Hi all its been a while since I last posted and tbh I didn't think I would be postin 4 years down the line but there you go.
Ill try keep it simple
So my dad was diagnosed with end stage liver disease (due to local hospital not managing his methotrexate administration correctly) in Feb 2014 and was told he had around 6 months to live. He had lots of tests and was found to be ineligible for transplant or TIPS.
A few months later he had ascites build up and had to be drained every 4 weeks or there abouts, for around the next 14 months - so till around Dec 2015.
All of a sudden ascites stopped and he went on to needing blood transfusions every few weeks then every couple of weeks over the next 9 or so months. At the beginning of this year he was not needing draining or blood transfusions...up until around May/June time when he started to fill up again and we went baxk to needing to have him drained.
We see consultant every 6 months and when we went earlier on this year they didnt really know what to say as nobody expected him to be here so just said to keeep doin what we are doing and take each day as it comes.
He has been in a wheelchair throughout this 4 year period due to extreme weakness and being unsteady on his feet. We have carers come daily for him and twice a week to sit with him to give my mum, his FT carer a much needed rest.
He is on refaxamin for his H.E..something i requested after speaking to a family of someone going through similar situation where they live abroad.
I personally have seen a deterioration in him these past few weeks and i am concerned there may be no return this time. I had to call the doctor out yesterday as he couldnt stand, was really confused , had had chronic diharrea for 2 days and was just not with it at all. Dr came and then spoke with hospital who decided to admit him.
His stomach is swollen again but consultant at local hospital told him at an appointment last Thursday that it was not ascites. They kept him in last night and tonight n he has had an xray which came back clear but then had a scan which showed he does have a build up of fluid but it is scattered all over and they r going to be removing it vy puttin needles all over his stomach - (rather than the usual draining procedure he has always had prior).
So my first question-
What is this needle procedure, how does it work?
Why are they just not draining him like they have many times before?
Thry said on the scan that the fluid is scattered all over and not in the usual place it is. Why is that and how has it happened?
We dont really know whats going off, my mum is an emotional wreck most of the time and we dont know where we stand with anything. It's like a guessin game.
Does anyone have a fairly similar experience or can offer advice?
Do u think it could be drawin near? We're so worried this is it.
Sorry to ramble i was tryin to keep it short !