British Liver Trust
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Hiya, my name is April. I have cirrhosis but not sure how bad yet. I have results of a CT triple liver scan on 24th of this month. I have lots of cysts (one is bleeding out) ans lesions on my liver, again will get results on 24th. I had CT on 26 March and Endoscopy on 28 March. Endoscopy revealed no varacies Or ascites however it did reveal a tummy infection which is being treated with PPI’s for 6 weeks and could develop into tummy ulcers. I had a pre-op assessment and the nurse confirmed I had cirrhosis but wouldn’t tell me anything else and said I had to wait for my consultant. I have awful nausea which laid me up in bed all day on my birthday and I’m exhausted all the time (although I do have 3 young children and work full time) my toes and feet are very pale too. I just wish I knew how bad it was. :-(

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When you see your specialis, ask them what is your MELD, Score or whatever scoring system they use in your area. They base it in liber blood test results and other factors. That way the doctor can make a plan of care for you.

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And your child PUGH score. I don’t know if you use them in the UK or US? 1 means really good and 3 means oops! There is something serious here.

Hope that helps.

Cheers,

Brett

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When you say 1 is really good, does that mean there is nothing wrong?

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Hi Jm,

No! 1 is a good score, it means a longer life expectancy than 2 or 3. It still means cirrhosis though.

Cheers,

Brett

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Am I correct in thinking that the score will change if Decompensated and change back again if going back to compensated?

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It is one aspect that they measure.

Have a look here;

en.m.wikipedia.org/wiki/Child–Pugh_score

Cheers,

Brett

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Doh! The link won’t work for me? You might have to type it in?

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I was told ages ago I had fibrosis/cirrhosis and was never given a MELD or any other score. The only reason I have now been given a UKELD score is because I had a recent episode of decompensated cirrhosis. As for how bad is the cirrhosis, it is not staged, it is either compensated or decompensated. Ask your specialist to explain what this means. Now that I am compensated again, I have not had a further UKELD score and am monitored closely by the team at the QE, one of the leading teams for my condition of AIH. Of course, if you have cirrhosis as a consequence of some other condition, then you may well be treated a different way, I'm afraid I can only comment on how it has gone for me with my auto-immune condition. All the very best getting the answers you need :)

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My hubby also has cirrhosis due to auto immune hepatitis and has never been given any sort of score & no one has ever discussed 'how bad the damage is'. Even when listed for transplant we were never told what he scored on the UKELD scale (we were only ever told he was borderline for transplant so must have been on or around the 49 minimum UKELD score).

You are right in saying cirrhosis is either compensated or decompensated BUT there is also a staging scoring system called the Child Pugh Score which assesses the severity of the cirrhosis. It takes into account Total Bilirubin, Serum Albumin, INR (Blood Clotting time), presence of ascites (at what level) and presence of Hepatic Encephalopathy (at what severity). Each of these is given a point score 1, 2 or 3 and then these points are added together to reach a total. A score between 5-6 gets classified Child Pugh A (least severe amount of damage and longer anticipated survival rate), a score of 7-9 is classifed Child Pugh B and Child Pugh C is any score of 10-15 and is the most severe level of damage and has the shortest anticipated survival rate).

Some people (like Brett11) do get told their Child Pugh score and what stage of cirrhosis this represents.

Katie

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Ah- the plot thickens. As always Katie, you know way more than me and I stand corrected. However, I have to add that I have been told that I will at some point be listed for transplant and as such no mention has been made of the Child Pugh score. I have also been told that the new system for deciding who goes on the transplant list will depend only on the UKELD score and so won't necessarily help people like me who have a rare form of the AIH, since the ascites and other things now will not be taken into account. This is how I understood it from my last chat with Prof. H. so, it looks as if the new system won't be taking into account the Child Pugh score. It is something I will obviously need to ask about at the next meeting and get further clarification on :)

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As I understood the new system UKELD isn't the be all and end all anymore whereas before (unless you had cancer where UKELD was discounted) you had to score over 49 to even be listed. There were people with PBC and other conditions who were seriously symptomatic but didn't score the necessary on UKELD. They are more likely to get transplanted on the new system and hopefully this would be the same for yourself if it comes to that. As someone also recently discovered, the 'new system' only covers those livers donated from brain stem deceased donors, those donated by cardiac deceased donors are still allocated via the old, local systems rather than this new 'national allocation' system.

My hubby was listed for 10 months on the old system - he has cirrhosis due to burned out AIH. He never knew he had any issues until presenting with late stage cirrhosis, no typical AIH symptoms. He was always told he was borderline and eventually he was taken off the list because his bloods normalised and he lacked the major symptoms - no serious HE, no jaundice, no ascites.

Fingers crossed if it does come to transplant for either yourself or hubby then transplants will be forthcoming.

All the best, Katie

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Hmmmm! This is all very confusing, since it is not the impression I had. However, since a transplant could be way off (I will definitely have to have one I have been told), then I have not really wanted to think about it very much, so haven't really investigated it. Now, however, I need to get some answers. Thanks for the info Katie, it gives me a lot more questions to ask. :)

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The British Liver Trust page recently covered the new system for liver transplant and it does state that the old system was based on the 4 patient criteria that made up the UKELD score whereas the new system now matches 7 donor characteristics to 21 recipient characteristics to make the best match. PLUS a certain percentage of donor livers will be reserved for recipients who don't qualify on the above basis (something they refer to as variant syndrome patients ......... currently 3% of the waiting list).

BLT page on the subject is at:- britishlivertrust.org.uk/ne...

Details of the new matching system are at:- nhsbtdbe.blob.core.windows....

Clear as mud - just hope that the right info is inputted into the system and people do get their shot at a new life (in time and successfully). The one thing the new system takes into account which the previous one didn't is waiting time so perhaps thats a good thing.

Fingers crossed if the time comes all does go smoothly.

Katie

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Thanks for the pointers! As I said, because it's not yet on the horizon (but could happen overnight), then I'm not looking into it too much yet- don't want to scare myself. Think I'll stick to knowing what I need to know for now and hope that the operation table is a long way off!! All the best to you and hubby Katie :)

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Hi Katie,

My PUGH score started at 3 then went 2/3 then 2 then one then back up and down again. It gets confusing as it is never static.

Cheers,

Brett

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Because your Child Pugh score is calculated based on things that do change - the various blood levels, how well ascites and HE are managed then you will score differently at different times if these things change. Like I said earlier my hubby has never been told any of these scores and we just get on with what each day throws at us without bothering about levels, scores etc. etc.

Katie

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Try not to think about it too much, you'll make yourself ill just worrying about it. In the meantime get a notepad and write down your concerns and questions you have and take it with you when you see the consultant. Go through the list with him and write down the answers to help to put your mind at ease. Take someone with you too if you can as 2 pairs of ears is better than 1. Dont worry about whether you are spending too much time with him.... it's your body, your health and if there are any concerns you need to know what they are and what both they and you can do to make you better.

All the best and please keep us posted☺

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