Please note: this patient story follows a terminal diagnosis
When Michelle’s dad was seriously ill in hospital, she was concerned about the lack of communication and information she received from the medical staff. The British Liver Trust’s Nurse-led Helpline helped explain the diagnosis, symptoms she should look out for and the care that should be in place. Thank you for sharing your story, Michelle
My Dad had always been a social drinker until he got Covid twice which developed into long Covid. With being home alone all day, his drinking became more severe.
He went back and forward to the doctor and was in hospital a couple of times. The admissions must have been linked to his liver, but I don’t know what tests they ran because six months later he was gone.
Dad was then admitted due to a high heart rate and his partner and I were told he wouldn’t last the night. I know they have to prepare you for the worst, but they could have said: ‘We’ll see how the night goes’.
Dad got through that night, but was worse the next day. The whites of his eyes were yellow, there was swelling in his tummy and legs, he was shaking and twitching and was very confused and hallucinating. He had stopped drinking a few days before and the doctors said he shouldn’t have done that without support because it accelerated his symptoms.
Different consultant every time
They drained him and tried giving him Laxido to flush out the toxins, but he kept spitting it out and the doctors said he could end up in a coma without it. He did eventually start taking it.
Communication with the consultants was really poor. Dad was in the hospital for at least a month before we even knew it was cirrhosis and the only way I could speak to someone was by demanding it. It was a different consultant almost every time and having to retell the same story was upsetting.
I contacted the British Liver Trust’s Nurse Helpline because I didn’t understand a lot of the medical terms the hospital used and they were really good in breaking that down. They also explained that his confusion was connected to his liver. I Googled cirrhosis (I know you shouldn’t) and found there were different kinds, so I contacted the helpline again and they were really helpful.
We should have had more information and at least a couple of check-ins from a doctor. They could have told us what symptoms to look out for and when to call an ambulance, but all we had was information I found myself on the British Liver Trust website.
After six weeks Dad was transferred to the local community hospital. They were trying to get him on his feet and walking so he could be discharged, but there was no care in place once he was home and Dad became bedridden because the muscles in his legs weren’t working anymore. No doctor came out to see him and I couldn’t get anything from the GP such as support from district nurses. Dad was just left.
We should have had more information and at least a couple of check-ins from a doctor. They could have told us what symptoms to look out for and when to call an ambulance, but all we had was information I found myself on the British Liver Trust website.
Dad was quite a closed man so never really spoke about what his illness and prognosis meant to him, but did get upset a few times because he felt he was a burden. We hoped that being home might bring him some comfort and his partner got carers in to help, but they were awful initially – they would make his food, but set it where he couldn’t reach it.
Dad’s liver failure progressed and his kidneys were also impacted. He stopped eating and was drinking very minimal. I called the Trust’s helpline again towards the end to ask what we should look out for and anything I could do to get care in place. They were really helpful and gave me a breakdown of what I should ask for. Now the district nurses finally started coming
Sadly, Dad passed away at home in September 2025 – he was only 68.
More compassion
We needed more compassion than we got. Maybe it was just in my head, but I felt like Dad was treated like an alcoholic who had brought it on himself. Ok, he drank too much and it could have been avoided, but he didn’t choose that life, it was an addiction that he needed help with. I’m now seeing a counsellor for support and while I’m sharing my story to help others, it’s also good for me to get it all out.
I decided to fundraise for the British Liver Trust by running two 10k events. The second race was after Dad had died and was quite an emotional one. Because it was so personal to me, people responded really well and I raised £770.
Cirrhosis doesn’t happen overnight and by the time the symptoms appear the damage can be irreversible. If you suspect someone in your family is drinking too much, it’s a conversation you need to have, even though it’s uncomfortable. We didn’t and if we had said something sooner, perhaps more could have been done.
Look to the health professionals to make sure that you’re accessing the information, help and support that you should be, so your loved one gets the best care. If it’s coming to the end of life, I would definitely recommend the British Liver Trust helpline because that was really helpful for me.
