Dylan’s story: “I wondered if I was a functioning alcoholic, but I got up every day and went to work five days a week”

Alcohol was a big part of Dylan's life and he drank for fun, never realising the damage he was doing to his liver. But a prolonged nosebleed on Christmas Day was the start of his journey towards a liver transplant and scans every six months to ensure he stays cancer free. Thank you for sharing your story with us, Dylan. 

People who drink too much don’t necessarily sit on park benches. Alcohol addiction isn’t always what we imagine it is. I drank because it was fun and everything I did was about that culture. My mum had an off license and any type of do revolved around drinking. When I grew up I would invite friends round and throw big parties and we were always in the pub.

After work I had 40 minutes before the train was due so I’d have a pint in a pub. When I got off the train I would meet my now ex-wife and friends and go to the pub for a couple of hours. At home I would have a couple of glasses of wine and the weekend was an excuse to get up, go out and start drinking. It was part of who I was at that time. Sometimes my ex-wife and I agreed we were drinking too much and we’d cut down for a short time but there was always an excuse to drink, like a birthday party, not that an excuse was needed.

An old friend and I wondered whether we were functioning alcoholics, but I got up every day and was at work five days a week. Although I would probably never have admitted it, it did affect my work. I would do as little as possible and lock myself away in an empty room saying I had stuff to get on with, but really I was terribly hungover and couldn’t wait to finish and go to the pub.

In around 2018 I started getting nosebleeds in the shower or when I was brushing my teeth in the morning, but didn’t think much of them. I would clean it up and go to work where I would get cramps in my hands, not realizing any of this was related. When my ankles started to swell I called the doctor who suggested I should elevate my feet and gave me some peanut oil cream for my nose bleeds thinking it was possibly an infection.

On Christmas Day 2019 when my family was due to come round for dinner my nose started bleeding. I must have used every single bag of frozen products we had in the house to try to make it stop, but it wouldn’t. When it eventually started clotting I moved very slowly and kept my head very still, but as soon as everyone left the bleeding started again – it was a horrible, horrible day.

My nose was still bleeding on 27th December and I started coughing up blood when walking round to my friend’s house. I told my friend it was old blood and I wasn’t bleeding anymore but he was worried, so my ex-wife phoned 111 and they told me to go to my doctor. My wife sat in the waiting room while I was in the toilet because my nose was continuously bleeding. As soon as the doctor saw me he shouted at the receptionist to call an ambulance and they took me straight to hospital where I was seen straight away.

I felt quite weak and frail and because I’d lost so much blood I needed a transfusion. I was admitted for three days and don’t really remember much after that. On December 31st I went back and a doctor asked me how much I drank. Because it was a safe space, I told him the truth – four bottles of Henry Weston cider and four pints of beer/ a bottle of wine a day and more at the weekends. After some scans he said I probably had cirrhosis and could never drink again. I would be sent home with all these tablets and needed to stay sober for three months when they would see me again. It was a huge shock. I contacted my company and was signed off sick for three months.

My last drink had been on 26th of December and I didn’t crave it because I was so ill, but my ex-wife was still drinking. I said: “Look, I can’t see us staying together if you’re drinking when I’m trying to get better.” So she stopped, went to see the doctor and we supported each other.

I was supposed to have an appointment in March 2020 but couldn’t due to Covid, so was told to keep taking the medication and they would keep in touch with me over the phone. In May my mother was diagnosed with stomach and liver cancer. She wanted to be with us and even though I was quite ill I spent the next eight weeks or so looking after her until she passed away, aged just 64. Because I was concentrating so much on looking after her, I didn’t realise how ill I was myself. In the October/November of that year I got a stomach infection and spent nine days in hospital.

Being told I needed a liver transplant was a massive shock. I'd been thinking I would get better and everything would be ok

My consultant referred me to the Queen Elizabeth in Birmingham and when I met the team there they said I needed a transplant. That was a massive shock – I’d been thinking I would get better and everything would be ok. I now worked to get my strength up – I’d wake up really early and try to walk at least 10,000 steps a day. Because I was doing so well they put me on the transplant list, but then my legs and feet started swelling and I felt very tired. I was sleeping during the day and awake at night. In the morning I’d get up and deal with the chickens – but would be so tired that I’d go back to bed. I’d then get up again, have something small to eat and that would tire me out, so would go back to bed.

When I went back to Queen Elizabeth six weeks later they said I was too weak and took me off the list. I was very upset and thought I was going to be left to die, but they gave me medication for the swelling and said they wanted to see me over a period of 18 weeks and to see improvements every six weeks. So I really concentrated on my diet and exercise and was put back on the transplant list in June 2021. One doctor didn’t recognize me because I’d improved so much!

On September 17th I got the phone call, met the liver coordinator and signed the papers. The next thing I knew I was being given an anaesthetic and woke up a couple of days later. Because of Covid there was nobody there and I felt nervous and scared. As well as rejection issues, I also had hallucinations and strange feelings – I don’t know if that was the drugs. I remember watching people on my ward going home after several days. I was still there after 21 days.

When I was finally discharged I had to go back the next day for an appointment where they said they shouldn’t have let me home and I was kept in again. There were still a few rejection issues and I was put on different medication. At that point my now ex-wife called to say she wouldn’t be there when I got home. Too much had gone on, she said, and she couldn’t cope any longer so was leaving. I’d had no idea this was coming. We haven’t seen each other since.

I wasn’t discharged until 30th October when my father and friends came to pick me up. In the final few weeks there I was finalizing a barbecue calendar I put together to raise money for the British Liver Trust which was a nice distraction and it raised over £300! My father said he would support me while I concentrated on getting myself well which was the most important thing for me. In some ways the liver transplant outweighed the breakup of my marriage!

My old liver had a cancerous tumour so I was put on chemotherapy, but I was allergic to the tablets

My old liver was found to have a cancerous tumour after they took it out, so I was put on chemotherapy tablets on Boxing Day 2020. However, I had an allergic reaction and spent four days in Queen Elizabeth Hospital in the new year. I was incredibly itchy and literally tearing my skin off. They said I didn’t have cancer, but cancerous cells so I could either “run the gauntlet” or carry on with the chemotherapy I was allergic to. I chose not to have the chemotherapy. Now every time I have an appointment at the hospital I have to pop over to the oncology department for scans. So far so good, there are no cancerous cells.

In January I began to feel like me again and went back to work in March. I applied for five jobs, had five interviews, where I told every single employer the truth about me, then got five job offers. I had a hernia operation on August 12th, 2023 – it happens to some transplant patients and you’re normally in hospital between three-five days, but I was in for two weeks because I had an infection, among other issues. I also had an endoscopy and was told my pancreas and bowel are full at different times so they need to keep an eye on that.

Other than that I feel wonderful and am looking after myself. I enjoy life, live as best as I can and must be the only bloke who doesn’t moan about Mondays – it’s a day of my life and it’s great. After the divorce I bought myself a new house and moved out into the country. My father is still very supportive and I met Michelle at work and she’s wonderful too. I think about the gentleman whose liver I’ve got and his family an awful lot – I’ve written them a letter to show my appreciation.

Going through something like this shows you who your true friends are and the people who I thought were fantastic friends really are. Now they come over for a cup of tea rather than a beer!  They’ve asked me how I’ve got through all of this and I say I’ve only done what everyone else would have. I haven’t done anything extraordinary. It’s been hard work and a challenge but I am here, I survived and am proud of how far I’ve come.

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