Decompensated cirrhosis/pancreatic cys... - British Liver Trust

British Liver Trust

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Decompensated cirrhosis/pancreatic cyst/Alpha 1 advice/experience

VickySusan
VickySusan

Hi there!

My dad was diagnosed a month ago with decompensated liver cirrhosis, which we now know was caused by Alpha 1 anti trypsin deficiency. Never drinks, never smokes, was fit and healthy until a couple of months ago where he took a steeper decline than Everest.

This was found as he was been assessed for a pancreatic cyst which is sitting in the head of his pancreas. He now has ascites, which has only just started to respond a little to medication. His Oedema decreased after a drain where they took 10L of fluid (there was more but his blood pressure was too low). He has oesophageal varices and a Child Pugh score of 10, MELD 17.

He has been in hospital due to a flair up of pancreatitis caused by inflammation from his cyst. But since the drain he has been eating well (before the drain he was struggling for 500kcal a day) and I had seen a massive improvement in his general everyday health, breathing is easier and he is less tired etc.

We have been told he needs a pancreatic resection to remove the head of the pancreas where the cyst is and rewire it effectively. But that due to his liver, he is not able to withstand the operation and will unlikely even wake up. But we have also been told that although he needs a transplant, he cannot have one while he has this cyst in his pancreas. This is due to the possibility it could turn cancerous and the immunosuppressants he would need to take after a transplant would ‘help’ the cancer spread/attack if it did.

I genuinely feel like we’re between a rock and a hard place, a catch 22. They can’t fix the pancreas because of the liver, and can’t fix the liver because of the pancreas!

6 weeks ago he was still working, up and down the stairs easily, looking after himself, living a normal life, and now it’s the opposite, in such a short space of time. I’m struggling to come to terms with it. As well as finding out my brother and I are at the very least carriers of Alpha 1 (meaning my children potentially could be too).

The consultant, although very good and really informative, is unwilling to even discuss future options until we improve his symptoms and his health if possible. But I’m finding it hard not to know if there are any possibilities at all, let alone options.

I realise there’s unlikely to be many with the exact same situation as my dad, but any advice/experience in any of this at all comes so greatly appreciated.

Also, Child Pugh 10, and MELD 17, how is that in comparison to others with varying degrees of cirrhosis? And I know it’s so hard to tell, but life expectancy is something I am obviously really worried about, any thoughts on that are also welcome.

Thank you in advance

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