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.

Since I was diagnosed with fatty liver disease, everything I’ve read suggests lots of people have it, but I’d never heard of it and nobody ever mentioned it to me or that I should get my weight under control so that I didn’t get it.

I’ll admit I didn’t always eat very healthily and have been overweight for most of my adult life. I’d started piling on the weight at senior school and when I first left home, I ate a lot of cheap, processed food, ready meals and pies. I was diagnosed as pre-diabetic in 2017, then type 2 diabetic in 2019. My GP sent me on a one-day course which explained what diabetes is (some of it made sense, some of it was a bit beyond me) how much sugar there is in different foods and eating complex carbohydrates. I did make some changes to my lifestyle, but I do like my food and found it hard to cut back.

I was at my heaviest during Covid, just under 23 stone and probably eating a lot of stuff I shouldn’t have been, because it was awful being bored and sat at home. I was already prescribed metformin and following lockdown ending I had tried to watch what I was eating and had lost some weight myself, but my sugars carried on climbing. I was prescribed Trulicity to help control my appetite which helped me more weight but my sugars didn’t improve.

By 2023 I was 19 stone and I went to my GP because I was having stomach problems and generally feeling unwell. They didn’t find anything startling in my blood tests, but I was referred to the gastro department at the hospital. I heard nothing for weeks until eventually I got a phone call, not a face-to-face appointment. The gastro guy ordered a battery of tests, including a colonoscopy which was a three-month wait. I got a letter a few months later saying they’d found a couple of polyps and I had an irritable bowel, but otherwise everything was fine.

FibroScan results 

However, they also asked for an ultrasound and another battery of blood tests, including hepatitis and AIDs tests. I queried that but was told there was nothing to worry about. I had a scan in May 2024 where they injected me with dye and took pictures, but I didn’t understand what for, then in March 2025 I had a FibroScan. A few days later the FibroScan results were added to my NHS app. It said 23.9 and F4 which meant nothing to me, so I Googled them and basically sat and cried – I had advanced cirrhosis. Then I stupidly Googled the prognosis, which scared me even more.

I didn’t understand why this result had just dropped into my app and I’d not had a letter. I kept ringing the gastro unit but was only getting an answer machine. I left messages asking them to please call me as I was really worried. While I waited, I found the British Liver Trust online and learned more about fatty liver disease and that it’s not just alcohol that causes cirrhosis. My diagnosis now made sense.

After a week of waiting for the gastro unit to contact me I finally drove up there. The receptionist said the best she could do was promise someone would call me and they did – eventually. They said a letter had been typed but wasn’t ready to send out and they would try to get it issued as soon as they could. It came a week later and confirmed what I’d already Googled. I had cirrhosis caused by MASLD and should manage my diet and do what exercise I could. Because there was a higher risk of liver cancer, they would scan me again in six months and the liver team would contact me then.

To give someone that bombshell of a diagnosis and say ‘See you in six months’ is disgusting and I complained to the hospital PALS team. The whole process had taken nearly two years, and I hadn’t seen a gastroenterologist face-to-face once to ask about the diagnosis and what it means for me. How can that be right?

I contacted the British Liver Trust’s Nurse-led Helpline. The nurses were really lovely and helpful and encouraged me to pursue my complaint, saying someone should have sat down with me and gone through the specifics of my case. They also directed me to the Trust’s literature so I could read more about MASLD and how keeping healthy, losing weight and keeping my sugars under control would help my liver.

I’m still trying to come to terms with how I’ve ended up where I am. I was in hospital with pneumonia in 2021 and remember one of the doctors saying my liver results were deranged – it stuck in my mind because it’s such a weird thing to say. He said it was probably because I was very poorly and not to worry. Now, looking back, I may already have had a fatty liver and was possibly developing cirrhosis, but there was no follow-up. It just doesn’t seem to be on anyone’s radar.

The pain that liver disease can cause could also explain the pain I was experiencing on my right side which I first noticed in 2023. I’ve also had lymphedema in my lower legs for about ten years – I was told it was idiopathic – was it really or was it because my liver wasn’t functioning very well?

‘Keep going’

In June 2024 my diabetic nurse swapped the Trulicity for Mounjaro. My HbA1c was 96 then and just four months later it was 56 – the last time it had been that low was 2017! I just wish that had been done a few years earlier, so my liver wasn’t as badly affected. I’m now 14 stone 7 pounds (as of July 2025) but still classed as obese – I need to lose 3.5 stone to have a normal BMI. The last time I was 11 stone was when I was aged 12.

The nurse on the Trust’s helpline said: ‘that’s fantastic, keep going, you’re doing so well’,  and my latest tests have shown a slight improvement in my liver, but it’s still not functioning as it should. I’m now trying to exercise more and recently went swimming for the first time in about 10 years because I no longer feel so self-conscious about my size.

If I could go back in time I would have been more forceful with my doctors. I probably sat back and thought ‘oh well, if it’s bad, they’ll do something’. The NHS is so under-resourced that you can very easily slip through the net so I would encourage people to be more proactive, ask questions and query stuff if they’re worried.

I can only wholeheartedly recommend speaking to the British Liver Trust’s nurses and looking at their literature because there’s a lot on there. You’re not on your own, there are people out there who can guide you.

The post Gillian’s story: “I wholeheartedly recommend speaking to the British Liver Trust’s nurses and looking at their literature because there’s a lot on there” 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.

Sara’s father was told that he had a fatty liver in 2014 and only received one scan in 2016. In 2024 he was diagnosed with MASLD and tragically died a few weeks later aged just 62. Now as Sara and her family try to come to terms with their loss, they are calling for robust procedures to be put in place to ensure everyone who needs surveillance of their liver receives it. Thank you for sharing your story, Sara

I know everyone thinks their dad is amazing, but mine really, really was. He was a gentleman in every sense of the word and was so kind, loving and generous. To say we’re shocked, devastated and heartbroken at his death due to MASLD (metabolic dysfunction-associated steatotic liver disease) and HE (hepatic encephalopathy) is an understatement. He was just 62 and had so much to look forward to.

My dad Stephen wasn’t a drinker, but liked a sweet treat every now and then when he was diagnosed with type 2 diabetes in 2000. His diabetes was well managed and he didn’t need much in way of medication due to his healthy lifestyle. Dad especially loved cycling and walking in the Lake District. He did everything right, but it wasn’t enough.

In 2014 blood tests revealed deranged LFTs and in his annual diabetic reviews my dad was told he had an abnormal liver but not to worry about it. He was never referred to anyone and the only scan I can see in his medical notes was in 2016, then nothing.

In April 2023 he was feeling really lethargic which his doctors thought was an iron deficiency and prescribed tablets. He told my sister his blood results had come back fine, adding: ‘Nothing to worry about, love, I have a fatty liver, but I’ve always had a fatty liver’. By September Dad was quite withdrawn, forgetful, slurring his words, and kept going back to bed. The doctors were doing lots of tests and thought it might be something neurological like Parkinson’s Disease, but still weren’t looking at his liver. By December my dad was like a zombie and I thought could it be depression. If only we had known then that they were mild HE episodes.

Decompensated cirrhosis

In January 2024 he went into hospital with a painful hernia and without that I don’t think they would ever have found the MASLD. He was diagnosed with cirrhosis in March and as soon as I heard that word I went onto the British Liver Trust’s website. The doctors said it might be compensated – I asked if they were sure it wasn’t decompensated due to dad’s symptoms. They came back and agreed and my dad was given a 50 per cent mortality within 12 months. We were devastated and in utter shock. Dad was a man of few words and when we asked him how he felt he would just shrug his shoulders. He told his wife he was scared and didn’t want to die, but as far we were concerned he wasn’t going to die, he couldn’t. We would get him better.

By now Dad’s HE episodes were severe, he couldn’t speak, feed or wash himself or go to the toilet on his own and he was fast-tracked to an appointment with a consultant. I had a four-month-old baby at the time and wasn’t getting much sleep, so all I’d do at night was research.  The ‘Questions to ask your consultant’ page on the British Liver Trust website became my Bible.

“You do know you’re dying, don’t you?” the consultant said to my dad when we first saw him in April. I wanted to know what we could do to help and the consultant said at least 10,000 steps a day to get dad fit enough for the transplant assessment. My dad was quite bad at that appointment and didn’t know who I was when he first saw the liver nurse but we were determined. By his next appointment with the consultant four weeks later, he was walking everywhere. The consultant said: “You’re going to do this, aren’t you!” and my dad said yes.

In the weeks following his transplant assessment Dad’s health started to dip and we noticed the HE symptoms creeping back in. We knew it was a race against time for the transplant.

I told the consultant that my dad had had these HE episodes since at least November and he asked if I was from a medical background. I told him I wasn’t, but had done a lot of reading on the British Liver Trust’s website. Dad was given the Lactulose and Rifaximin which did help, but they had to keep dabbling with the doses because it made his diabetes go haywire, so he was also put on insulin to give him a good shot at a transplant. He smashed the transplant assessment on June 12^th and were so proud of him and excited for the future.

They were due to talk about him at the next MDT meeting but then lesions were found on dad’s liver so he needed a scan to rule anything out. He was due to have that in two weeks and by day 13 I was getting worried and rang the hospital dealing with dad’s transplant. They offered an appointment for 7th July which I said wasn’t good enough, so they said 1st July instead. In the weeks following his assessment dad’s health started to dip and we noticed the HE symptoms creeping back in. We knew it was a race against time for the transplant.

On the Monday morning of 1st July we called an ambulance because of how dad was presenting and were worried he could go into a coma. The ambulance drivers were worried dad had had a stroke and we explained his HE made him present in that way but this was much worse than we had ever seen. Dad was taken into hospital and never came home again.  He kept having fits and the consultant was worried they were seizures so they did a CCG. It didn’t show anything in his brain, so they monitored him for 24 hours and again nothing showed up, so it had to be HE. The consultant said he’d never seen it so bad. HE took everything from my dad.

My dad was put in an induced coma for a few days and it took two weeks for him to get out of ICU. There were signs of improvement when he went onto a ward and we got a private physio in to work with him because he couldn’t have a transplant unless he was walking. Dad couldn’t speak at this point, then got an infection and they stopped giving him his meds and he passed away on 31st July. I pleaded with the consultant saying: “He’s dying but give him a chance with a transplant even if he dies while you’re trying”. The consultant explained dad wouldn’t make it through the operation and that he couldn’t do anything further but gave us credit as a family for fighting so hard for him. We couldn’t have asked for better care and support from his liver nurse and consultant. They truly fought for dad.

Liver disease pathway

We never thought Dad would die and are now going through his medical records to try to understand why a man who had something wrong with his liver wasn’t being scanned. There needs to be a robust procedure in place so no one else goes through this because if we’d got that diagnosis a little bit sooner, if he’d just had a few more weeks, he would have got the transplant. And if he had been put under surveillance a few years earlier they would have seen his liver was getting worse and it wouldn’t have got to this point.

Everybody with liver disease should have a pathway otherwise we’ll heading for a liver disease epidemic and the NHS will be inundated. As a family we want to raise as much awareness of fatty liver disease and HE. I don’t understand how there can be leaflets and posters on every condition known to man apart from the liver in GP surgeries when the British Liver Trust has literature that they could print and put up.

The British Liver Trust has an amazing wealth of resources and everyone there is so helpful. We asked for donations to the Trust at Dad’s funeral and I’ve signed up as a volunteer too. People also don’t realise how lucky they are to have the Trust’s Love Your Liver roadshow because we can’t just get scans willy-nilly. They could be walking around as a potential ticking time bombs and a visit to the unit could save their life.

My sister and I went to the roadshow when it was in our town and through a twist of fate, our dad’s liver nurse was doing the scanning. It turns out we both have early-stage fatty liver disease and the nurse wants to see us again in six months. Without Dad it would never have occurred to us to go and we feel even through death he’s still protecting us.

Read more: ‘Widespread preventative measures are woefully inadequate’, says British Liver Trust Chief Executive

Sara goes to Westminster with the British Liver Trust to campaign for change

The post Sara’s story: “We never thought my dad would die from a fatty liver and don’t understand why he wasn’t under surveillance” appeared first on British Liver Trust.

I am an 83-year-old with significant visual difficulties, asthma, type 2 diabetes and thrombocytopenia amongst other things! Even so, I generally I feel fairly healthy because I manage these conditions with understanding about how and why the body works.

I’ve always eaten sensibly, did not drink and enjoyed swimming, walking and skiing. At 38, I was slim and weighed about eight-and-a-half stone but had my gall bladder removed after it was found to be packed with stones. Then in my early forties I was told I had reached a diabetic status, which I wasn’t surprised by because both of my parents had been diabetic. It was managed at first with diet alone, then with metformin.

I retired from teaching in 2001 and continued in relatively good health until 2011 when I was sent for a scan following a routine blood test. The results showed I had a fatty liver, but my doctor told me it wouldn’t be monitored and to not worry because everyone has it. Really? Why not? I wanted to know how I had got it and what could I do about it.

I contacted the British Liver Trust for advice and they sent me leaflets on NAFLD as it was then called. I pored over these then went back to my doctor for more support. He referred me to a lady who helped motivate people to lose weight, but I only weighed nine stone and needed more specific information. Eventually I saw a dietitian who looked closely at my diet and told me to cut back on pastries such as the quiche Lorraine and pork pies that I liked so much and hadn’t really considered. She also advised me to look out for portion sizes and from then on, I tried very hard not to overeat.

In 2019 routine checks again showed I had a fatty liver so I wanted to know what else I should do to help myself and contacted the nurses at the British Liver Trust. They told me to go back to my doctor and say: “Now, look here… you need to be keeping a regular eye on me and my condition”, but when I did this my doctor said “No, no, you’re fine”. I thought surely my fatty liver disease must be happening for a reason!

I was told I wouldn’t be offered a FibroScan, because we don’t have one in this district

Routine checks in 2022 were still showing issues with my liver, but I was told I wouldn’t be offered a FibroScan, because we don’t have one in this district. I wrote to my-then MP Gareth Johnson because it’s something our local health authority should be looking at. He spoke to me to further understand my concerns, then wrote to the Health Minister to elicit support. He also attended the British Liver Trust’s event in Westminster Hall, but then lost his seat in the 2024 General Election.

In 2023 an astute registrar in the haematology department at my local hospital noticed an unusual issue with my bloods and I was fast tracked to St Thomas’s hospital in London. Their tests revealed that I have cirrhosis and a very enlarged liver so I’m very grateful to that registrar because without her action, I would never have known. I have since been referred to a hepatologist with whom I had a very comprehensive discussion and they are now monitoring me and doing what they can.

I am also most thankful for the British Liver Trust’s support and for raising awareness of liver disease because it’s only when people have that knowledge that they can help themselves.

Their nurses are a gem and very helpful. They’re patient, always answer my questions, and guide and shape my understanding of liver health and how to nurture it. Their advice on diet, self-care, getting the best help from our medical advisors and what to be cautious about is absolutely invaluable. They also tell you what your responsibilities are as much as what your rights are which I think is really important.

I’m sharing my story because I want to help raise awareness of liver disease during Love Your Liver month and beyond because we owe to society whatever we can do. I’ve also recently been in contact with my new MP, Laura Trott, who has been very receptive to investing in Liver Health and every time I receive information from the British Liver Trust I will push that forward to her too.

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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.

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When I was younger I played a lot of sport, but I had a big accident playing squash. I tried to continue playing, but kept getting back injuries until a specialist said that if I carried on I would end up in a wheelchair. I then got a job which involved 12-hour days, lots of travelling and often eating late at night, so a poor diet and very little exercise meant that 20 years later I weighed almost 26 stone.

In 2011 a regular blood test showed my liver enzymes were 5% out of range then 10% in 2012. Although I had no other symptoms my GP made a hospital referral, but their blood tests didn’t find anything abnormal. By 2013 they were further out of range and my GP referred me to the hospital again, but their tests revealed nothing. By late 2014 the liver enzymes were 20% out of range and a when third referral to the hospital failed to find anything sinister, my GP demanded a liver biopsy, which was carried out in February 2015.

When I returned to the hospital for the results, I didn’t even see a doctor, only a nurse. She was looking at the computer screen and without even turning to me, she said: “As you know you’ve been diagnosed with terminal liver disease”. I nearly fell off the chair. I told her I hadn’t spoken to a doctor, she then apologised, but said I only had two years left to live and there was nothing they could do. I was just 56 years old.

I’d never heard of NAFLD, as it was called then – I don’t think my GP had either. He kept asking: ‘Are you sure you don’t drink?’ I would only have the occasional beer and definitely less than 10 units a week. I said I wanted a second opinion on my diagnosis and he referred me to a specialist at the Freeman Hospital. It was the best thing I’ve ever done. The consultant confirmed the terminal diagnosis but held out the hope of a life-saving liver transplant provided I lost at least 30kg and got fit enough to survive the operation. He said he would assign people to help me, but it was down to me to do all the work. He referred me to my local gym where my baseline was established at just five minutes exercise on a treadmill, two on a rower and one minute on a bike. I had three sessions a week and just twelve weeks later I was doing two-hour sessions in the gym and added walking and swimming to take me to 10-15 hours exercise a week. A dietician also helped me change to a low-fat, low-salt diet.

Liver initially regenerating 

I lost about 10kg in the first year and 20kg in the second. My liver was regenerating at first, but then it began struggling to process protein, so I was told to switch to carbohydrates. Eight months later carbs became a problem too. I was losing weight rapidly and then a tumour was spotted on my liver. It was now two-and-three-quarter years past the terminal diagnosis and my consultant started talking about a liver transplant.

I sailed through the transplant assessment – I was pedalling so fast that I nearly broke the exercise bike – and was added to the list in March 2018. By now my muscles were starting to deteriorate, so I was advised to eat sugar when I exercised to give me instant energy. I said I didn’t like it, they said that didn’t matter. Because going to the busy gym now put me at risk of infection one of my close friends got me started cycling outside. Being in the countryside with the birds singing was brilliant and I found I could finally switch off my mind. I got some home exercise equipment too and with the cycling I was now exercising three to four hours every day.

My wife Angela and I were assigned a social worker to support me through the process, whether it was a transplant and survivor’s guilt or end-of-life support. Both she and the transplant coordinator were fantastic.

A second tumour was found in July 2018 and I had a full body scan to see if the cancer had gone beyond the liver. If it had, that would have been it. While we waited for the results, my social worker suggested thinking about what kind of funeral I wanted, to make things easier for my family. My wife and I spent an evening doing that, then amazingly just three hours later I got the call saying there was a liver for me. I received the transplant three years and four months after I had been told I had around two years left to live.

Having somebody else’s liver doesn’t bother me, what does bother me that somebody else is dead.

I was only in intensive care for 30 hours and was up the following day. The physio took me for a walk along the corridor and back holding on to a Zimmer frame and an hour later I wanted another go!  The following day I was walking with a stick and by day three nothing. On day five they put an exercise bike in the room and I gratefully accepted the opportunity to try it.

It took me nearly a month to get home though. The performance of the new liver rolled back, and they did lots of tests to see if it was an infection or rejection. It started to improve again two weeks later and they never worked out which one it was. The top part of the wound came open while I was in hospital and it took about three months to sort that out with the help of the district nurse.

Having somebody else’s liver doesn’t bother me, what does bother me that somebody else is dead. They prepare you by saying they were going to die anyway but it didn’t help me. In 30 years of marriage my wife had maybe seen me cry once, after the transplant I was crying every hour on the hour. This whole experience has changed me.

Four months after the transplant we went on holiday and did a lot of walking up and down hill. I was getting increasingly tired, but thought it was because I was no longer on steroids. I didn’t see the specialist until a month later and he told me off for self-diagnosing. My donor had had Cytomegalovirus (CMV), but I hadn’t and in non-match situations the virus can run riot in transplant patients because of the immunosuppressants taken to prevent organ rejection. I’d been given a drug for the first 100 days following transplant which it was hoped would push the disease into dormancy. However once the drug was withdrawn the virus had reactivated itself and by delaying reporting it I had allowed it to get a really big hold. My medical team restarted the drug but alas I has become resistant to the only oral antiviral drug available.

Post liver-transplant support 

So I had intravenous treatment which was a bit like chemotherapy. While it deals with CMV, the collateral damage to the body is significant. I was in hospital for nearly a month and it was one of the few times I actually thought I was going to die. The  medical team reduced my anti-rejection medication dose from 8mg daily to 1.5mg so my immune system could jump in and help, which it did and I have stayed on that lower dose ever since. Since then things have been remarkable. I exercise four to five hours every day and apart from the Tacrolimus (anti-rejection meds)  I’m only on one aspirin a day.

The British Liver Trust does a brilliant job. I joined their online group for post-transplant patients and it’s incredibly useful. You learn so much from the other people there. I thought I’d be lucky to survive five years post-transplant until I heard a member of the group say she was more than 25 years post-transplant – that gave me hope. I now volunteer at Love Your Liver Roadshows if they’re nearby and have manned an information stand four or five times. The more we can get the message out about liver disease, the more it will help with earlier detection.

I joined the Newcastle Adults Transplant Team and took part in the Transplant Games for the first time in 2023, winning a gold medal for archery. More importantly my wife and I did the donor walk together in tribute to my anonymous, life-saving donor. We crossed the finish line hand-in-hand as she’s done throughout this journey. This year I won the silver medal in the Pétanque and have been invited to join the British Team for the World Transplant Games in Dresden in 2025.

I lost 53kg before transplant because lose weight or die is a fairly persuasive argument. I believe there’s always hope and always something you can do to influence the situation. My wife and I are professional holidaymakers now. This year saw me draw my state pension and my wife and I  recently celebrated our ruby wedding – two events that we thought might never happen. I plan to enjoy every extra day I’ve been given. It’s been worth fighting for!

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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.

Graham was diagnosed with non-alcohol related cirrhosis following a routine health check-up. Unfortunately cancer was later discovered in a lesion in his liver and grew to a size that made him ineligible for a transplant. Now Graham is passionate about raising awareness of the impact that salt, fat, sugar and alcohol can have on the liver. Thank you for sharing your story, Graham

I had a routine MOT with my GP in July 2020, which showed an issue with my liver function test. As it would be about five months before I could see someone on the NHS about it, I decided to see a consultant privately. After an MRI and endoscopy he diagnosed me with non-alcohol related cirrhosis. I was prescribed a beta blocker which I’ve stayed on throughout.

The consultant added me to his patient list and from then on, he saw me on the NHS. He talked about diet as a possible cause. I spent most of my working life sitting in a chair and lived on my own after 2001, so I ate a lot processed meals because they are quick to heat up. I don’t know if this was the only cause but I’m sure it played a big part.

I was put on water tablets in early 2022 and everything went well until Christmas that year when my liver got out of its box and the amount of fluid in my abdomen suddenly became extreme. My consultant admitted me to the liver ward at St George’s in Tooting where they drained 17 litres of fluid out of my abdomen over two days. I was in there for quite a while to stabilise my condition and improve my balance.

I was put forward for a transplant at King’s and went for 3 days of tests in mid-March 2022. Having passed these I was put on the list in mid-April 2022. I had only been on it about 20 hours when I got a call saying there was a liver for me. I was prepped for the operating theatre, but then told there was a patient who would die if he didn’t get the liver I was supposed to have. That was a no brainer – I consented to it.

Cancer had grown

I was then called in a further seven times, but each time the donor liver was too fatty (a major and growing problem in the UK). It was annoying to say the least, especially when in February 2024 I got a call from a consultant at King’s saying it was bad news. The cancer which had been found in 2023 in a lesion in my liver had suddenly grown to the extent that I could no longer have a transplant. Chemo and radiotherapy could not be applied as they would likely damage my liver further. I asked about other treatments but was told there weren’t any. So it would be a question of managing the situation.

In March 2024 my consultant told me that in his experience, I had six months left to live, which was a shock, but he said I shouldn’t hold him to that. I asked what was likely to happen and he said there were a range of scenarios, but as none of them are any good I chose not to think about that and live life as best as I could. He suggested I should register with the local hospice so it would be ready if and when I needed it. I was also advised not to drive as the drugs may affect the speed of my reactions. I dealt with both matters and have an assigned hospice nurse and sold my car.(Now that IS a big step!)

I take a host of medicines, the major one is the water tablets. We’ve upped that to the extent that it could do some damage to my kidneys, but at this stage my consultant feels we should tolerate that. The other key medication is an antibiotic for hepatic encephalopathy – without it the brain fog returns very quickly

I’m very philosophical about life, though of course I have dark days, but I believe you get dealt a hand of cards which you play as best you can. Another hand is then dealt and you continue to do the best with it. And so it goes. It’s been more difficult for my family and friends. They were as shocked as I was and didn’t know what to say. I told them not to worry because there is nothing that could be said. I have visited my brother, school friends, people I worked with and a social at my rugby club. All have been fantastically supportive.

I haven’t had any pain – the main remaining issues are swollen legs, under-skin itching and restless legs which wake me up at night. I take a whole host of medicines, the major one is the water tablets – we’ve upped that to the extent that it could do some damage to my kidneys, but at this stage my consultant feels we should tolerate that and it’s had a good effect on my legs. The other key medication antibiotic for brain fog – without it the fog returns very quickly.

Prevention is key

Prevention is the key to reducing cirrhosis in the next generation. This generation is lost. People should cook from scratch and be taught that in school. Action needs to be taken now because diabetes and liver disease are making huge and ever-growing demands on the NHS. Governments have failed to take on the processed food manufacturers.  I believe they need to tell them that 20% tax will be applied if their food goes over a certain amount of salt, fat and sugar content. I also believe a 100% tax should also be phased in on all confectionery as well as alcohol sales outside of licensed premises.

Exercise is also very important and not just for your body. I find I’m in a much better mood if I get out and do something. The weather is nice now, but make sure you also have something to do when winter approaches and spend more time in the house. I thought I was fit so didn’t go to my GP for years. Then this NASH reared its ugly head. So, change your diet and take more exercise. Don’t wait till you end up in hospital because that will often prove to be too late.          

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