Working with Decompensated Cirrohsis

[AlexJ91]

Hi all,

I am looking for some advice and your experiences regarding going back to work with a decompensated Cirrohsis diagnosis.

My mum was diagnosed in May last year, after a 7 week stay in hospital (ascites, heart attack, brief stay in Intensive Care) she was discharged. She has had a further 3 hospitalizations since then, one of which was life threatening (burst varicies). I would describe my mum to be just about ‘managing’ to live independently - with a lot of checking in by friends and family. I know she still has a drink and we as a family accept that we are at a point where she will never stop.

As she has now been off work continuously since May, she is looking to return to work. Returning to work has always been her goal during her hospitalizations however, the closer we get to it happening the more concerned I become about the fact she will not be able to manage her duties. She is an Administrator and I don’t think she will be able to manage the organisation of getting herself up, dressed and at work for 8am let alone manage her duties whilst she is there. She is due to have an occupational health assessment today which will obviously determine the course of her return, but I just wondered if anyone here has had a similar experience that they are willing to share? Could you manage the duties of your job? Did anyone give up working and do something different?

Any advice is appreciated.

Thank you ☺️

[Kristian]

I was able to stay in work right up to having my transplant. I worked in an office so it wasn't too physically taxing. However, it still really does take it out of you and you do get fatigued pretty quickly. Nonetheless it was possible to do. I must admit though, I'm not sure i could have done it for much longer.

The occupational health assessment is really helpful as it will help determine what if any reasonable adjustments need to be made to help her return. For me just the travelling to the office was debilitating. So the effort involved should not be underestimated. I was able to work from home if needed, which was one of the reasonable adjustments for me.

Being able to return to work is a good thing to aim for. It gives that degree of normality and purpose. However, its impacts shouldn't be underestimated, even for the desk jockeys like myself, lol.

Obviously in the current circumstances returning to an office may not yet be advisable anyway.

[AlexJ91 in reply to Kristian]

Thank you for your response, it is really helpful. Mum said the same about the journey to the office being a worry itself.

I absolutley agree that having a role in society is something that is important for my mum, she has been working 7 days per week since she was 18 and so not having anything to base her day around is something she finds really difficult. I suppose I can just see that she can’t even do basic sums/remember what she did last week so I worry about how she will manage a role where she is in charge of finances and raising invoiced/multiple demands. I feel it is unrealistic but that is very difficult for Mum to accept. We are awaiting the report from OH but it is likely she may be furloughed/working from home until April so that gives us a little longer to figure all of this out!

Thank you ☺️

[Lam1e]

Hi Alex

I was sure after my first stay in hospital with cirrhosis, ascites and possibly mild hepatic Encephalopathy that I could go back to work as a PA! Three further short hospitalisations, the exhaustion, the poor sleep and the regular ascites drains madd this unrealistic! I then volunteered to do basic and repetitive work with a charity and I could just about manage 2 hours every 3 days! I then was being assessed for transplant and really needed to focus on getting well for that! I also (partly because of the HE) gave up my car.

I can understand your mum’s determination, it will probably be good for her to be working, just perhaps something easier and a few hours a week if that’s a. Option?

Stay safe🙏💜

[AlexJ91 in reply to Lam1e]

Thank you so much for your reply. It is really helpful to hear other peoples experiences. I feel my mum is in that same mindset of thinking she will be able to go back and do her job perfectly with some minor reasonable adjustments however I do worry as she cannot even do basic arithmetic and her presentation varies so much from day to day. Mum has always worked 7 days per week so the thought of not having a job to her is massive I and I agree with your above point - it will be beneficial for her to work/do something. I think she also worries about the financial implication.

We have been told that she is not eligible for a transplant so I fear that this is only the start of a difficult road for us. I do wish she would give up her car too - I fear she is not well enough to be driving a car! Thank you for your response x