When I was just eight years old I was taken to A&E because I was passing blood in my bowel movements. I was diagnosed with ulcerative colitis and autoimmune hepatitis, and was very lucky not be physically affected by it – except for the hospital visits, I lived my life the same as anyone else. My doctors said I was a quite a rare case and my consultant even did lectures and presentations about me at university. I’m now 30 and it’s still unknown why I have it when no one else in the family does.

Because I was so young when I was diagnosed I didn’t really understand autoimmune hepatitis and because I didn’t have symptoms, I thought I didn’t need my medication. From the age of 12/13 I started taking it as and when and would flush the rest down the toilet. At 16/17 I decided I was mature enough to deal with it on my own and went to hospital appointments without my parents. I also started drinking with friends. How very wrong and naïve I was.

My consultant tried to tell me what would happen if I didn’t take my meds. He took me to the liver ward and walked me round people who were severely poorly, but it didn’t make a difference. I thought it would never happen to me, but then I was diagnosed with cirrhosis of the liver (micronodular) and was placed on heavy steroids and immunosuppression. I didn’t like the feeling of being hungry all the time and the weight gain which the steroids caused, but I did take my meds most of the time as my parents would watch me every morning and started offering rewards, such as presents, for taking them too.

Blunt consultant

When I was transferred to the adult clinic my new consultant was as blunt as possible, saying it was more dangerous for me to take my medication as and when than not at all, so he took my tablets away completely. Eventually it started to click that I should take them, but I don’t think my consultant was comfortable enough to allow me to do that. Plus, I wasn’t getting more scarring on the liver, so my body was maintaining itself.

Fast forward to my mid-20s and I had also accumulated non-alcohol related fatty liver disease, caused by the increased appetite from the steroids. Because I also had irritable bowel syndrome, I was referred to a dietician who placed me on a low Fodmap diet and advised me to go lactose free so we could find out what foods triggered it. Everything had to be cooked from scratch and I lost six stone and after seven years of trying to conceive, I fell pregnant. I gained three stone during the pregnancy, but the good news was that my bloods were within perfect normal range. After I had my son, I lost 1.5 stone, but then my results started to creep back up again.

Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

Just after my son’s first birthday I became pregnant again and had the same weight gain and perfect bloods during the pregnancy, with weight loss after the birth and results creeping back up.

Over the years I have had flare-ups but remain off medications. My sons are now two years old and six months old and my spleen remains enlarged (it went back down after my first pregnancy), my fatty liver remains and my AIH is very much active. Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

I am currently waiting to hear if I will go back on medication for the AIH. I have been very clear I do not want steroids because of the weight gain, but I will take the immunosuppression which takes longer to kick in.

Body in ruins

I find it hard because a lot of people, including my family, don’t know what it’s like for me or what having autoimmune hepatitis really means. Not once as a mature adult have I been asked about any therapy so I can talk about how I feel.

When you’re a child yourself you don’t realise what’s going on but looking back, I do regret a lot of it. My body is in ruins and I’m only 30. If only I had taken my condition seriously when I was younger, I might not be in this situation. Now I have children of my own I’m committed to being better because I want to be around for them. I worry that I may have passed the AIH down to them, but they can’t be tested for it until they’re older.

If you’re diagnosed with liver disease, stay strong and remember it’s about how you treat yourself and your body that impacts your life later down the line.

The post Nadia’s story: “My consultant tried to tell me what would happen if I didn’t take my meds, but I thought it wouldn’t happen to me” appeared first on British Liver Trust.

Liver disease can be there for a long time before it raises its ugly head and Kev and I want to share our story because he wasn’t aware of anything until it was too late.

Kev was diagnosed with type 2 diabetes in 2020, but he was never monitored and liver disease was not mentioned. In July 2023 while on holiday he had three episodes of shivering, rigors and although he said he didn’t feel unwell, I wasn’t happy so we came home early and went to the GP. By now Kev had started to go yellow, his liver was also quite distended and his blood tests were deranged. The GP thought it might be liver cancer and referred us straight to the medical assessment unit (MAU). He was transferred to intensive care where I work for more tests just hours later.

The following day Kev was sitting up and didn’t look ill apart from the fluid building up on his belly and legs and his yellow eyes and skin, but the consultant said he had sepsis and he didn’t know if he would get through it. They treated the sepsis with antibiotics and he was also diagnosed with MASH and cirrhosis, which they put down to his diabetes and previously being overweight. Four days later Kev was moved to the hepatology ward, but he went off his legs because they were very heavy and he became quite weak. He had a couple of ascitic drains and three weeks later he went home, but after three days his belly had grown again and he was struggling to breathe. The GP saw him at home and sent him straight back to MAU.

Kev spent another four days in ICU and was ventilated for 24 hours while they did more CT and MRI, he got sepsis again, was drained a couple of times, then went back to the hepatology ward and was discharged three weeks later. After that he would go in every two to three weeks to have his ascites drained, but didn’t want to eat so had to be NG-fed for a while which he hated.

Intense itching

He was referred to Birmingham for a transplant assessment six months later after a potential issue with his kidneys was resolved. Prior to that Kev was admitted and the doctors said: “We’re not saying no (to the transplant) because we feel we might be able to build him up enough, but we can’t say yes at the moment because he may not get through the surgery.” That’s what we expected and at least we didn’t get a no.

Prior to this assessment in March 2024 Kev started to get a bit muddled and his itching was really intense, so I took him to A&E. He was admitted with HE and was unconscious for a week. The hepatologist said he didn’t know why Kev wasn’t coming out of it and wasn’t sure he was going to. This was the third time I’d been told that he may not survive, but the first time I felt really scared.

On my birthday he did start to wake up a little bit, then he started to come round and came home after two-and-a-bit months. Since then, the only time he’s in hospital is to have his drains done and to look at him you wouldn’t think he’s ill

I now became a bit of a whipping lady trying to build him up with the protein shakes and Kev’s weight started to come back on and he was happy because he didn’t need the NG tube.

Even though everyone was fighting for a yes at the hospital Kev couldn’t have a liver transplant because his heart scan had shown too much calcification

A friend recommended him going out for a meal and eating whatever he could and that it didn’t matter how much he was able to manage. Thank God for that advice as it worked probably because it wasn’t me telling him. I tried more substantial things and if he only ate a quarter of it, that was fine. Otherwise, he would have just kept on having soup.

We kept going back to Birmingham for different tests until in November 2024 the doctors said he would be discussed at the MDT meeting to see if he was ready. A week later we got a phone call a week later saying unfortunately even though everyone was fighting for a yes at the hospital he couldn’t have a transplant because his heart scan had shown too much calcification.

We were obviously very upset but over the months we’ve talked about it a lot and maybe, in a strange way, this is the better option. Apart from his liver Kev’s fit and well so we can enjoy life. If he’d had a transplant he would have needed an extensive recovery and rehabilitation and he’d be on lots of tablets and might not even have made it through the surgery because of complications.

Most recently in October and November he’s just been on a trial to see if permanent drains would be suitable which I can look after and it will be done at home every three days, rather than going into the hospital.

Seeing some positives

We’re both passionate about raising awareness of MASLD because many people are only diagnosed when they have a blood test for an unrelated condition. We need to have more Well Man and Well Woman clinics that do blood tests that include your LFTs because if liver disease is caught early, you’ve got a bigger opportunity to get yourself treated. We need to see more about liver disease on TV too – why aren’t the powers that be advertising it on TV?

Emotionally, it’s been hell on earth and Kev is more emotional than he ever has been. Every time something isn’t right he worries that it’s his liver. When he was first diagnosed, I thought if something happens to him I don’t think I’d want to be here, but I’ve since had counselling and have been on happy pills for a long time. If I wasn’t, it would be a completely different story.

I’ve volunteered with the British Liver Trust, will write to my MP and am spreading the word as far as I can locally too. There is a Liver Lantern support group which is run locally and they have been great. I’ve also met a few lovely people along the way who have been so supportive and I can’t thank them enough. I’ve started painting rocks to promote the Trust and put them in my local area and in the ICU garden. It’s so easy to do and I find it very therapeutic. I also did the 30 for 30 Challenge and managed to raise over £1,000 – I was only aiming for about £250 so I was gobsmacked. My little certificate now sits very proudly on the shelf.

Kev and I have been married for more than 30 years and we try to see some positives in our situation. He’s fit enough to enjoy life and we’re doing things that make us laugh and smile. Two-and-a-half years after diagnosis he’s still here and we’re making sure we’re enjoying life more than we ever have done, going away on little holidays and making memories.

I have also had a tattoo done with the word love and next to it are two butterflies denoting the two years that Kev has survived this awful disease. I can’t wait to have another butterfly added for year three. Even the artist said ‘I’ll see you next year’.

The post Kev and Suzie’s story: “We’re both passionate about raising awareness of MASLD because if liver disease is caught early, you’ve got a bigger opportunity to get yourself treated” appeared first on British Liver Trust.

My daughter Ashley has faced a major health challenge over the past couple of years. A diagnosis of MASLD (fatty liver disease) manifested quickly into end stage liver cirrhosis. In November 2023 we were told that she had only two years to live, devastating news for anybody and for a young mother of only 35, it was unthinkable.  

Over the next six months, Ashley’s health deteriorated rapidly. She put on almost seven stone of fluid, which severely restricted her mobility and then went into kidney failure and was very poorly. Once transferred to the specialist liver unit at Royal Infirmary, things began to progress and after a number of weeks she was placed on the transplant list. After nine months and two false alarms, our prayers were answered and her life saving transplant took place in March this year.  

We are forever grateful to the donor and their family for their precious decision to donate their organs. Their gift has not only allowed Ashley life, it has given her 13-year-old twins their mum back. We hadn’t realised how much of an impact this has had on them and it’s amazing to see them so happy again.  

We jumped at the opportunity to give back in some way

So, when we heard about the LeJog challenge, myself, Ashley, her partner Kevin and best friend Allana decided to take it on. It seemed the perfect way to raise funds for a cause which is very close to our hearts and to raise awareness of MASLD as people just do not realise what a serious condition this is. 

It was also a great way of helping Ashley with her recovery. When we started the challenge, she was just three months post-transplant and looking for a way to keep moving. Doing this meant that she had a reason to get herself up and out exercising every day. It has had such a positive impact on her. For myself, it was a chance to get healthier and move more. I was also diagnosed with fatty liver disease many years ago, watching what my daughter has gone through has given me the push to change my lifestyle and get healthy. The British Liver Trust was also a huge support to my daughter throughout her journey with end stage liver disease, so we jumped at the opportunity to give back in some way. 

It became a part of my routine

We were very proud to complete the challenge in two and a half months. Our preferred method of travel was walking but there was some cycling and dancing involved as well! In the early days, the biggest hurdle in the beginning was trying to fit it in around my busy work schedule. However, it got easier, and it became a normal part of my routine. Understandably, Ashley struggled physically at the start but over time she was pushing further than she thought she could. It was an enjoyable challenge and a great motivation to move more.  

We are extremely overwhelmed by the generosity of everyone that has donated. We could not have asked for a better outcome. We set a target at the beginning of £500 so to raise over £2,000 is brilliant. We could not be happier to raise these funds for such a worthy cause!  

We’ll give the final word to Ashley: “This challenge has been an amazing experience and one that I plan to continue in my daily routine. I do hope my story spreads awareness of this harrowing disease and encourages people not to give up.”  

The post Donna’s story: “We could not have asked for a better outcome” appeared first on British Liver Trust.

I still can’t believe my dad’s not here, he loved life and was so healthy. He had a really strong relationship with me and my sister Sara and was our best friend and safe place. As long as he was on this Earth, I knew I would be OK because he was always there to protect us.

Dad was failed by the system – he had 22 liver function tests over 11 years and they all came back abnormal, but he was always very blasé about fatty liver disease because that’s how medical professionals portrayed it to him. Liver disease is a silent killer and by the time Dad’s symptoms started showing, it was end-stage. If those professionals were educated more, it could have been picked up sooner.

When Sara and I found out that the British Liver Trust was holding a Love Your Liver roadshow in our town we both went. Dad’s former liver nurse was volunteering there and she did my FibroScan. Because of my healthy weight and lifestyle I felt daunted and scared when I got my score of 8.2. Although it’s borderline, because of what happened to my Dad I knew where it could go. The nurse said fatty liver disease could be genetic in my family, so I needed to be scanned again.

When I went to my GP they could see my concern and did loads of tests. They were all fine, but I was still referred to the hospital gastro unit. In contrast, Sara’s GP didn’t test as much, so she would go back to her surgery and say: “My sister’s been tested for this…” I feel that Dad was a bit too much of a gentleman to ask his doctors too many questions and his experience has opened our eyes and made us push for answers more.

You’ve got to look after yourself so you can be with your loved ones for as long as possible.

I reduced sugary and fatty foods in my diet and was already working out twice a week and have now also started Couch to 5k, so I do something four days a week, as well as walking my Labrador every day. You’ve got to look after yourself so you can be with your loved ones for as long as possible.

When I was scanned again at the gastro unit my score had gone down to 5.2/5.5 and I was told to keep doing what I was doing. Even though I’m now out of danger I asked if they would still be looking after me because of the family history and they said I would be scanned again in 18 months’ time. I do think I’m on the radar now because of what happened to Dad.

I was so relieved with my new score and when I got back in the car a song came on the radio that we played at Dad’s funeral and I thought: “He’s with me!”

My children were quite alarmed by my first FibroScan score because that’s what Granddad died of, but I told them I would be fine because I was being looked after. It is scary though, because Sara and I don’t know if fatty liver disease will be passed onto our children and that’s why we shared our story because we want to raise awareness.

We cope with losing Dad by taking each day as it comes, looking after our health and voicing our opinions. He would want us to get on with our lives and be there for our children – they are what keep us going. Even though he’s no longer with us, I feel he is still protecting us because otherwise we would never have gone to the Love Your Liver roadshow.

Read more: Sara’s story

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

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

The post Steph’s story: “My children were alarmed by my FibroScan score because Granddad died from MASLD, but I told them I would be fine” 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.

I had been overweight since my twins were born in 1988 and, like so many mums, I spent my time looking after my children and juggling a busy home life with work. There was little time left for me. My weight had crept up over the years and despite trying various diets and slimming clubs, I struggled to find a way to manage it. I was completely unaware that being overweight could lead to cirrhosis of the liver.

By 2008 I weighed around 18 stone, was feeling extremely tired and had a thirst I couldn’t quench. My GP ordered blood tests and said the results looked normal. It was only when I went back to the doctor in 2011 that I was diagnosed with type 2 diabetes. By now the symptoms had become very noticeable – I was thirsty all the time and felt I could have laid down on the floor and gone to sleep at any point of the day. It seems I had mistakenly been given an incorrect diagnosis three years earlier. The diabetes was managed by medication, but at no point did anyone ever talk to me about my risks of liver disease.

It was only in 2021 when I was having some routine blood tests for my diabetes that my liver enzymes showed signs of concern. I was referred to a gastroenterologist who asked for an ultrasound and FibroScan and, in a consultation on my 58^th birthday, he said he was concerned about the level of stiffness of my liver. I was gobsmacked to learn that my FibroScan reading was 24 , F4 and I had cirrhosis of the liver. I thought cirrhosis only happened to people who drank excessively, whereas I would only have a glass of wine at Christmas or on a special occasion and no more than two drinks at a time.

Cirrhosis shock

The consultant said there was nothing I could do about the cirrhosis and could expect to live for another 12 years – if I was lucky. Even though the prognosis wasn’t favourable, he said I could stabilise it with a drastic change in my lifestyle. I knew I had to take control of my life to prevent the damage to my liver from worsening.

I still found it hugely difficult to lose weight with a job that involved working into the evening most days. While I did manage to lose around a stone, I was struggling to keep it off. However, because of the diabetes, in 2024 I was able to access the Mounjaro (tirzepatide) injection which has really helped with the food cravings and weight loss.

It changed the way I felt about food and enabled me to have a much better focus on weight loss than I have ever achieved before. When I started the injections I weighed around 17 stone 7 pounds. Twelve months later I weighed 10 stone 12 – a loss of 93 pounds. I also try to exercise when I can. It’s difficult with osteoarthritis in my spine, but some days are better than others and my medication does help.

 I found what I needed by accessing the British Liver Trust’s website. Their advice about diet and liver damage was spot on and really did help me in my journey and enabled me to devise a healthy eating plan for myself. Reading other people’s stories was also such a help in motivation.

As a result, I made some big changes to the food I eat, my cooking methods and how I think about food. Instead of just eating something, I stop to ask myself if I really want it, and more often than not, I realise that in the past I would have eaten something out of habit rather than because I really wanted it.

I now follow an alcohol free, organic-based diet. I have cut out all fried food and use an air fryer, very rarely eat processed foods or takeaways, replacing them with ‘fakeaways’ such as healthy kebabs with chicken in a pitta bread with lots of salad. I eat cereals, nuts and berries, choose salmon and salad when I go out and generally substitute unhealthy options for healthier ones. I also make my own additive-free bread and butter and don’t drink at all. I drank so little anyway that I don’t miss it.

Exercise plan 

Because I also have osteoarthritis, not all exercise is easy, but I’ve found an exercise plan that works for me and which I can do in my living room for 30 minutes every other day. It includes some fast-paced walking when I can and marching on the spot and I keep track of my steps every day too. I feel comfortable doing this sort of exercise because it’s at my own pace and I can stop if I need to or if my back starts to become sore. It’s important to find an exercise that suits you and that you can stick to because you’re much more likely to keep it up.

I’ve shocked myself at being able to lose four-and-a-half stone in six months and feel like I’ve got my life back. Three years after my diagnosis and just one day before my birthday I learned that the cirrhosis had been reversed and I had no liver damage whatsoever. I cried with happiness when I found out.

All I wanted to do was stop the liver disease getting worse, I made a lot of small changes and they’ve had a massive impact. I didn’t have any symptoms of liver damage before I was diagnosed and I had no idea I had it. Thanks to the changes I made I no longer need to have twice-yearly ultrasound scans to check for liver cancer and feel so thankful. I also have an enormous sense of relief that I will continue to be here for my family.

I would urge everyone with diabetes to get their liver health checked and educate themselves on the link between diabetes and fatty liver disease.

The post Michelle’s story: “I was completely unaware that being overweight could lead to cirrhosis of the liver” appeared first on British Liver Trust.

For the best part of two years before my diagnosis, I felt unwell but couldn’t put my finger on it. While I didn’t feel it warranted an urgent GP appointment, I felt extremely fatigued, which was very unusual for me, frequently nauseous, and had an aching pain in my upper right abdomen that came and went. The exhaustion led to me withdrawing from my normal life — skipping time with friends, avoiding sitting in my garden on sunny days, and making poor food choices simply because I was too tired to cook. I’d come home from work and head straight to bed. It wasn’t just tiredness. It felt like my body was shutting down.

I noticed my weight started to increase and although I knew I was putting weight on, I simply didn’t have the motivation to do anything about it. It was a vicious cycle that I could clearly see was negatively impacting my health, but physically I couldn’t do anything about. My head was saying, “Belinda, what’s wrong with you, snap out of it,” but no matter how many times I told myself that, I just couldn’t.

Eventually, I saw my GP. My symptoms were attributed to menopause, and I was prescribed HRT. But the HRT caused some vaginal bleeding, which led to a gynaecology referral and an investigation in the form of an ultrasound scan. That’s when fate intervened. A miscommunication meant the sonographer scanned my abdomen instead of performing a transvaginal scan, and she spotted a “fatty liver.” This report went back to my GP who called me in to discuss further. I remember they said, “Your liver looks a bit fatty, but don’t worry because most of the population probably has a fatty liver. We just need to check your cholesterol, blood pressure and I’ll make a referral for a liver scan.” My blood pressure was through the roof, so tablets were prescribed. Cholesterol came back high and so a discussion was had around diet, and I waited for the liver scan. I didn’t know what a liver scan involved, and I wasn’t particularly worried because I’d already been told, “most of the population probably has a fatty liver.” However, in the back of my mind, I thought of my mum who had died at the age of 46, of liver cancer 35 years ago. A few alarm bells started to ring.

I was referred for a FibroScan, which I attended alone, not overly concerned. I expected to be told to lose a bit of weight. Instead, I received a result of 13.3kPa and a CAP score of 400 — placing me at the higher end of S3 steatosis. When I said, “But I don’t drink alcohol,” I learned that liver disease can have many causes. I was told my results warranted an onward referral to a Gastroenterologist and was advised to “take care of myself” and wait for my appointment with the Consultant. Still, it didn’t really sink in until I started to Google!

Thankfully, I found the British Liver Trust website and called their nurse helpline.
Thank goodness I did, because it was thanks to those wonderful nurses (I phoned a few times to be honest!) that I learned more about my diagnosis and what to expect next — what questions to ask the Consultant, what food types to avoid, dietary information, how to manage my fatigue, etc. But more importantly, they helped me put things into perspective and gave me reassurance and hope.

Still, those early days were tough. All I could think of was my children — I thought I was going to die just like my mum did. She only lived three weeks following her diagnosis of liver cancer, and I suppose I was triggered. It was emotionally difficult, trying to stay positive, not focusing on the negatives. I also, weirdly, felt some relief, knowing that all the symptoms I’d been experiencing were now explained and that maybe I could focus on getting better, getting my life back to how it was.

I had a referral to a Consultant Gastroenterologist at my local hospital. I was really looking forward to speaking with the doctor, I couldn’t wait to get some answers and find out how they were going to help care for me. My appointment came quickly, and I took my daughter along with me this time because I knew I’d forget to ask certain questions or maybe not retain important information. I was very disappointed. I was told that there was no “cure” for my liver disease but “there are some new medications that have been approved over in the States, although they’re not likely to be approved over here for about another year or so, so if you’re still around then, I’ll consider prescribing you one.” He even said that the symptoms I was experiencing could be due to “anxiety.” At this point, I thanked him for his time and left the room… furious!

The first thing I did was go on a diet, cutting out all ‘unhealthy’ foods. Having said that, I think I won’t be the only one to say that navigating this is difficult. What can I eat? What can’t I eat? Whilst ensuring you eat enough protein and complex carbs, but at the same time, lose weight and don’t go too long in between meals, eat small but regularly, eat a Mediterranean diet, take a snack to bed, etc. I know my water intake suddenly increased tenfold! A few coffees a day (not too late in the afternoon). I also reduced pain medication that I take for osteoarthritis – I’m conscious of everything that goes into my body. I’ve never consumed alcohol so that’s not something that I needed to take into consideration. I’ve tried to be more active, but that’s a slow process as I’m waiting for knee surgery, and so trying to hurry that along so I can get out walking again – I used to love to walk! Slowly but surely, but trust me, I’m trying everything possible to get better. Since June 2024, I’ve lost nearly four stone, lowered my blood pressure and cholesterol, and am starting to feel hopeful again.

I don’t think I particularly look unwell (although, I must admit that due to my fatigue, I’m not always dressed to the nines like I’d normally be – it just takes too much effort these days), so people assume I’m okay, when I’m not. I plan my days more and try to pace myself throughout the working day. I recognise that I can’t rush anymore and need to be more methodical with everyday activities. I tend to say “no” to people more, rather than pushing myself outside of my physical limitations – trying to mask can be hard work! I think I’ve just realised that it’s about self-preservation and I need to prioritise my health before anything else.

The British Liver Trust continues to be a huge source of support. I regularly attend the MASLD online support group meetings – they’ve helped me feel less alone as it’s comforting to speak to other people in similar circumstances. Liver disease can be invisible, isolating, and misunderstood, and stigmatising, but in that space, I feel seen and supported.

I now know the importance of listening to your body. If something doesn’t feel right, don’t ignore it. Listen to your instinct and speak with your GP. Push for answers. If you’re someone who’s just been diagnosed, please don’t panic, phone the British Liver Trust helpline – they are amazing! They were my lifeline in those early, scary days.

Inspired by my own journey, I’ve been working closely with Public Health colleagues and Community Liver Specialist Nurses to raise awareness locally. This has included, helping to organise a liver health event in my local area offering free FibroScans to more than 600 people – potentially saving lives and breaking the stigma.

To anyone just starting their liver health journey: please don’t panic. You are not alone. There is support, and there is hope.

Update: Following the liver health event on January 31st, 2025, I unfortunately fractured my shin in a fall at home. To complicate matters further, just a couple of weeks later, I also underwent emergency breast surgery. While navigating all of this, I feel there were some missed opportunities in my care, which may have been influenced by the complexities of managing liver disease, particularly how my body responded to antibiotics. As a result, this series of events has set me back, further reducing my mobility and introducing additional challenges during my recovery from the breast surgery. Two months later, my wound still requires ongoing dressing and management and still using crutches to aid my mobility. However, despite these challenges, this experience has only strengthened my commitment to raising awareness and advocating for a greater understanding of liver disease in the healthcare system.

The post Belinda’s story: “I regularly attend the MASLD online support group meetings – they’ve helped me feel less alone as it’s comforting to speak to other people in similar circumstances.” 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.

The post Morwenna’s story: “I am most thankful for the British Liver Trust’s support and for raising awareness of liver disease” appeared first on British Liver Trust.

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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