Able to work again

[Holidaymad22]

My husband was diagnosed in August this year with Cirrohis he seemed to be doing really well then a couple of weeks ago was admitted to hospital with fluid on his tummy, he is extremely tired all the time does this ever improve and do people continue to work with this disease?

[AyrshireK]

You and hubby are very early into your liver diagnosis and if he's requiring ascites draining then he's still quite poorly and in the decompensated end of cirrhosis. Have they identified the cause of his cirrhosis? Is the cause now being treated and/or lifestyle changes made?

There is a chance his liver can stabilize and some degree of decent health return.

There are folks on here who worked right up to the day they got a transplant whereas others can't.

Chronic fatigue, sleep disturbance and cognitive issues, concentation problems are my hubbies main symptoms - he having been diagnosed with auto immune cirrhosis back in April 2012.

There is no way he could return to his former employment (welder in heavy engineering) and doesn't really have the ability to retrain. The fatigue and ups and downs of his condition means you don't know what the next hour will bring so sadly he has been out of work since he took unwell.

We have to live on Personal Independence Payment, carers allowance and savings (hubby got an inheritance that took us over threshold for his Employment and Support Allowance that we had been getting - because of his unfit for work status).

Get benefits help from citizen's advice or similar to see what you may be entitled to claim in light of hubbies situation.

Katie

[Holidaymad22 in reply to AyrshireK]

Thanks for your reply, my husband was a heavy drinker for many years, he has completely changed his lifestyle he has had no alcohol since August, he has also changed his diet to low sodium diet, he is having terrible sleep problems awake most of the night, he is just desperate to go back to work, he has an office job working with the council but even so I fear he may not be able to even that, it’s turned out world completely upside down, I’ve been trying to get as much information as possible about this disease

Karen

[Mango5cm in reply to AyrshireK]

hi Katie - just to let you know there is a new style ESA benefit that is not means tested . We’ve managed to claim £77 a week for my son. He’s 62 - not sure if your husband is under pensionable age . Best wishes Carol x

[Kristian]

Hi Holiday,

You can continue to work with Liver disease, even at the very latter stages, but lots of factors will affect each person as to how practical this actually is. I'm one of those that Katie refers too that was able to work right up to getting my transplant, but it was getting very difficult.

As he works in an office and for the local council he has much in his favour. As a large organisation councils can be more accommodating and if your husband wants to continue working then it would be sensible to arrange an occupational health assessment through his employer. This will help identify any reasonable adjustments that can be made that can facilitate him remaining in employment for as long as he is able. Most large organisations will facilitate this as a) they do generally care about their employees, b) they pretty much have to, and c) its in their interests too.

People generally get nervous when OH is mentioned. It has this reputation as a means of serving an employer's need to push people out the door. That is completely false. In my experience OH assessments have been pretty much always about what can be done that is best for me. Whilst he may say in any assessment that he has cirrhosis, he doesn't have to identify the cause, unless he wants to of course. Whilst the OH person will make a report to his employer to make recommendations, which will include basic details of his condition and how it affects him, your conversation is still confidential.

In terms of reasonable adjustments, these can be many and varied. Anything from the amount of time he has to work, the time he is allowed to start and finish, measures that will enable him to work from home or to leave work early when needed or take extra or longer breaks during the day. It can also include a change of role if that would make things easier.

In my personal view, the longer you can stay in work the better. There are the obvious benefits of having protections in law and also having access to things like sick pay etc. You also have a job to go back to after recovery too. Which is much easier than having to go out and find another job after recovery. You'll also have access to support services too through your employer you may not have outside.

There also more hidden benefits. With the effects of cirrhosis it is very very easy just to sit and lounge in a chair, frequently dozing off due to the fatigue effects. Keeping in work gives you a bit of purpose and incentive. A bit of impetuous to get up and get out the house. In doing so you have to be a little more active which in turn means you will be a bit fitter and that will aid any recovery and will stave off some of the complications that come with inactivity.

It will be difficult with the fatigue and lack of energy, but if he can do it then I would always recommend he try. Even if, like me, he may occaisionally doze off at his keyboard, lol.

I notice in one of your replies you mention he has difficulty sleeping at night. This is common with cirrhosis too. It was explained to me that one reason for this can be a factor of energy deficeit too. It is therefore a good idea to have some form of carbohydrate rich snack before going to bed, some toast, a muffin, some jaffa cakes or some biscuits are all great for this. Its not likely to be a cure all, but it may facilitate more sleep than he is currently getting. If you ever find yourself in the liver ward at the QE in Birmingham, there's even posters on the back of the door reminding you to order your evening snack, lol, and they do very good muffins there 😋.

Hope thats helpful and good luck.

[Holidaymad22 in reply to Kristian]

Thank you so much for your reply that’s so reassuring to read, you’ve answered so many things that have been going on in my head, his work are arranging for him to see OH so hopefully they will come up with a plan for him, he has a couple more weeks off then is hoping to return fingers crossed, he’s trying so hard to build up his stamina going for short walks and doing some exercise's

Karen x

[Kristian in reply to Holidaymad22]

Thats great, he's doing the right thing and I'm sure his employer will do all they can to be accommodating too. Public organisations tend to be pretty good when it comes to things like this and are usually very supportive.