British Liver Trust
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decompensated cirrhosis

Hi everyone

I'm new here. Last month I was diagnosed with decompensated cirrhosis, spent 10 days in hospital and had 10 litres of ascites fluid drained. It's a gastroenteology dept. & the consultant who's not a liver specialist said there's no need to refer me to a specialist liver unit & need for transplant can be reviewed in 2 or so yrs. This conflicts with all I've read on-line. Very worried- any advice please?

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Have they identified the cause of your cirrhosis? Have you any other ongoing symptoms? Is there a care plan in place regarding the management of further episodes of ascites.

My hubby was never referred to a transplant unit when he was first diagnosed with cirrhosis following a massive uppper GI bleed in April 2012. His biopsy wasn't too conclusive but they labelled his auto immune cirrhosis. He left hospital with no meds other than lactulose & omeprazole. He continued to have banding locally but when we discussed referral to his consultant (a gastroenterologist) he felt it was time for hubby to 'touch base' with the transplant unit (finally got there in June 2013) - they then took over hubbies care with local guy still being seen just to be 'kept in the loop'. He was only assessed and listed for transplant a year later - although delisted after 10 months because he was deemed too well for t/p.

I think you do need to request (perhaps in writing) a referral to t/p centre even to 'touch base' at this stage and see what they can offer in a way of monitoring even if they do not yet think you are at the stage of requiring transplant. Certainly the Scottish Transplant Unit have a statement on their website that they prefer to see patients early rather than too late.

With a diagnosis of cirrhosis you need to have regular monitoring 3 or 6 monthly blood tests and a 6 monthly ultrasound to check for any changes in the liver and other organs.

Take ownership of your condition and gently push for the care you desire, if you are in the UK you are allowed a 2nd opinion by right anyway. I've just had to write a letter to hubbies local hospital (last consultation November, due another March 2018 and it's just be cancelled and rearranged to January 2019 - with no mention of monitoring between now and then ............ NOT HAPPENING!! Letter sent!).

Wishing you the very best of luck, Katie

p.s. I ask the cause because if alcohol was or is a factor there will be a 6 month (minimum) period of abstinence required before T/P unit would consider you for assessment. So, local doctors won't generally send someone if they are still actively drinking. I don't assume that this is your cause at all ............ my hubby is t-total and he still presented with end stage cirrhosis.

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Tank you Katie- I'll certainly be seeking a second opinion.

All best wishes, Sally

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Hello sallyjohnson,

Really sorry to hear you've been so unwell lately.

You are in good company here, with those who have been where you are now, have made a recover, adapted to living with the illness or are caring for those with liver disease. I had a liver transplant in 2016.

The National Institute for Health and Excellence (NICE) issued guidelines in July 2016 indicating that anyone diagnosed with cirrhosis should be referred to 'a specialist in hepatology' ( section 1.1.10)

nice.org.uk/guidance/ng50/c...

That suggests you could go back to your GP and request a specific referral to a hepatologist and not to a general gastro-intestinal consultant.

Ten days in hospital and the amount you drained sounds like you do have a serious problem. I can certainly understand your concern.

See your GP for help in fully understanding your illness and exploring how to manage your condition. At the same time, make full use of the wealth of information on the British Liver Trust website.

britishlivertrust.org.uk/li...

Keep in touch with the forum and let us know how things progress.

Take care,

Jim

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Thank you Jim,

I read that NICE guideline too- will be acting on this.

All the Best, Sally

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Yes, definitely go for a 2nd opinion, some of these consultants treat you as though you are just another number in their list. I know there are alot of fantastic consultants out there too. Take care. Lots of love Lynne xxxx

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I went for a second opinion to sliver specialist/liver transplant unit and after lots of blood tests they told me I am too early for a transplant. They suggested twice a year monitoring in case my MELD scores change.

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Hi

How do you feel now, do you feel more reassured? Take care xxxx

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Yes I do feel better. At one point, when my GI said to me there is sways the option for a transplant, I felt depressed and guilty. Now, with the kind words and realistic outlook of my disease from the specialist, I feel much more motivated to take care of myself. Have they told you what is your MELD score?

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