Steve experienced hepatic encephalopathy when his liver started to fail. He's shared his story of alcohol-related liver disease and how the British Liver Trust's support groups have helped him. Thank you, Steve.
At the British Liver Trust support group there is no stigma.
I’m Steve, I’m 58 and from Lancashire. I’ve always had a busy and stressful job as a salesman. Living on my own, the responsibility was all mine, but I’ve always been a cheerful person, just getting on with things. I didn’t notice that I was taking on too much, and perhaps relying a bit too much on alcohol at the end of a hard day, to take away some of the stress.
I knew there was something not right with me in December 2019. My mum sensed it too, as she came for Christmas and would normally go home on New Year’s Day, but this time she stayed around for a bit. It was just as well that she did, because on 5th January I went upstairs for a shower and didn’t come down. When she came to check on me, she found me hallucinating. It turned out to be a symptom of my liver failing - hepatic encephalopathy (HE) - as the toxins were in my brain. I was also yellow from jaundice. She called an ambulance. I remember that, but nothing after.
I was admitted to hospital and ended up in what I can only describe as a ‘coma’ for five days, and the staff told my mum that they didn’t think I was going to make it, and I had maybe two weeks to live. When I came round, I found out my liver had failed, and I vowed that I’d not touch alcohol again. I hadn’t realised how bad it had got and it was a real shock.
One morning a nurse round with the breakfast, saw me and hugged me. She had been on duty when I had come onto the ward and she was really pleased to see me still here! She said I was a much better colour. On the ward they called me the ‘miracle man’. I’d had a real wake up call, and I’m lucky my mum was there when it happened.
I was still really ill and it was pretty undignified, not being able to look after myself, and using a Zimmer frame to walk. But I was determined that I was going to get better, leave hospital and never need to go back. In the end I was there for four weeks and then I was discharged home. I promised myself, the staff and my mum and my daughter that I would get better.
Life was very different. I’d had a busy job, but that was gone. I was too ill to work, and there was a lot to sort out at home. It took me a while before I started trying to find out more about my condition.
What I found online was mostly American videos. They were OK, but what I really wanted something from the UK. Then in January 2021 I found the British Liver Trust online support groups.
To start with I was really frightened about attending, but I spoke to Amy who manages the groups, and she was really friendly. She had to coax me basically. She said, log on ten minutes early and we can have a chat, and then if you feel able to stay on and meet the others you are more than welcome.
It’s crazy really because I was a sales manager for years and I’ve been in lots of meetings and run presentations, yet here I was feeling frightened to death. The meeting started and I must have looked like a rabbit caught in the headlights. There I was looking at all these people on the screen, and then each person introduced themselves and said a little bit about themselves. I don’t know what I had been expecting but everyone was totally normal!
I remember listening to their stories and getting really choked up. I was thinking “That’s me! That’s me!” They were all so welcoming, I felt I belonged – if that doesn’t sound daft. I knew I’d found the right place for me to progress as a person.
Amy from the British Liver Trust commands the meetings really well. She makes sure everyone has a chance to speak. I learn something every time I go. I met John, who is also a liver patient, and he has been volunteering with the British Liver Trust as, what they call a ‘peer mentor’ – basically someone who has been through it, and wants to help others. He told me – and I’ll never forget – he said: “Three things Steve. You have to stay positive. You have to want to do it. And you have to do as you’re told!” My mum laughed when I told her because she thinks I’ve never done as I was told my whole life! But what John really means is that I have to take responsibility for making things better for me. I know I’m not going to ever beat it entirely, but I am going to fend it off!
That’s another big part of this process: acceptance. In the past when people asked me what was wrong with me, I never said decompensated liver and hepatic encephalopathy because of the stigma. We all know someone who’s had a new knee or a new hip, and when they mention it other people are full of advice: "Oh, have you tried this medication, or that exercise?". But if you mention a liver condition, they’ve basically already made their minds up. They have preconceived ideas. So you can’t talk to anyone else about it.
But at the British Liver Trust group there is no stigma. Everyone is just normal. People are honest and open, and that makes me want to open up more. You don’t feel judged. And the group isn’t doom and gloom. Don’t get me wrong I get ‘down’ days. But when we are in the group we talk positively.
Alongside the groups I’ve got a lot out of the webinars. I went to the one that Amy ran about sleep, as I really struggled with insomnia, and she gave us all some tips, and they actually work! And there was another one run by a dietician, and I found out what foods are actually good for my liver, in moderation of course. As a result I’ve made significant changes to my diet. I cut out salt and sugary yoghurt, and make sure I have more green veg. I now make my own fruit yogurt by mixing Greek style yogurt with mixed berries. I eat nuts now and enjoy, in moderation, dark chocolate - I was never a fan before. I still like my treats of sweets but I am much more disciplined with meals. I do feel better for it and don’t feel so lethargic.
It’s not been an easy time this last year, but the knowledge I have picked up has helped me progress. It has been a lifesaver, giving me purpose. Other things have come up, unrelated to my liver, but still related to my health, but because I have coping strategies, I’m actually able to cope much better than I think I would have done. I became a Grandad in January 2021 and I want to grow old playing a big part in my granddaughter’s life.