End stage liver disease and Ascites

[amc78]

My dad has end stage liver disease, he has been in and out hospital since Dec 2019 with Ascites worsening each time, has had multiple abdominal drains during that time... he is very weak and a few weeks ago was admitted after vomiting for a few days which was back vomit, I thought this was it but he has fought on.. he got drained last week and normally would take a few weeks before needing drained again although this time he has only lasted 1 week before having to go back into hospital for a drain... I don’t feel the doctors are telling he everything, I have read the leaflets that the British liver trust sent me and looks to me that my dad is having palliative care but that’s not something that’s been clearly discussed with me... it’s getting more difficult, he is needing more care... Covid making it more difficult to speak to a consultant. I am trying to get dad rehoused as he living in a flat that’s not suitable for his needs.. don’t know where to turn... has anyone any experience of increased amount of drains and is this the liver getting worse the more often he needs a drain?

Thanks

[Xenom0rph]

Hi there. Sorry to hear about your situation, it sounds like it's very difficult.

If I may, as you don't mention, but what's the cause of the liver disease? Alcohol? Medication, hereditary?

I am at a stage where I'm super paranoid about missing something and have been feeling bloated and my worst fear is Ascites.

I do have a contact email address for my could try consultants secretary; is this an option for you? It sounds like you need urgent and detailed help to care for your dad but are struggling to see the woods for the trees. Some GP's are taking calls now and this sounds serious enough to regard his care and current condition as extremely urgent with critical care needed asap.

Can you lift the phone to your dad's GP and if not getting a satisfactory result you could try just turning up to A&E - like the media says "if it's urgent, it's urgent".

Good luck!

[Hidden]

Good morning,

I am very sorry to her that your father is so unwell. It is absolutely essential that you are given the chance to meet or t the very least speak with your father's medical team to discuss his current state of health and prognosis. The fact that the drainage of ascites is having to happen more frequently is a sign that his liver is really struggling. If your father is in the end stages of his liver disease and palliative care is the decision then you should be told that and adequate plans need to be put in place eg will he need to go to A and E if he needs draining ,will he be admitted automatically without having to go to A and E. Some centres do consider the use of a permanent drain for the ascites - this can be managed at home either by a district nurse or the patient/relative and it avoids the frequent admissions to hospital. Although community palliative care teams are generally associated with cancer patients this is not their only role - anyone with a life limiting illness is in theory entitled to their input. It may be worth looking into a care package for him. This website may help:

nhs.uk/conditions/social-ca...

If your fathers days are numbered then the quality of the time he has left is a real priority.

regards

[Dizzie14 in reply to Hidden]

This is a really useful site with so many ideas to support loved ones at home.