is in place for people to try and remove some of the practical concerns like money, benefits etc. Macmillan Nurses where amazing with my ex. boyfriend. He was intelligent and articulate he had run a successful business. He had not got a clue about the benefits system. He was alcohol dependent but in total denial. They were so well organised and lifted a big concern away from him. He thought he was going to die, They sorted parking at the hospital, travel costs, asked regularly did he require a new bed, cooker etc Surgery was the only option, no chemo,drugs or radiotherapy. Surgery involved burning away, with a lazer, one side under his tongue. Only a 5% survival rate He had to be detoxed before his op too. He didnt have a problem with alcohol at all according to him. . He never touched spirits or wine everyone can have a few beers after a hard day work? He was never a naasty drunk , just got a bit dafter and funnier. He was offered meds to stop him drinking but he said he enjoyed a few pints. He had a wide circle of friends many of them were also heavy drinkers so it appeared normal. Sorry for digressing but if he does have cancer and is alcoholic, Macmillan will remove a lot of your worries.They completed all the forms, he also got free dental treatment . He was very very fortunate, he was one of the 5% I ended the relationship when Mr Nasty came on the scene. I realised he was committing slow suicide and lost all feelings I had for him. You should get NH transport to get to appointments, but do remember that you must take care f yourself. Its essential and you are not being selfish. Hazelxx
Sorry I didn’t explain myself very well while he was on the ambulatory ward one doctor said don’t worry about his liver we can manage that he was concerned about a blood result and said so very sorry it looks like cancer but when it was shown to a consultant he wasn’t bothered about it. During the scan they saw an enlarged lymph node then there was panic about that, then they couldn’t find it it hasn’t been mentioned since. This is why am wish we could get the gastro appointment and get some definite answers.
Ask your GP if he can chase up your appointment, It is you additional stress DWP shoulld be able to tell you if he qualifies for ESA that is contribution based.My ex had to chase up his investigations,he was originally told the tiny lump he had was a calcium deposit! 9 months on he pushed for answers. Just one week later after a biopsy he got the results.Stay strong you have lots of support on here xx
You are so right and l think people underestimate how hard it is. It is difficult enough looking after a loved 1 with these illnesses, without throwing alcohol addiction into the mix aswell. Especially when they are in denial, too ill to work, stealing money from bank accounts and even his son's paper round money to feed his habit !
I have spent probably the last 5 years leading up to last summer telling my husband he's an alcoholic but he never tried to do anything about it. Almost a year ago to this day his liver failed and he ended up in hospital and was told to give up the alcohol or die. He has done so and I am so proud of him for this; it's therefore all the more pitiful that his health is still declining because of the irreparable damage that had already been done.
• in reply toSpringBird
Hi springbird
That’s very sad. ☹️. Has he been talked to about a possible transplant? Do you even know if he may be eligible or not? Seems to me that you need to talk to your GP about this urgently. I didn’t get assessed until I had been diagnosed for 4 years. You have to be at the stage where you’re so ill it’s a necessity but on the other hand not so ill that you can’t withstand the trauma (physically and emotionally) of a transplant. (Sorry if you already know all of this but it seems like you ought to have something being done about things right now?)
Good luck
Miles
SpringBird• in reply to
Hi PiloMilo, husband is currently under going pre-transplant physical and psychological tests as the hospital have acknowledged he is worsening and has stayed off the bottle. That said, these tests are being strung out over several months, so obviously not an emergency case. Bad days and not so bad days!
Oh I am so sorry SpringBird my story is similar I kept asking my husband to cut down till in the end for my own sanity I stopped. He stopped drinking four years ago because he didn’t feel like it anymore and when he started again as a coping mechanism when his estranged daughter got back in touch with news of her cancer I tried to get him to stop and he was cutting down. Some of how he is I believe is due to deep depression. He had no problem stopping the hospital was surprised that he didn’t need any help so he was not dependent and somehow that makes it worse. X
Would u qualify for pip?
I have checked and I don’t think he will qualify for PIP as although he is too poorly to work, he doesn’t need help eating etc he can make a coffee, he is ok with personal care and he can eat and drink.
It isn’t only the activities of daily living it might be that he needs help at times due tog fatigue which could affect his ability to do things also mobility which in my case was reduced from fatigue and later after my transplant when I had a stroke
Well he certainly has brain fog but he is also quite depressed this was before becoming ill so it is hard to tell. He can’t text has his fingers have a bit of a wobble. Would some need to asses him?
Yes ask for an assessment and describe how he is on his WORSE day. A preexisting condition doesn’t matter as his mental health condition is very relevant as I’m sure this has an overall effect on everything he does and u help with. You have nothing to loose as long as you both talk honestly together about the effect the liver and mh condition has on him. It’s very difficult to say the worse of everything but it’s honest
Many of us are clueless when trying to negotiate all these benefits, So many people have worked all their lives and none of this is needed, I did a lot of investigative work and problem solving in my last job. I found so many skills I had were transferable, for example applying for these benefits presents a major problem. By breaking it down to the enth degree means there is only small problems I found a site called Benefits and Work -It is run by 2 solicitors who have accumulated knowledge on how every benefit application is viewed and exactly what points are available , using the correct wording , is essential. There is a small charge to access all of the site but I can honestly say it was the best £18 , as it was then, I have ever spent! I have a prolapsed bladder. I wasnt even considering mentioning it! If you have a whoops event just once a week its 15 points! Men often suffer after leaks or feel they need to pass wind and it has follow through. Severe fatigue can sometimes slow down mobility, so cannot make it in time. Yes its an embarrassing topic but pay dividends . I realised that as ringing is a problem you can register on line with DWP. It requires your NI number and passport info I only discovered this last week. I could see every single year of my working life and whether I had paid in sufficient contributions. I had full credit for every year of my working life apart from one. 1981! I gave birth on the 1/7 that year to my only wonderful daughter!I was well in excess of required 35 years to enable me to get my state pension. 50's child so wont get my state pension until Im 66. It also clarified why get ESA based on contributions,which is not means tested! I also collated all my medical evidence, it asks can they contact your GP or consultant but they dont! I didnt even have to go for a face to face interview. If they used common sense in all this, how many people just pack in a well paid job to get benefits? Yes its time consuming but if you look at the time your currently investing in worrying and trying to sort your finances, Carers allowance is also a consideration. You can still claim it if you work Im not sure if there is an hours worked limitation. Hazelxx
You can do it, have faith in yourself xx
Thanks for all the info zi will look out that site. My only concern is the NI contributions as he went self employed hen had all the upset with his daughter when he practically stopped so we may have to pay some top ups to qualify I will ask the accountant. He is isn’t well enough nought to work and keeping the private high vehicle is costing money in insurance and private hire licenses, card machine etc
Register is you first task. Any time he was sick with a certificate gets vreddited . Its the same for people who are registered carers. I used to fit 48 hrs in 24, I volunteered for an international drugs trial because I have psoriasis and felt it could help me and thousands of others.It was stringently monitored it was a blind trial. I knew I was on the drug because of the aftertaste in my mouth after injecting it. I should have then gone onto the open trial but I was way to sick.I tried to do part time I worked 3 days and slept for 4! My job was kept open for 18months I was diagnosed eventually by a neurologist.I had a brain scan to check it wasn't MS .The EBV left me with ME and fibromyalgia My now very ex husband hadnt signed up to the in sickness part of our marriage. He denied this of course, but I couldnt trust his word. I got him to sign a post nuptual agreement because I was afraid of losing my home. I had bought it long before we met and I paid off the mortgage.He had always said he would leave it to my only daughter if he outlived me but could see he had no intention of caring for me.He owned half of his deceased parents place so simplified things. I actually found it easier with him gone. Sorry for rambling, but even though I couldn't work my N/I was credited. Happy for you to PM me, The latest person I helped was my brother. He too was clueless about benefits. He started work at 15 and had worked continuously until he was 60. Started as a time served spark, then studied in his own time to complete his degree in Electrical Engineering. In spite of a risk assessment he suffered a fall. It has taken a couple of years to diagnose what is wrong with him. Finally diagnosed by a neurologist as having Transverse Myelitis. As only 300 people are diagnosed a year it is a rare condition There s no cure and very limited treatment either. He was told he could not return to work and could never work again. He is still trying to beat his body and still has trouble accepting his reality now. It was like pulling teeth trying to get through to him you must put down your symptoms on a bad day! I had to pull the I'm your big sister so I know best! He is now sorted and we are the best of friends. The tables have turned because he keeps reminding me to apply for PIP. Good nurse, bad patient lol
Thank you so much for sharing your experience and knowledge. We are seeing the accountant tomorrow so I can get full information on his NI contributions and if their are any we need to bring up to date as he has been self employed for the last couple of years but reading the criteria I think he has enough from when he was an employee. Can you get both ESA and PIP or is it either or. Is it better to claim on line or over the phone? I am going to register on the site you mentioned as well. We are at the gp on 12th August so I will see about getting a medical cert from him.
Thank you so much again.
Hi,
I was able to work right up until I had my transplant, as an electrician!! I must say the days I was unable to work were becoming more frequent, but I still worked as much as I could.
Good luck, I know how much of a worry it is, but, you are not alone. Just by being on here you’ll have loads of friends that you never knew you had!!
Andy
Hi. Unfortunately I was diagnosed with cirhossis last year and despite trying various changes in my work pattern wss unable to meet requirements. Mainly because of tiredness and never knowing if your going to be be able to do anything worthwhile from day to day to HE which causes memory and concentration issues which mean I could cause chaos if I was working!!! Saying that everyone is different and some people do manage to ho back to some kind of work. Just take time and try and get as well as possible then re look things then.
I was told I probably had a liver transplant in my future back in 2012, but my cirrhosis diagnosis (from NASH) was two or three years ago. I had my first variceal bleed over the last New Year. I am a civil servant, and have so far not had to take any sick leave. Before I had the bleed, I put in for semi retirement, so I am now working one week on, one week off which is helping with fatigue, and so that is working out for me. I am still 4 years off state retirement age...I am one of those women whose working life got extended from 60 to 66. Paying down the mortgage as much as I can, because obviously I don't know when things might deteriorate further. Good luck to you and yours.
I was diagnosed in May 2018 and had to give up my job, I worked in Software Sales (Internationally) and my job involved lots of travel so continuing was simply not an option. All the standard symptoms, jaundiced, erratic sleep always sleeping during the day, memory and concentration issues coupled with swiftly declining Platelets.... I was in such a bad way that they said if I made Xmas then I would be fortunate. I did and I today just received a letter confirming my last appointment with the local Liver team where they hope to refer me for a TX.
I receive, PIP (enhanced) and Universal Credit, it’s a fraction of my previous income but my lifestyle has changed dramatically. I don’t envisage ever getting back to work sadly.
Good luck to you on the journey, I can testify it can and did get better for me than those early days, keep going.
Hi Bs1524
Often people with liver disease can work, however, it is dependent on the stage of disease, and how their symptoms affect them and the job role they have.
If you are in the UK and would like a chat about this, or just for some general support for yourself, the helpline is open today 10am to 14.45 on 0800 652 7330
Warm wishes
Trust1
Bs1524• in reply to
Thanks I will call when not at work. Our biggest problem is that we haven’t seen the gastro team yet so don’t have a proper idea of what and how far things are, a prognosis we have just even told by ambulatory and gp that these things take time. Meanwhile in the real world bills need paying etc etc
• in reply toBs1524
It must be a really stressful time. You could always email me at helpline@britishlivertrust.org.uk and i can try to send you some useful links etc.
Take care.
It really depends on how sick the person is and his/her job. When I got sick last year, I was so ill (I almost died) doctors told me I would never work again, couldn’t live without a caregiver, and should file for disability. It took months to get healthier (still not 100%} but I’m working full-time again and living independently. So it can be done.
Ps forgot to say “brain fog” is a really difficult condition as it renders the person possibly unaware of the things u have to monitor ie medication, daily routine
Thank you so much I can see I need to take some time off to try and get some help I know for sure that he isn’t capable of doing that x
Thanks Laura, I feel as if I am not doing enough. If he isn’t able to push for what he needs then I should be doing it. He keeps saying for not to though, leave them to it. I think he doesn’t want a proper diagnosis.
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