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?
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.
Tank you Katie- I'll certainly be seeking a second opinion.
All best wishes, Sally