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.

The post Michelle’s story: “I contacted the British Liver Trust’s Nurse Helpline because I didn’t understand a lot of the medical terms the hospital used” appeared first on British Liver Trust.

When you are an alcoholic you don’t think about how much you drink, it’s like a drug and you have to get as much of it as you can. For me, drinking was all part of a social lifestyle – we would all go the pub after work and playing sports, but towards the end I was drinking 10-12 cans a day. Alcohol made me a different person and I’ve only got myself to blame. I wasn’t very nice and didn’t have a proper care for anyone, including my family.

My stomach started swelling in the summer of 2022 and my GP said it was likely to do with my liver. He put me on water retention tablets which helped and sent me for an ultrasound of my liver which showed cirrhosis and I was told I would have blood tests every three months.

Ascites drainage

At Christmas 2023 my children gave me a box of non-alcohol beer and I knew I was drinking too much, so on 2^nd January 2024 I decided to stop. It made me nasty at first, but I got through it.

In June that year I had a blood test in the morning and at teatime the hospital called saying I needed to come back with a bag because I was staying. I walked in and left in a wheelchair three weeks later. I nearly died. Because my stomach was massive I had two drains for the ascites and they took 12 litres the first time. The hospital was good, but it’s not a liver hospital so they had to keep phoning Leeds and putting me on different drugs.

After I was discharged I had to go back for a blood test every week and a drain every month. The drains were done by junior doctors and they put me through that much pain. They took six hours and sometimes I would go in at 9am and they’d only start draining me at 3.30pm and by the time they’d finished and checked me over, I’d be going home at 11pm. I was transferred to Leeds hospital in September and because they have a special liver unit their drains only took and an hour-and-a-half and I didn’t feel a thing.

My liver will never repair itself because I have end-stage cirrhosis

I had a full day of tests at my first appointment in Leeds and they put me on the liver transplant list at first, but after a period of time they took me off that. I had the TIPs operation, which didn’t hurt and I was only in hospital for three days. It’s also caused me to have an umbilical hernia repair.

My consultant’s main concern was the ascites and that has now gone away, thanks to the TIPs procedure and I will have a scan every six months. However, my liver will never repair itself because I have end-stage cirrhosis and I will need a liver transplant in eight to ten years’ time due to the extent of the damage.

‘One won’t hurt’

My legs and my golfing arm are a bit stiff as I haven’t used them in a long time, but the exercises they gave me using a spring that I compress has helped.  Other than that, I feel like a million dollars.

I consider myself a recovering alcoholic now. I haven’t had a drink since the day I stopped and will never touch it again. It would be very unfair to my family and the people who looked after me if I started again. Sometimes people will try to buy me a drink, saying “One won’t hurt” but my friends will either jump in and stop them or I give it to someone else. I only drink soda water now.

If you drink too much you have to accept that you’re an alcoholic to get better and to give up alcohol you have to want to do it for yourself.

The post Neil’s story: “I consider myself a recovering alcoholic and will never touch alcohol again” appeared first on British Liver Trust.

I have lived with depression ever since I can remember and really struggled through childhood and my teen years. It just happened that I stumbled upon alcohol when I was 15, before any kind of therapy or medical intervention. It gave me the lift out of the mire that I craved, and it was instant. Alcohol was my best friend.

I rarely took a break from it for the following 30 years and it was mainly heavy binge drinking at any opportunity, for any reason. Although it gave me that lift, it also changed my character and behaviour significantly. Yes, I was more confident, but I had a temper and my mood would swing at the drop of a hat. Over the years GPs would talk to me about me cutting down or abstaining, but I wasn’t convinced it was a problem and didn’t feel like an alcoholic.

I lost jobs, friends and fell out with family. I had financial woes. I didn’t know anything about making a home or settling down, I would sofa surf, move around, be a bit of a rolling stone. I just couldn’t manage real life stuff, I felt I had no choice, it was all about not being that depressed child.

The most stable part of my life was between 2009-2019. I met the love of my life and had a good set of friends, but I couldn’t curb the daily after-work drinking habit. It got really tiring for those around me, but I would defend my right to a beer. It was more than that though, I was hiding in plain sight, not declaring my addiction or wanting to believe it was one. Eventually my relationship broke down, my life’s biggest regret.

Blood tests

My last three or four years of my drinking were isolated. After work I would get home and drink significant amounts of alcohol. I eventually couldn’t carry on at work anymore, so I left. From 2014 onwards I avoided going for a blood test – I just didn’t want to know what the results might be because I had been given mild warnings from the GP for a good 10 years prior to that about my liver enzymes etc.  Basically, I buried my head in the sand.

In November 2022 I ended up in hospital for a week to detox. I thought I was cured, this is it, new start, onwards and upwards. I only managed a few weeks, then I thought because I’ve done so well so I will get a bottle of whiskey as a pre-Christmas treat. It can’t do any harm.

Well, it did. It triggered off my underlying addiction to alcohol. It got so bad I was up to three litres of vodka, 20 cans of strong cider and a bottle of wine every single day. I stopped eating completely, stopped looking after myself and gave up on life.

Even though I thought I was a lost cause, the guys from the local alcohol service didn’t. In March 2023 they came around, looked at the situation and took some bloods with a plan for a home detox. A day or two later they were back, the home detox was not suitable because my bloods were too dangerous, so I had to go into hospital that evening.

I had all of the symptoms – jaundice, ascites, sarcopenia, vomiting and excreting blood, skin issues and so on, and we didn’t know if I would make it.

The first week or so in hospital I was experiencing psychosis which was distressing. When I came round and was compos mentis I was told I was in liver failure and very poorly. I had all of the symptoms – jaundice, ascites, sarcopenia, vomiting and excreting blood, skin issues and so on, and we didn’t know if I would make it.

I had an ascites drain which took litre after litre of abdominal fluid, after that I got SPB (spontaneous bacterial peritonitis), and sepsis. I was probably in a single digit percentile for survival at that point.

I spent approximately two months in hospital, had a Child-Pugh score of 11 (severe), FibroScan was 75kpa (highest it goes) and was diagnosed with decompensated end-stage liver disease (cirrhosis).

When I went home to recover, there seemed to be a huge void of not knowing what would happen. I was told ‘we will know more in six months at your review’. That naturally took me to the internet which can be a frightening place to research a diagnosis, with a lot of contradictory information.

I became aware of the British Liver Trust in hospital and was given leaflets with helpful information and resources etc.  Then I checked it out online and on socials to understand the jargon and read people’s stories. Knowing there is a vast community out there with similar stories is a great comfort, and the information available is easy to understand on the BLT website.  It made me believe I could begin to recover and reclaim my life.

Learning to cope

By joining an online liver disease community I quickly became more at ease and made some great friends. It helped me learn to cope, and speaking to others who had been living with the same diagnosis for many years was a great comfort.

On discharge I had been prescribed Rifaximin, Lactulose, Spironolactone, Carvedilol, Co-Trimoxazole, Cyclizine, Omeprazole, Folic Acid, multivitamins and Fortisips. However, one-by-one and review-after-review my medications were whittled down, my imaging showed positive changes and my bloods were consistently in range. My liver is compensated again and my Child- Pugh score has gone down to 5 (mild) and now I am completely med free. I have a six-monthly ultrasound and bloods for monitoring purposes and am currently taking part in an HCC study which aims to improve surveillance methods, early detection and diagnosis of liver cancer in people with cirrhosis. I can hopefully live out a full life without transplant. A life of living.

Eventually I also got talking again with my former partner and we’re now close friends. She and my friends have helped me more than they know through my sobriety and recovery and I owe them the world.  I just wish things had worked out differently. I’m especially grateful to my mum, for without her love and rock solid support I don’t think I would have survived. Going forward I would really like to work in the addiction and recovery field and leverage my lived experience into something positive and be an advocate for people with ARLD.

If my story sounds familiar to yours – acknowledge that you have a problem. Don’t bury your head in the sand as long as I did.  Be proactive in your health and get those bloods done.  Seek help and self-refer or ask your GP to refer you to your local alcohol and drugs service – people that will listen. And request a FibroScan and ultrasound.

In sobriety, take your time with recovery, one day at a time, do not clutter yourself with fancy ideas, hobbies or schedules that are unmanageable in the beginning.  Do simple things – walk, stretch, eat healthily, journal, appreciate nature and look forward to quality time with family and friends.  Clear your mind and your new path and gradually build up your life.  There’s plenty of life left to give.

I’m now 47 and have been sober since 28^th March, 2023, the day I went into hospital. It’s proof we can turn it around from the most dire situations. Connection, not isolation, is the key.

The post David’s story: “Acknowledge that you have a problem with alcohol. Be proactive in your health and seek help” appeared first on British Liver Trust.

When Ben’s father was admitted to hospital with alcohol related liver disease, the family fought to ensure he received the best care possible in a ‘critically ‘underfunded’ NHS. However, when the doctors said there was nothing more they could do, the family did everything they could to ensure their beloved dad’s final days were as comfortable as possible. Thank you for sharing your story, Ben  

My dad first started drinking at weekends when he was younger. He later became a functioning alcoholic for the last 30 years of his life following the death of his dad and best friend in quick succession, meaning drinking went from social to numbing. He and my mum separated when I was 12, but they lived only two minutes away from each other and he was always a great father.

It was only when my brother and I got older that we realised the quantities Dad was drinking and would sporadically raise the issue with him. He recognised it, but didn’t do anything about it and tried to hide it. Dad’s physical health began deteriorating rapidly in 2021 when he was 63 – his balance became a lot worse, there was muscle wastage and the smell of his breath became foul. Because he was a stubborn Northern bloke he’d never admit to being ill, so when he eventually said he felt awful we immediately took him to A&E. Dad was in and out of hospital for the next six months.

While the individual staff were brilliant, the NHS is clearly critically underfunded. Everyone knows it, but until it happens to you or someone close to you, you don’t realise just how bad it is. Dad stopped drinking and did everything the medical staff asked of him, but during his first admission he said to staff that he only drank two bottles of wine a week because he was embarrassed and wanted to go home. It was hard to get hold of medical professionals who knew about my dad to correct that information and even when I did, I wasn’t sure how much it was taken on board.

No liver ward

Dad’s first discharge letter was just two sentences long and he was given two types of tablets. We were appalled that no one checked if he had family or carers and if we hadn’t demanded that someone take him on again, he would have died within weeks. He should have been referred to the appropriate (liver) team immediately, like you would be if you had a heart problem. When that eventually happened they were great, but they needed more help. There was no liver ward, only a tiny office down the corridor for staff which was not always occupied. Both mum and I worked at the hospital so we could knock on people’s doors, but I don’t know how someone would cope if they didn’t know where to go or who to ask, or if they didn’t know how to use the internet. They’d be completely lost.

Now Dad wasn’t drinking, my mum noticed he was getting his old personality back and becoming more jovial even though he was very poorly. However, he was becoming very forgetful and the liver specialist diagnosed him with hepatic encephalopathy almost immediately. Dad was very ill at this point, but we were staying positive and continuing to do whatever we were asked as it was all we could do. However, by January 2022 Dad’s doctor said he was too ill for a transplant and the chances of him surviving were basically zero. Nothing can prepare you for a conversation like that. Everything became a blur and it was now all about doing what we could to extend his life for as long as possible, and enjoying whatever time we had left.

I stopped working, and my mum, brother and I took it in turns to care for him. Because I’d worked in healthcare since I’d left school and my mum had 30 years’ experience as an NHS occupational therapist, we were used to looking after people. However, Dad hated having his closest family do literally everything for him, especially when the itching and HE got really bad and he constantly needed the toilet. We were happy to help him, but the pain on his face from having to ask was hard.

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the hepatic encephalopathy set in, he was bored of almost everything because he felt so crap.

Food became a real challenge. Dad hadn’t like the hospital’s hot food, so they would just Leave sandwiches for him, but he never ate sandwiches before and was not about to start now. By the time we got him home and did our research on what we should be feeding him and aligned that with what he actually wanted to eat, he was weak and bedbound. I found that conversations about what he used to like eating proved really useful. When we chatted about that he said how much he used to like fish, chips and mushy peas. That night we had some and
he probably ate three times more in that meal than he had in the previous two days!

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the HE set in, he was bored of almost everything because he felt so crap. He could just about walk from his hospital bed in the lounge to the front door with someone keeping an eye on him, but it would knacker him out for a day afterwards. When we’d ask him what he wanted to do he’d say ‘nothing’, so we’d try different things and he always enjoyed them. Family would come and visit and we took him to Swanage one day in
his wheelchair. Although this was extremely tiring for Dad he really enjoyed it.

Constant itching 

The district nursing team were brilliant before Dad died, helping to sort out equipment and provided useful tips. It would have been amazing to have their help months before but, sadly, that’s not how it works. Towards the end Dad was delirious, constantly itching and in pain, and was unresponsive in his last couple of days. When Dad died on March 9th 2022, my brother and I walked in from a different room and quickly realised it was happening, we phoned my mum and she came over straight away. We were all together.

Immediately afterwards the family did a whole load of nothing, apart from just being in each other’s presence. After a few months I had counselling. I had been quite sceptical of it, but it was what I needed. Just being able to talk to and cry to somebody other than my family – I would really recommend it. Eventually my emotions stopped occupying every minute, I found the energy to do things again and I returned to the gym and started a master’s degree in nutrition.

Mum only found The British Liver Trust by Googling a while after Dad had been diagnosed, it hadn’t been signposted by the hospital. It was only after he died that we started thinking about sharing our experience to help families in a similar situation. I also volunteered with the Trust’s publications team and a dietician on how to encourage people with cirrhosis to eat and contributed to the Questions To Ask Your Doctor web page. I remember being so blown away by the magnitude of what was happening with Dad that we didn’t take in what the doctors were saying. It’s so easy to be tongue-tied during your appointments and only remember afterwards what you wanted to ask, so hopefully the template can help.

Knowing about the information and support provided by British Liver Trust earlier would have been invaluable and I would recommend that people go straight to their website rather than relying on a busy hospital to provide that. We were in the dark for the first few months and the hospital can only tell you so much before they get the results back.

Ben’s close shave raises more than £2,000 for the British Liver Trust

The post Ben’s story: “Knowing about the information and support provided by British Liver Trust earlier would have been invaluable” appeared first on British Liver Trust.

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.

Coughing up blood

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.

Rejection issues

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 2021. 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.

I did find the recovery from the transplant difficult because I couldn’t be as active as I wanted to be, so I cheered myself up with sweets, chocolates, cakes and pies. I’d always really been drawn to sugar and being on steroids really increased my appetite so my weight kept creeping up until I weighed 19 stone. One of the hospital dieticians suggested that eating more healthily would be better for me so I joined a local slimming group. It’s all about watching what you eat, knowing what’s in processed food, making healthier choices and choosing how you cook things.

It’s easy to slip into unhealthy choices and get a takeaway, but you’ve got to realise what these things are doing to your body. Now I have something healthy for breakfast like porridge, yoghurt and fruit and make sure I have a healthy lunch and dinner too. I also make a lot of my food myself now. Instead of buying a jar of pasta sauce which is packed with sugar, I get a tin of tomatoes and make my own. And rather than getting takeaway curries, I make them at home from scratch using healthier cuts of meat and a lot less fat. I still have a bit of cake at the weekend, but it’s all about making sensible informed choices and I’ve lost six stone as a result.

Feeling wonderful

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 12^th, 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’ve also joined a local group for men who like to walk and talk. We recently did a 6.5km trek around a nearby woodland and I’ll be meeting them again. I work from home, so it’s good to get out of the house and talk to people and get a bit of exercise 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.

The post 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” appeared first on British Liver Trust.

I started off drinking socially, but didn’t realise I was also suffering with PTSD and drank more to mask it. Every day I would drink half-a-litre of gin, then have a couple of pints at the pub. Alcohol numbs things for two or three hours, but the next day is worse and you think the only way back from that is to have another drink.

When the pandemic hit I slipped into drinking earlier and earlier in the day. I used to start at 6pm, then 4pm and that meant drinking from 2pm didn’t feel like such a big jump. Then 2pm became midday and I still didn’t think it was too bad, but it was actually six hours earlier.

I knew what it was doing to me, but I just pushed that to the side until I ended up in hospital with malnutrition. I already had a weakened immune system due to chronic lymphocytic leukaemia and by October 2023 I was feeling very ill with no appetite or energy. When I fell at home and hurt my knee a doctor came and did some blood tests and I got a phone call later that day saying I needed to go to hospital because my kidneys weren’t working.

I went to A&E where they diagnosed the kidney injury and after three or four hours I started to get very hot. I tried to go to the toilet standing up but couldn’t. I was admitted and two or three days later I went a very strange colour, started to hallucinate and couldn’t move my legs.

There’s such a stigma around alcohol so people don’t open up about it, but I told the medical staff that I drink every day – there’s no point lying about it. I was diagnosed with alcohol related liver disease and cirrhosis, and as well as steroids, I was prescribed tablets that stop people who drink from having a seizure. I spent about nine days on a drip, was given thiamin and calcium for my malnutrition and put on a refeeding programme. I kept being told it was worse than they had first thought and if I caught an infection I could go downhill within two hours.

With the help of my wife I sort of got the use of my legs back and told the liver specialist I would stop drinking, it was as simple as that. She replied: “Well, it’s all right saying that within these four walls, but what matters is when you get out”. She put me in touch with AA, but I didn’t use them – I was determined to stop drinking and did it without any help. It’s very hard habit to break though, so I understand why some people can’t.

I might have originally been misdiagnosed with cirrhosis, but I still have regular blood tests and am on the HCC monitoring programme

I was supposed to see my consultant ten weeks after coming out of hospital, but it ended up being ten months because of the state of the NHS. She couldn’t believe the change in me because I was no longer drinking and eating very healthily. She said that if she could have a poster up of me she would, because they see a lot of people going back in all the time. When I had a FibroScan in July 2024 they had to do it twice because there was no scarring on my liver and they couldn’t believe it. They thought I might have originally been misdiagnosed with cirrhosis, but I still have regular blood tests and am on the HCC monitoring programme. I’m waiting for the results of an ultrasound and don’t have varices.

To help with the post-traumatic stress disorder I had 20 weeks of CBT and it was great. The first ten weeks were quite hard and you don’t think it’s going to work, but it does. It’s now more than 400 days since I last had a drink. It wasn’t easy at the beginning, but I think that was more because everyone around me was drinking. Being sober is not boring and the thought of having a hangover now is just terrible.

There’s definitely more to life than alcohol. For some people alcohol is their life, but it’s no kind of life. When you’re trapped in that you think there’s nothing else, but no one drinks a whole bottle of whiskey for the fun. If you recognise why you drink, the chances of stopping are a lot higher.

The post Andrew’s story: “Being sober is not boring and the thought of having a hangover now is just terrible” appeared first on British Liver Trust.

For over 25 years I drank and ate excessively and more recently I was probably averaging around 150 alcohol units per week. Every week I promised myself that a Monday would bring a sober and healthy life but it never really lasted. By September 2023 I weighed over 23 stone and had high blood pressure, stomach issues, gout and bad sleep apnoea. It was miserable.

I was tired and dizzy most days and often had hangovers. I blamed the sleep apnoea so in the summer of 2023 I asked a sleep clinic to analyse my sleep patterns and they requested some blood tests from my GP. I had been told a few times that I had a fatty liver but never really thought about it, so those tests were one of the best things that have ever happened to me. Without them I would have done even more damage to myself.

When the blood tests confirmed that I had weight-related diabetes and likely cirrhosis my heart just dropped. I somehow kept working that day, but kept bursting into tears because my Google research indicated that cirrhosis was a short-term death sentence (I later found out this was not always true of course). However, I kept telling myself that the bloods could be off and to not give up hope.

My main GP was amazing and pushed for an ultrasound and a FibroScan. Another GP misinterpreted the ultrasound results, saying I had a very fatty liver but no cirrhosis. For a while I felt like I’d dodged a bullet, so I wasn’t worried about the FibroScan and looked forward to seeing a gastroenterologist who would explain it all.

 Cirrhosis fears

However my fears began to grow, so I contacted my original GP who said I had a KPA (liver stiffness score) of 34. My legs almost went out from underneath me because I knew that meant cirrhosis. I started asking more questions, but the GP couldn’t help and said I’d have to wait until my gastroenterologist appointment in six months’ time.  I couldn’t live in limbo that long so for the first time in my life I booked a private consultation with a hepatologist. It may be the best money I ever spent. He confirmed cirrhosis but said it didn’t have to be life ending as long as I responded in the right way.

As well as instructing my GP to order a suite of NHS tests for me, including an endoscopy and other blood tests, the hepatologist recommended that I see a specialist dietitian. The dietician gave me proper daily guidelines on protein, carbohydrate, fibre and salt levels and instructions on how to ensure I had enough carbohydrates through the night to ensure my liver didn’t go into starvation mode and start storing fat.

Since the initial GP appointment I had stopped drinking alcohol, started eating healthily to daily calorie limits and would walk two-four miles per day when I could. I began to lose weight and felt better. Going without alcohol was very hard, but I was continually surprised that I could do it as I had never managed more than two weeks before. I believe all this has helped the liver healing process.

Because my emotions were all over the place and I was spiralling into worry I went to see a therapist. She really helped with coping strategies and suggested writing my worries down and weighing up how likely those bad things were to happen. I then wrote an encouraging letter to my former self which really showed me how far I’d come. My wife was a brilliant source of support too, I couldn’t have done it without her and my Christian faith has also seen me through the dark times and helped me stay on the right path.

The British Liver Trust’s website, nurse-led helpline and patient stories were a real source of hope for me

I had quickly found that Googling wasn’t a good idea because there’s so much misinformation. Some online forums were helpful to an extent, but there was still misinformation and contentious individual views. The British Liver Trust website was brilliant as it felt like an informed and trusted source of information. I started calling their Nurse Helpline with specific questions and they were always amazingly helpful and so generous with their time.

The patient stories on the website were also a real source of hope for me. There was one in particular I kept returning to: Gordon’s Story. Gordon was of a similar age to me and his initial FibroScan score was similar to mine. He talked about stopping alcohol and around a year later his score was down in the low teens. It’s one thing to be told by a medical professional that these things are achievable, but reading about someone in such a similar situation to me was inspiring. It’s the reason I want to share my story, in the hope that it reaches someone out there.

My blood results are now almost in normal range, just over a year after those first results when my AST and ALT were in triple figures and my GGT was in the hundreds. A FibroScan in the summer of 2024 had a KPA result of 13 and a totally normal liver fat level, the endoscopy was fine too and the most recent ultrasound showed a much improved picture. The last letter I had from my NHS Gastroenterologist stated I do not have cirrhosis now, but fibrosis which is less threatening. My hope is to now reverse that too, by continuing to do what I’ve been doing.

I feel so much better physically and mentally. I’m now well over a year without alcohol and although I might have an occasional food cheat day or two every month or so, I’m eating healthier than I ever have in my life. What surprised me the most is that I’m really enjoying it! I always thought people who said that were just putting on a brave face, but my life is so much better than it was before.

I’m no longer diabetic, my apnoea is less of an issue and I don’t need the stomach and blood pressure medications I’d been on for years. I now go running three or four times a week, hit the weights three times a week and have lost almost nine stone. I’m fitter now than I’ve been in 25 years.

Nurse-led helpline

I’d urge anyone in a similar position to where I was to try not to spiral. And don’t randomly Google – there is so much misinformation and outdated guidance out there. I now only use very select and trusted sources of info like the British Liver Trust. And I’d recommend the Trust’s nurse helpline – speaking to someone in the know really helps.

If your NHS specialist appointment is months away, consider seeing a private hepatologist or gastroenterologist if your means allow. If you drink, then stop. Podcasts and support forums helped me – I tried AA and SMART Recovery, they weren’t for me, but could be for you – just don’t rule out any sources of support. Also get proper advice from a dietitian who knows about liver conditions. Eat healthily and ensure you get the macronutrients you need and exercise, even if it’s just walking in the early days. As weight goes off and/or you gain fitness you can think about other types of exercise. The more positive action you take the better you’ll feel, and the better chance you’ll have of turning things around. Do it without delay.

Trusted sources of information can also help you turn it around – the British Liver Trust is really trustworthy and super helpful. Start addressing your worries head on with them in your corner. They’re an amazing organisation for someone who has liver problems.

I no longer have high blood pressure, stomach issues, diabetes, an extremely fatty liver or an alcohol problem and the specialists now say I can live a normal, long and healthy life. My liver still has damage but it’s nowhere near as bad as before. If I can do it, anyone can and you’ll be so glad you did. We all have doubts and hiding from them put me in the situation I was in. Now drag them out into the light and take them head on.

Sharing this experience has made me realise how bad things were for me, but how far I’ve come. Without the positive action I took I’d be in a much worse situation and I hope this story helps anyone in a similar situation realise that fighting back to turn thing around is an option. I hope they get some reassurance and hope from my story in the same way I did from Gordon’s and the other patient stories on the site.

Update: Two years ago I was told I had cirrhosis, so I set myself on a path of engaging with a specialist dietician and getting into exercise. I’ve now lost between 10 and 11 stone in weight, my bloods are perfectly normal and my last KPA was six. My consultant says he’s now ready to discharge me.

There’s been no magic bullet, miracle drug or anything complicated, I just continued to eat healthily, eat enough fibre, proper amounts of protein and carbohydrates and go on a run pretty much five days a week. I’m always buzzing when I come back from a run!

At the start my motivation was not to die early and be there for my wife and children, but since then I’ve also realised how much better life is when you’re healthy. My emotions are more regulated and I feel like a kinder person. I now volunteer every week too.

Before I was diagnosed, I used to like takeaways and frozen foods and my dinner would be something like pizza, followed by five bags of crisps. Healthy food tasted so bland at first, but now I really look forward to my meals and fill up my plate with things like salad, a bit of grilled chicken and some wholemeal bread. While on holiday in America I had a burger but didn’t really enjoy it and wished I’d had something healthy instead. I now only have alcohol on very special occasions such as my 50^th birthday, when I had a couple of beers, but I don’t need it and don’t think much about it.

If I was talking to myself from 10 years ago I would tell them to only trust information from trusted sources, such as your own gastroenterologist, other liver specialists, liver dieticians and the British Liver Trust. After I was diagnosed I read so many articles online which said I was going to die, so I felt so much better after ringing the Trust’s Nurse-led Helpline because I then understood there was a way out.

You can get over this and it’s within your hands to do so.

*Name has been changed as John wishes to remain anonymous

Gordon’s story

The post John’s story: “The British Liver Trust is really trustworthy and super helpful. Start addressing your worries head on with them in your corner.” appeared first on British Liver Trust.

In January 2019 I spotted jaundice in the whites of my eyes. I immediately called my brother, and he met me at my GP practice. Despite the Doctor arranging a blood test the following week, my brother insisted that I had blood tests that day. This was arranged by another doctor a few hours later. He and I knew something was seriously wrong.  I was then admitted to hospital with a diagnosis of alcohol hepatitis which then led quite quickly to fulminant hepatitis with complications of hepato-renal syndrome and hospital acquired pneumonia.

As I was being admitted to the emergency unit I distinctly remember being in the ward toilet while my brother waited in the cubicle in the assessment area. I had six miniature Christmas liqueurs in my bag, a present for my daughter that she didn’t want. I didn’t even like them but knew this would be my last drink of alcohol. Working in the NHS I knew my condition was serious. I stayed in hospital for six weeks and was considered for a transplant at one stage – my family thought I was going to die. I had hepatic encephalopathy (liver-related brain fog, HE) and don’t remember everything that happened, but I know my family were in total distress.

When I was in hospital for six weeks it was my siblings who noticed I had HE – It took days for it to be ‘flagged up’ for more urgent care within the hospital. Thankfully I was eventually picked up by the ‘virtual ward’ clinicians. All care staff need to understand HE – some moments are lucid, and some are totally confusing and feel like you’re in a dream state. Patients should be treated ethically across the whole illness. My pain was not heard at times and I was ignored. It varied wildly from very caring staff on one shift to the complete opposite on the next.

I guess most people with an addiction have a back story, it doesn’t come out of nowhere.

I guess most people with an addiction have a back story, it doesn’t come out of nowhere. In my case I was groomed and eventually sexually abused around the age of nine or ten by an adult male in my extended family. My mother noticed changes in my behaviour and took me for tests at the GP/local hospital but during those appointments (in the mid-1970s) no one asked me how I felt or if anyone had harmed me.

As a teenager I had periods of anxiety, disruptiveness, not concentrating on schoolwork and I rebelled, was often late or played truant. I still never told anyone about the abuse, until my first ‘proper’ relationship, but my boyfriend also didn’t tell anyone else. After that relationship ended, I moved across the country to be a nanny for my brother. I spent a lot of time at festivals and took drugs, even though I didn’t like it. I just wanted to fit in.

I then moved across the country again, to follow a relationship with a much older man. After that ended, I entered back-to-back relationships that were destructive and coercive. One was an extremely violent relationship and resulted in numerous trips to casualty over four years. In 1987 I was walking home alone after an argument with my partner and was raped by a stranger; the perpetrator was never found.

I started a family in the early nineties and was finally in a safe and loving relationship. I had two children. I started my own business, and life was going well. Unfortunately, after 10 years the business was affected by pedestrianisation of the street so I ended up filing for bankruptcy.

When I lost my father and later my mother, I couldn’t deal with my emotions and became distant with my partner, I felt completely alone. I started thinking about the childhood abuse more but still didn’t tell my family. I felt enormous guilt as to what it would do to my family.

In the early 2000’s I started a university nursing course, I felt a great sense of achievement at getting on it, and knowing I would be helping others. In 2004 I finally disclosed to the university counsellor about the abuse and had a six-week course of counselling and was advised that the type of counselling I really needed was long term specialist trauma therapy. Sadly in 2005 my long-term relationship with the father of my children broke down after 16 years. Despite doing everything to save the relationship, I felt nothing, my mind was not there, and we separated.

In 2005 I disclosed the abuse to my GP and was referred for another six weeks of counselling – again I was advised to seek long-term specialist psychotherapy. I started a new relationship but this didn’t last – I was clingy and needed to be valued, and realised I had a fear of abandonment. I then entered a period of severe depression and covered it up from everyone – including close family and my friends at university.

In 2006 I completed my nursing course and for the first time noticed I was drinking beyond the guidelines on any given night out. I managed to not drink on my workdays because I needed to protect my role. In 2007 I started a new, positive, relationship and gave birth to two boys in 2009/10 respectively. Prior to this I realised that I could not perform the physical side of my nursing role and had to stop work in the 4th month of my pregnancy and as a result of the pregnancies I became registered disabled.

I enjoyed the time at home in those early years but then soon after this I became isolated during their toddler years. We also had financial worries. My partner had to work two jobs and we were struggling. I had suicidal ideations, but my partner would dismiss these. In retrospect I don’t think he realised the extent of my mental health issues. In 2012 I managed to get a ‘sit down Nursing role. This really helped my mental health and made me feel valued.

On New Year’s Day 2017 my partner left me for two weeks. I was diagnosed with PTSD and later traits of Emotionally Unstable Personality Disorder (EUPD) and due to a bullying boss, I had to leave my job. I ultimately lost the chance to have specialised therapy.

In May 2017 I finally reported the childhood abuse to the police. My partner left in June, and I continued drinking, and hid it from my family and friends. I left my work and went on long term sickness for over a year.

I struggled during the extended time that the case took to come to court and started drinking much more heavily than ever before. In July 2018 I was admitted to hospital for acute alcohol detoxification for a week. When I was discharged I tried to drink 1% alcohol but steadily I reverted back to 13% strength so by December 2018 I was back to four bottles of wine a day.

Since my hospital admission 5 years ago, I have not had an alcoholic drink.

Since my hospital admission 5 years ago, I have not had an alcoholic drink. One of the main reasons I have abstained is due to putting my family through untold distress that I can never take back. What I can do is make the future brighter with every action I take – or don’t take.  Drinking Nosecco does help me – I know it’s not for everyone – but having a glass of fizz and remembering life before my alcohol problem is helpful.

I find it incredibly frustrating when buying ultra-low or no alcohol products, that they are in the alcohol aisle – no or low-alcohol items should be completely separate. As a society we don’t make it acceptable for people to give up alcohol – many people don’t want to have a soft drink instead of a pint of beer, drawing attention to not drinking alcohol – there should be more places offering no or low-alcohol beer or draught to avoid the stigma.

I find it frustrating that there didn’t seem to be any joined-up thinking from all the separate areas from social workers to health care clinicians and mental health services that I reached out to or became involved with from as early as 2005 and especially when things escalated in 2018 from appointments with mental health practitioners to my first admission to A&E for detox and beyond. There was no support or follow up after this last discharge that had me in the centre except from social services who helped for a while to ensure that my young children where safe and aware that I had a strong wide family network.

My support now comes from my children and family, my eldest son was my carer when I came home. I would never want to put him through that again. I have had support from the British Liver Trust through my brother, he has accessed the charity and knows how to get help from the nurses, when needed.

I want to get across to anyone reading this that you’re not infallible. Everyone has a different personality, life chances and health and we are complex individuals – everyone handles trauma and PTSD differently, but the first step is literally accepting help.

In August 2020 my abuser was sent to prison for what he did all those years ago. The judge’s summing up made me realise I had been groomed and abused in the most wicked way with my family members sometimes just feet away. I had gone through the most enormous amount of trauma, and I probably always will struggle to some degree.

The head of the CPS spoke to me after the case and said it is people like me who encourage other victims to come forward, and be believed, 45 years after the abuse. In July 2023 I received a call to say that my abuser had died after a long illness. I felt shocked at the finality of it all and know the effects of the trauma will carry on in me.

A new beginning

Where am I now? Life is good, but I have to work hard and my feelings of abandonment continue. My partner and I find talking about difficult feelings hard to do to so have recently agreed to start therapy. I have been seeing a fantastic relational therapist, so we will eventually have shared sessions in order to address our relationship and how we move forwards in whatever way it moulds into.

I also use breathing techniques, to get me through stressful times. The 4-7-8 method is especially useful in times of acute stress. You breathe in for four-seconds, hold for seven-seconds and exhale for eight.  It took me a while to get used to it, but I do use it regularly and it’s helpful.

I will be forever grateful to my brother who came to me immediately at the onset of jaundice and beyond. He was a voice for the family being a registered nurse himself and a mental health practitioner. He made the clinicians listen to all of my families concerns.

I am immensely grateful to the two critical care nurses who expedited my transfer to ITU together with the consultants and the registered nurses and health care assistants who did their utmost to care for me when I was admitted in January 2019. I am very grateful to my children and siblings who continue to look out for me and care for me, as I do for them.

I urge anyone who is in any similar situation to reach out to your GP – find one who will give you time. Keep people in your ‘circle’ who are non-judgmental and in your gut, make you feel safe.  Reach out to the nurses at the British Liver Trust, they can help you take the next first step. Be open to accepting the help that is offered.

An end note to make you feel that all is not lost and things however critical can change if addressed. My FibroScan in August 2019 showed clear signs of Cirrhosis in the test results of over 14kPa but on a cellular level from the result of the liver biopsy showed advanced fibrosis. Four years later my newest FibroScan result had reduced to between 7/8 kPa. Not perfect but a vast difference in liver stiffness and all down to abstinence.

The post Ursula’s story: “Since my hospital admission 5 years ago, I have not had an alcoholic drink” appeared first on British Liver Trust.

I’ve had serious eczema since I was 14 and doctors have tried everything. The next option was tablets but they can severely affect your liver if you already have an issue with it. A blood test found a slight issue with mine and my consultant suggested I cut down my drinking by about 25%. I was to have further blood tests a few months later by which time my liver should have improved enough for the tablets.

An average week of drinking for me at my club used to be six pints every Monday and Tuesday, four on a Wednesday and Thursday, then six to eight every Friday, Saturday and Sunday. Others drank at least the same or a lot more, therefore I was not concerned. I thought you would get a warning sign that something was wrong, like a pain, and I never did.

I cut down my drinking by 25%, but everything started to quickly fall apart. I thought I had a stomach infection – I couldn’t eat very much and would be sick if I tried to eat more. I didn’t feel well enough for the second blood test so my consultant put it back a month.

My stomach had started growing very slowly, but I laughed it off, thinking I was putting on weight from drinking beer. Then my ankles became swollen and, again, I didn’t think anything of it, but then the swelling started going up my legs to my knees and then down to my toes and was now causing me serious problems in walking. I have a damaged hip and my mobility was bad anyway. The upper part of my arms were getting thinner and my ribs were showing more. Then I noticed that I could feel the bones more in my nose and cheeks.

Decompensated liver disease 

My sister kept telling me to go to my GP and eventually I rang him. He said he wanted to see me straightaway and when I got there he did a quick assessment then said: “This is more serious than I thought” and was on the phone to the Royal Victoria Infirmary. In hindsight I should have contacted him earlier, but thought it couldn’t be that serious.

I was taken straight to a ward where I had a blood test and X-rays and was hooked up to a drip feed with vitamins. I was asleep most of the time, but would wake up for blood pressure tests every four hours and blood tests every five to six hours. I couldn’t eat in the first day or so but eventually the drip started to make me feel better and they cut the blood tests down to once or twice a day.

My consultant sat down with me and said: “You’re a very lucky lad. If you hadn’t gone to the doctor when you did, and been admitted straight away, you might not still be here now.” This was only 48 hours after I had gone to see my GP which was scary.

He said I had decompensated liver disease and they were keeping me alive by various methods such as the drip. He hoped my liver might start regenerating after all the medication he would give me and then it would be a case of how long everything would continue working afterwards. It could be up to seven years, but it would depend on loads of factors.

He said: “You must be a very excessive drinker”. I replied that, although I drank quite a lot more than advised, I would not classify it as very excessive and had actually cut down by approximately 25%. I explained about the previous blood tests a few months ago and after checking them, he said it was very strange that my liver had become so bad in such a short time. I would have needed to be drinking 24 hours a day for the past few months, but he was more concerned about getting my liver to function as best as possible.

The Freeman Hospital in Newcastle gave me a stomach drain which took eight litres of fluid from my abdomen

After three days I was transferred to the liver ward at Freeman Hospital where they gave me a stomach drain which took eight litres of fluid from my abdomen and they gave me a plasma replacement via drip feed which took almost eight hours. By that stage I was managing three meals a day.

A day or so later the consultant said I thankfully now had compensated liver disease –my liver was regenerating, although it would never be how it was. The swelling had now gone down in my abdomen too but it was still affecting my ankles down to my toes. I was taking water tablets every day, but the consultant said it would be a slow process and I had to keep taking them.

So the panic was slightly over, but my upper arms were thinner than my wrists, you could see my ribs through my chest and all the bones in my face. I was having compact protein drinks three times a day to build up the muscles again – it can take six months to a year if you’re young, but at my age (60) it can take two years, or even longer, and you will never regain it completely. They said I would initially still have to have three protein drinks a day once I got home and after a period of time they could probably be reduced to two per day.

The consultant said there could have been an infection in my liver that caused the damage because stomach infections don’t normally result in liver damage, but there’s no conclusive proof after the event.  I have Alcohol Related Liver Disease (ARLD) regardless of how it happened and he said that if I had only two or three pints a day, I could possibly be dead in a month. Otherwise, I could possibly live up to ten years as long as I continued with a strict diet and prescribed medication. I will also always have quite high chance of getting liver cancer which would very likely increase dramatically (possibly 99%) if I had even just a few drinks. I was offered therapy for drinking, but I was confident I could do it myself and I have actually managed to do so 10 months later.

A dietician went through with me what I used to eat before I went into hospital and gave me a booklet that talked about reducing salt intake, no greasy foods and being careful with sugar. She said I should eat every three-four hours, have a snack between breakfast and lunch, then again between lunch and evening meal and not long before bed. She said I shouldn’t sleep too long overnight because my body would start wasting away again. My sister really helped me by making a list of what I could and couldn’t eat – I’ve stuck by that ever since and gave away food that could harm me.

No advance signs of liver disease

I went back to the club three days after getting home and everyone wanted to know where I’d been. They were very concerned and still regularly ask me how I am. At my request the manager told all the bar staff not to serve me alcohol, even if I asked/pleaded for it. Most of the people I drink with have been very understanding and a couple of them give me lifts to and from the club because I was initially struggling to walk with a damaged hip using a walking stick with reduced strength in my upper arms. I have other health conditions too so can’t walk more than 10-15 metres on my own.

I was initially seeing my consultant every four weeks. After four months it was decided that I did not need a stomach drain anymore but if my abdomen built up again I could ring them. I was then getting a phone call every six weeks from the specialist nurse and still have ad-hoc appointments with my consultant. They always congratulate me because I’m not drinking and wish more people were like me.

If you’re a heavy drinker or drinking more than recommended by the NHS, don’t expect to get symptoms. Most men will probably think “Oh, I’ll be ok” but ask your GP for a blood test (if possible every six months) because that’s the only way you can pick up advance signs that something is happening to your liver. By the time you’re getting swollen legs and a swollen abdomen it’s too late.

The post David’s story: “I thought you would get a warning sign with your liver, but I never did” appeared first on British Liver Trust.

I work in research relating to alcohol so I knew the 150-200 units a week I was drinking was way more than the government limits. A lot of it was to help me deal with work-related anxiety and stress. When the stress was worse, I would drink more – it was like a crutch.

I went to my GP practice about 10 years ago and saw a very young female doctor who I could open up to. She explained the levels I was drinking were problematic, but crucially she told me not to stop drinking immediately because it could be harmful. She put me on vitamin B and thiamine to reduce any potential damage to the brain and told me to come back to discuss the next steps. However, she was a locum and the next time I went back the GP was an older male who was very rude. He said: ‘You’re fat and you drink too much.’ He wasn’t wrong but he made it clear that I was a problem and didn’t offer any solutions, so I didn’t do anything.

I later went through a period of meeting with an alcohol counsellor, but it was quite ineffectual and focussed more on cutting down rather than giving up alcohol. For example, it was suggested that ‘If you drink eight cans of strong cider, try to reduce it to seven.’ I drank wine and it’s hard to measure it like that. I suppose you could do it in terms of bottles, but once you’ve opened a bottle it seems a shame to waste it. Until all the anxiety and stress were dealt with, I didn’t have the mental and emotional space to deal with the alcohol.

Liver damage not addressed

I have a rare chronic condition called sarcoidosis for which I used to take steroids which made me put on weight and my liver function would always come up high. However, I also started getting unexplained abdominal pain they thought could be kidney stones or diverticulitis but didn’t know for sure. My GP referred me to the assessment unit at the local hospital – they did tests but couldn’t find anything. At one point I went to my GP to try to get medication for a separate condition and he said: “You’ve damaged your liver; I’m not giving you anything.” I was so angry at his rudeness, but looking back now, I am more frustrated that he knew I had liver damage but did not try to do anything to address it.

It was only when I was involved in a colleague’s diabetes research project at work that blood test results came back which suggested I really needed to speak to my doctor. This time, I saw a different GP who was really good and re-ran the blood tests, but he told me over the phone that it indicated cirrhosis – a diagnosis he perhaps did not have enough information to give, or have given within a phone call.

I was referred to gastroenterology/hepatology and while my ultrasound results weren’t that bad, a FibroScan came back very high at 38. Because this all happened during COVID-19 and I think the hospital was quite short-staffed I only saw the nurses who did the FibroScan and the people who did the ultrasounds. I was getting letters from people on behalf of consultants, but never saw one. My GP also referred me to the local alcohol service and I went once or twice but I didn’t find them helpful. I was told I had to sign up for their groups, but I’m quite introverted so I didn’t want to. I soon left and never went back but did manage to stop drinking alcohol completely.

My FibroScan score had gone down, presumably because I had given up alcohol completely

For the first year and a half, I wasn’t actually sure of my diagnosis, but eventually, I was told by a nurse during a telephone call: “You don’t have cirrhosis and we don’t think you ever did”. Around the same time, I received a repeat FibroScan and the score had gone down to 14, presumably because I had given up alcohol completely. I finally got to see a clinical nurse specialist in the autumn of 2023 who said I was more stage 2 liver damage than stage 3 and she thinks my liver will still be improving. If it wasn’t for my other health conditions, she would have taken me off the gastroenterology/ hepatology list.

I’m feeling a lot better now. I’m on a different medication for my sarcoidosis and losing weight which is also helpful for the liver. I can’t rule out that sarcoidosis has affected my liver but that hasn’t been explored because my level of alcohol use was almost certainly the cause.

Emotionally I feel fine too, as the work-related stress has mainly gone. I’m now a trade union rep at work to ensure other people don’t go through what I went through with work-related stress and am getting involved with patient engagement groups for liver, alcohol and mental health which I find very interesting. I am in a job where I do have a voice and want to use it – I’m keen that things are done right for people with alcohol-related liver disease. I recently attended an event in the Westminster Parliament organised by the British Liver Trust where I could describe my lived event to MPs and other parliamentarians. Although I found it nerve-racking, I felt it was useful and I was heartened by the number of MPs who attended.

Liver disease stigma kills 

I teach people about alcohol and drugs in my job and that stigma kills. I try to make sure my students don’t use stigmatising language – the words ‘alcoholic’ or ‘alcoholism’ are stigmatising and don’t mean anything in terms of clinical diagnosis. They give you the opportunity to say: ‘I’m not that bad’, like the old joke that the definition of an alcoholic is someone who drinks more than you. You’re damaging your body and other organs because of your alcohol consumption, but these bogeyman phrases almost give you permission to keep drinking as you are not ‘that bad’, for example needing a drink first thing in the morning.

The power of language and stigma is really important – I strongly believe it’s what stops people from getting help. Healthcare professionals need to take liver disease seriously too, not stigmatise patients, be consistent and ensure people get the help they need if they want it.

(Gordon pictured with Paula Barker MP at the Westminster Parliament event)

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