New post from a New Member, Any Advice Please?

[davidh1965]

Hi, just been diagnosed in the last few weeks with liver cirrhosis.

Long story, but caught food poisoning on a diving holiday and it refused to clear up. After about 6 weeks the doctor did a blood test and initially thought I had liver cancer.

Went into hospital and they couldn’t find any evidence of cancer but said I did have a bad case of asities and a slightly reduced sized liver (then drained about 6 litters of fluid). I thought that would be it and looked forward to going back home for Christmas.

Was then told that I shouldn’t drive in the short term (4 weeks) and that I had ‘End stage liver disease’ by a new consultant who had taken over my treatment. Bit upset but took it on the chin without really going into the detail and went home given it was the day before Christmas.

After a couple of consultations post-Christmas the consultant wrote a letter back to my G.P. saying that although my symptoms were compensated and I was showing no signs of any neurological affects, he was not happy for me to begin driving again unless I had an EEG and he was happy with the result, due to the possibility of subclinical encephalopathy. Don’t actually drive for a living, in the normal daily sense but it’s a condition of employment that I hold a valid driving licence, so after a lot more research the scores on the doors are a UKELD score of between 47 and 50 over 5 blood tests, no obvious symptoms and have gone from zero medication to over a 100 a week (Creon, Spirolactone, Thiamine, Propranolol, Furosemide and Omeprazole) plus throw in a couple of vitamin juice drinks for good measure. I am a mid 50's male.

Very worried about the ELD diagnosis and looking at the UKELD score it doesn’t actually seem to get me on a transplant type list (appreciate that isn’t the golden bullet for everyone). Also losing a lot of sleep over the fact that I could have neurological disorder and / or lose my job in the process given no driving licence.

All new to me and feel that my wold has been turned upside down over the last 6 weeks or so, given there were no warning symptoms upfront. Have been off work since being hospitalised, anybody have any words of advice on how this is likely to progress?

Sorry if all this has been asked before.

[Hidden]

First of all can I say that there is a lot to digest (no pun intended) in your question, so I will try to answer some of it. I have a rare liver disease and it has been managed for the last 9 years with meds. However, about 6 months ago, I contracted food poisoning (twice in a month) and it took quite a while for them to get me back into the normal range for my LFT's (Liver Function Tests).

In the meantime, my liver became decompensated and I developed ascites (although I was not drained). I also received a UKELD score similar to your own, but like yourself, will not go onto the transplant list just yet. I am now thought to be compensated, but my Consultant is keeping a close eye on me (every 3 months currently) and I have been told that I need to avoid infections!

Whilst the phrase "end stage liver disease" makes it sound as if you are going to die at some imminent point, this is not the case. As my consultant agreed, this is a very unfortunate phrase and needs carefully explaining. Since they don't seem to have identified what is wrong with you, I would first of all get them to diagnose the issue. Once they do that, then maybe they can give you a clearer picture of what the future will hold.

With regard to the encephalopathy, once they get the ascites reduced and under control, then this symptom could well disappear. I never developed it, so can't say for sure, but I know there will be others who can comment on this.

I developed other problems, non liver related after my food poisoning, so it took me a full 6 months to feel better and back to what is normal for me. As for what may happen in the future, all I can say is that I have been told another dose of an infection is likely to project me onto the transplant list, something that I am keen to avoid for as long as possible. In the meantime, I am living normally and back to being managed through my meds.

Some of how it goes for you will depend on what exactly is wrong with you and how you respond to the meds.

I wish I could be more helpful, but take heart from the fact that there is a good chance that once they have identified what has happened, they will get it under control. If you feel that you are getting nowhere, then I would ask for a referral to a hepatologist.

I wish you all the very best

[davidh1965 in reply to Hidden]

Hi

Thanks for the reply, could you confirm if you were tested for HE. I have no symptoms and the consultant seems to be looking for evidence that I have it at a subclinical level i.e. very subtle and showing no real signs of being there, not sure why or how this achieves anything?

Probably should be a lot more worried about the diagnosis but in the very short term, no licence = no job = no house.

Still trying to get my head around everything but it’s a lot to take in. Once theory seems to be that I went deep diving with fluid retention already there and the increased pressure caused the fluid to free flow around all the cavities. Catching norovirus seems to be a bonus at the moment that just about finished things off!

Still on the positive side I have an understanding employer to a point, but that may change if it becomes evident that the condition is ongoing and life changing.

Thanks Dave

[Hidden in reply to davidh1965]

Not tested for HE- don't know they do that. Mine was by observation only! I don't know what subclinical level means, sorry!

I've had 9 years to get used to the idea of my liver being attacked by my own body continually, but still when someone uses the phrase "end stage liver disease" it is a massive shock. I can imagine how difficult it must be for you to take everything in.

The only reason I mentioned diagnosis is that you don't seem to be on any steroids or immune suppressing drugs. It is possible that you have developed an autoimmune disease, which is what I have, and this could have caused the damage to your liver without you being aware of it. By the time I was diagnosed I was jaundiced. Liver problems can go largely unnoticed and then present as severe, hence my mentioning getting a diagnosis. Totally appreciate that the job situation is more pressing. When I was diagnosed initially, my consultant advised going back to work straightaway, even though it took them 9 months to get me off the steroids.

Hopefully if they work out what is going on, your liver will start to perform better and you will get back to work. Good luck

[davidh1965]

Thanks for your help, will follow things up. Best of luck going forward.