Liver

[Williamsbluefamily]

Just wondering if anybody has been sent to marie currie, my liver disease has gone to the part of can't do anymore .

[AyrshireK]

Sorry to hear that they've said that there is no further treatment. I know in a previous post you said you couldn't have a transplant - who made that decision? Were you ever referred to or seen at one of the transplant centre's for a transplant assessment?

I know there are some automatic barriers to transplant such as cancer outwith the liver, obvious heart and lung problems, ongoing drug/alcohol use and such like but in the absence of these you should have at least been seen by transplant unit for a possible assessment but you've never said if this had happened.

Katie

[2022minks]

Hi there, alot to take in when there are no procedures or changes that can improve your livers health. I can only give a perspective from a carers side, my mum was diagnosed at decompensated stage and not eligible for a transplant, mum went onto survive 5 years. We were very much on our own for most of that but when mum was in her last 8 months the district nurse team were great and helped monitor and deal with daily health issues. The hospice team all though in the background got involved in mums last 3 months and started with 1 daily visit to 2 and this really kicked in as mum was now bed bound. All I can say is care for end of life liver disease kicked in and although I was mums full time carer they helped to guide us and mum so that she had a peaceful death at home. The pallative teams are excellent and very lovely and hospice can offer many services for the patient and family. We didn't have Marie Curie, ours was the main hospice for our area. Your liver disease pathway with your hospital consultant should forward you to meet a pallative nurse even if you are not ready for their care yet, they will be able to explain what care you can get. Sending you lots of ❤

[Williamsbluefamily in reply to 2022minks]

Thank you for your lovely words I have met the pallative nurses already loveCheers

[Readlots in reply to Williamsbluefamily]

My experience with my Mum echoes 2022minks. Marie Curie nurses are fantastic. You’re in good hands.

I wish more people knew to access palliative care sooner. It can run alongside the transplant process and gives so much support. You will meet some wonderful people. Im glad they are there to take care of you and your loved ones.

[2022minks]

Glad you have met them, of all the nurses we saw all were excellent you will be in good hands when you need them. Hope you have a loved one or family around you to help, and don't let your prognosis stop you from doing things you want to do xx

[BritishLiverTrust6 Moderator British Liver Trust]

We are sorry to hear this. If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).

Best wishes

British Liver Trust

[Roy1955]

Call them and ask.

0800 090 2309