I am new to the web site my partner Colin has chronic liver failure.I am finding it a little difficult to cope as I dont know What to expect

[Colin4eileen]

Does anyone know the best helpline to use to get advice on what I can expect to happen in terms of Colin's condition?

[AyrshireK]

Hello and welcome to the forum, sorry circumstances bring you here but you will find lots of folks on here in a similar situation to yourself - desperately looking for advise. If you've specific queries then post up what you want to know, no two cases seem to be the same and treatments around the country seem to differ but you'll definitely find lots of help and support on here. I myself am the wife of a lovely guy who unbeknown to either of us has suffered cirrhosis of the liver caused by some sort of auto-immune condition, we only found out he was ill after he vomitted blood and it showed that he'd got portal hypertension, bleeding varices and we've had a mixed year and a bit since diagnosis - finally getting referred to the Scottish Liver Transplant Unit in Edinburgh and although not yet on the list we've been fortunate that he is now under the care of a proper liver specialist rather than the local gastroenterologist who wasn't really the man for the job. At the moment hubby is compensated and thankfully not at the 'failure' stage but if you have specific questions which I can help with then i'll look out for them and will offer advise when I can.

All the best to you and Colin,

Katie

[Ruby52]

Hi I put in liver failure & it came up with lot's of choice's from the start to how it ends. In the latter stage your tummy swells, poo go's a lot lighter, and you have a feeling of having the flu. When I wake up all my joints hurt, head pains, even my teeth hurt and just washed out, just like the flu, then 2-3hrs later I fell fine, as I can be, still fat lol. I don't know how far he is I have decompansated liver, and was told in Nov last yr that I had 6mths at the most, and I'm still here for now. Let me no if you find a site you are looking for xx

[gamesmaker]

HI -as has already been said, the advice and treatment differs across the liver units. Is he seen in a specialist liver unit under the care of a hepatologist - he should be, rather than at a general hospital. I would initially ask at the hospital your partner goes to if they have a specialist nurse service - who would have access to your partner's notes and also to the team who are treating him. Some units do have this service and some do not. Another hint is to take a note-pad and pen to every out patient appointment and before you go compile a list of the questions which you want answering. If he is happy for you to go along - always go together to the appointments as two pairs of ears are better than one, and take notes from what you are told by the consultant. Ask for copies of all letters sent to his GP and also the blood test results - keep these in a file at home for cross reference. The British Liver Trust leaflets are available on line and are very helpful. Otherwise it is a case of us all helping each other. Unfortunately liver disease can become advanced before we get symptoms. We are all in this together. Good luck! We may all have different liver diseases but there are some common factors.

[Hidden]

Hi Eileen

Looking at some of the reply's I'm sure they have scared you to death!!

But as one said we are all different as is the treatment.

I'm not sure what caused Colin's condition but in my case it was mainly alcohol there was another underlying problem which didn't help, but here is how it went for me.

I was told I had a bad liver in July 12 and instantly gave up drinking I seemed ok till in October I attempted to lift something up at work and I couldn't lift it, I just shrugged it off and didn't pay it any mind, then in Jan this year my stomach swelled up a lot and went as tight as a drum I was then admitted into Whiston Hospital where I had my stomach drained, a scary time till you have had it done as it hardly hurts at all, I thought it was going to be very painful and I was very wrong hardly any pain

Shortly Dr Fox at Whiston told me my liver had not long left and my best chance of survival was a transplant!! Which was not what we expected to hear, far from it and there were tears (the first of many)

I was eventually sent to Leeds (outstanding team pure class) for an assessment and questions etc, and then I was eventually put on the list in mid June and had been told of all the pit falls etc, and then low and behold on the 2nd July just over two weeks later I had a transplant and I came out of hospital after about 10 days, and so far so good, so there is some light at the end of the tunnel as I and many others would testify, it's just down to luck and donors, so as difficult as I know it is keep your spirits up and encourage Colin to tell the Doc of any changes including poo colour appetite just anything that's not the norm for him, and cath said make time for yourself to catch your breath and good luck

Richard & Cath

[Bolly]

Hi Eileen. As your initial enquiry was for a helpline, you could try the British Liver Trust information line on

0800 652 7330

This Health Unlocked site is supported by the British Liver Trust, and as gamesmaker says, they have lots of useful leaflets on all types of liver disease (whichever 'type' has caused Colin's liver damage I'm sure they have a leaflet for it). They also have a fantastic website at britishlivertrust.org.uk