Cirrhosis - Not too sure where to go from here..

[Cazza_BDA]

Hello,

Sorry for writing again, but I am really not too sure once again.

I have found out yesterday, by asking for my doctors to send through my fibroscan results from May, that I have stage 4 fibrosis (39.7 kPa), I was admitted to hospital and after various tests, my sister was told, I was at stage 2-3. I admit she was not told by the hospital consultant, but by his ontorage of trainees. Before leaving the hospital, I was more worried about work, I was very weak then, and the consultant reassured me and kindly put on my dismissal notes, for a sick leave of 2 month's. I do remember him saying at least that amount of time, when he was with me. Since leaving hospital, I have got a lot better physically. I actually eat OK and do mild exercises. I cannot say I am 100%, but a million times better then where I was. My blood tests are getting better slowly on most results, 1 has gone up AST (do not know what that means). I am now getting worried and nervous to be honest about going back to work in 2 weeks time, my boss has been really supportive, but I know there is only so much they can do, as work do have a strict policy on taking anymore sick leave once you come back, ie written warnings - etc. My physio says it would do me good to go back, my sister's say, to get the equity out of my house and live TODAY.

I keep looking at online articles on what the future looks like...and worry no end...

I really don't know what to do. Any advise would be gratefully received.

Thank-you

[Malty3870]

Hi I would make sure ur 100% before you do go back you don't want a relapse. I wish the Drs would put in ur letters what all these word and abbreviations mean its so annoying, hope ur feeling better soon 🤞

[Cazza_BDA in reply to Malty3870]

Hi Malty,

Thank-you for replying, I think my mail got left out a bit for replies, as there was quite a scurry of mails to the liver threading when I posted it. Ohh well

The thing I am worried about is the following.

Work want an outside company ( a sort of new occupational therapy team) we had our own personal OT person before lockdown. Who did know me and knew my problems. But my boss has asked me (that it is totally optional by me to authorise) for this new OT team to call me and assess me medically to see how to bring me back to work ie: phased hours etc, my boss says this is also to help her, as she also needs guidance, which is fine, but although I have told the whole truth to my boss. I have not really trusted anyone else, thinking , once they know about me, I will be put on the scrap heap.

A couple of people have told me the following.

1. My nurse at the doctor's, whom I do trust saying that although I feel fit on the outside now, I do not know with my condition f4 cirrhosis, what is going on, on my insides. And that it could suddenly affect me, without any warning. Making it pretty serious.

2. A person from work although, she is a busy body, and interferes a lot of the time, thinking she is doing good, did say to me yesterday, that with what is happening at work redundancies etc to the management team at the moment. That I should tell this outside team everything so that it is documented. Incase something happens to my boss and it is lost in system, which it would be in my company.

3. My sister telling me that she is worried that I might collapse or something at work, and that once I go back, taking any more time off work is taken really seriously.

4. Me doing a few squats yesterday, and struggling with my own house steps afterwards, although I do walk my sister's dog every morning.

Sorry about the war and peace message, I am just scared to open up a whole can of worms.

Can you guide me at all. I know it is not your job, but I suppose I am just needing reassurance before I put my foot into it. I am trying to make sense of what to do, with what people are saying to me.

Thanks for talking, and you don't need to reply, if I am a burden. xx

[Malty3870 in reply to Cazza_BDA]

Good morning I worked for the NHS for 20 year, my sick pay ran out so me and work deceided it would be best if I had my contract terminated on ill health, like you I did not want to go back to work and keep having to have time off cos I was unwell and I new in myself I wasn't ready to go back, my job was hard work and couldn't of possibly managed it. You no ur own body best and if your getting out of breath (I do aswell ) ya really need to hard think before going back to work, put you first u matter most, dont go back if ur not ready x

[Cazza_BDA in reply to Malty3870]

Thank-you for replying. I think I have made my mind up to 'tell' my companies 'Occupational therapy team' the whole truth about the extent of my illness. They can then make realistic decisions as to phasing me back into work and to what extent. My boss is calling me on Monday, after this lovely weather weekend to ask me if I want to go ahead, so have a little more time to think about it.

Thankyou for your honesty...

[Malty3870 in reply to Cazza_BDA]

Defo tell them, dont feel ashamed of having a bad liver, I don't think people realise that having a bad liver affects ur whole body, from the tiredness to ur hair getting thinner and every thing else that comes along with it. You need a chat any time just message me, we all in the same boat here and talking really does help, I think my family r sick of me now so great to talk to people who r going threw the same thing x

[Hidden]

Hi Cazza,

Please don't apologise for posting, you are most welcome to post on our forum.

If you are in the UK, you are also welcome to call our nurse helpline for a chat on 0800 652 7330 10am to 3pm Mon to Fri.

Warm wishes

Trust1

[Cazza_BDA in reply to Hidden]

Thank-you