Palliative Care and Liver Failure

[Magpie25]

My brother was discharged from hospital in June 2024. He had been having treatment to optimise the chance of a successful liver transplant. He has a decompensated liver. After months of 'treatment ' he was deemed too high risk to have the operation.He is now in receipt of palliative care.

On hospital discharge we asked re his life expectancy and were told 5 to 6 weeks.

He's still alive and although not a well man, he is jaundiced, has ascites, fatigued and suffers from bleeds and pain He's deteriorated only slightly in the 10 months or so he's been home.

My question is, how has he lived so long ?

I'm so happy he's still here but so worried that he now receives only palliative care and something might have been missed. He doesn't want to return to hospital as his quality of life there was so poor.

[Breakfastbabe]

I'm afraid I can't answer your question but sending you love and hugs in this stressful time for you and your family.

[Hayward2015]

Dear Magpie. This is my first post but it has inspired me to write to you. My heart goes out to you. My brilliant brave husband was diagnosed with decompensated Liver disease (cirrhosis) in March 2022. He was extremely poorly after a bleed from varices and also had ascities and jaundice. Fast forward 3 years with lots of lifestyle adjustments and constant monitoring he became compensated and lived life to the full and we started assessment for transplant to maximise his chances of a long life. Very sadly a month ago he started with extreme abdominal pain and we went to A&E. After tests and scans we were dealt a huge devastating blow and he has invasive Liver cancer that is not treatable and we have been told he has just weeks to live. Now we are receiving palliative care. Like you and your dear brother we are uncertain of what to expect and quite honestly terrified!

I just wanted to reach out to you as I relate so much to your struggle with this awful devastating disease.

Sending love

Kim

[Zoe2022]

Hi Magpie. I am in the same position as you. My husband was discharged from the transplant assessment in Sept 24 due to being too frail to undergo a transplant. He was referred back to our local hospital gastro team for his ongoing care. We were told without a transplant he only had months to live. He now has palliative care. Then in January after he started to deteriorate we were told he only had weeks. But recently he has improved, he has a really good appetite, no pain, no nausea, but still very fatigued. He recently celebrated his 70th birthday which i didn't think he would be here for. Our family are so pleased he is feeling better but It has been very hard to be expecting the worse since September. We are all living under a cloud and know he will not get better without a transplant. Best wishes to you and sending a big hug. Karel

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Magpie25

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday 9am to 4pm on 0800 652 7330 excluding bank holidays.

Best wishes,

British Liver Trust

[2022minks]

Sending you all much love when on the pallative path. Livers are very unpredictable and although liver disease on a pallative path follow a similar pattern everyone's journey and length is different. Being given a timeline is only their assumption, the reality can be that patients can live longer than expected where as some have no time at all. The pallative teams and community nurse teams will be monitoring your loved ones health and there will be certain things that start to decline when your body gets nearer to end of life. So if they are saying they are doing OK and not entering that phase yet then try and make time and memories. Much love xx