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.

There was always a chance that Lisa’s primary biliary cholangitis would recur, but her consultant said they wouldn’t expect to see anything for at least five years. So it was a shock when Lisa’s health began declining rapidly just a year post-transplant and we were told she was likely to need another transplant. Without being too melodramatic, I thought: “Is she going to make it?”

Lisa felt a lot of guilt because the amazing gift she’d been given by her donor and their family was failing for reasons she couldn’t control and we were worried a clinician could decide she was too much of a risk for a second transplant. When we were suddenly told in November 2024 that she would be listed, I thought: “Oh, wow!” but it can sometimes take a number of years to be lucky enough to get another donor, did we have that time? But at 5am on Christmas Day the phone rang and Lisa said: “Oh my god, it’s Kings!” and we were on our way to London.

The surgeons had said there could be more complications with a second transplant because of the scar tissue and the close proximity to the previous one. I’m rarely pessimistic, but there’s always that dark little shadow in your soul that thinks something could go wrong. Lisa and I had to have conversations about what to do if the worst happened twice within a couple of years. It’s pretty brutal.

Pacing around and just waiting while Lisa was operated on was emotionally exhausting. While I was obviously keeping in touch with family I just wanted to be on my own, but Lisa has so many people invested in her story and they all wanted to know how she was getting on. While the level of support was amazing, answering messages left, right and centre was draining.

Strong and positive

As a carer I had thought things would be easier second time around, but it was more of a struggle emotionally because I knew what Lisa was going through and the complications that could arise. However, she is so incredibly strong, positive and proactive even when things go wrong as they often do, so if I was anything but strong too, it would be kind of defeatist.

For the first six or seven weeks after the transplant Lisa had an ongoing infection which prevented her liver from kicking in properly, but then all of a sudden it started working and she’s been very stable for weeks now. However, because she’s been on extremely strong medication for five years, she’s at stage one of acute kidney injury. It’s being monitored and we hope it stays at that stage – otherwise we could be looking at kidney failure and transplantation. Lisa knows there’s a chance of that, but we’ll face that if it comes and with the same strength and stoicism that she has faced everything else.

Lisa has become so knowledgeable about liver conditions and all she’s done since her diagnosis is help others. She’s made so many connections across the world and her blog on what to take to hospital has resulted in people with autism and anxiety messaging her to say how helpful it’s been. It’s cathartic thing for her and helps her feel she’s not just sitting there waiting to see how she is week on week.

Lisa was incredibly jaundiced before the second liver transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing.

There’s still a lot of stigma and we’re grateful to the British Liver Trust for their work in educating people. Lisa was incredibly jaundiced before the second transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing. Most of the time I chose to ignore it but sometimes it got so obvious that I would look them in the eye as if to say: “Come on, think about this!”

Often when I was at work, I would turn myself inside out wondering whether Lisa was experiencing that with no support and towards the latter stages she avoided going out in public altogether because she got so many stares. Out of the whole journey they were probably the most difficult times. Seeing that directed at someone you love is cruel and upsetting, especially when you know what they are going through.

It’s not necessarily because people have made bad choices, they’re just not educated. I’m sure some of the kids who took the photos shared them with their friends and I hope somewhere along the line someone said to them: “My auntie has a disease and that’s why that person is that colour”. Educate yourself rather than judge.

We’re both grateful to the British Liver Trust for everything they do, not just for us but for everybody with different liver conditions and all their varying degrees of negative and positive outcomes. We were therefore humbled when the organisation asked us to become their ambassadors. It’s given us an official way to get the word out about early diagnosis, Love your Liver and connecting more people to the donor register. If you or a loved one are diagnosed with a liver condition, I would always advocate for the British Liver Trust. The information and support on their website is truly remarkable, including the Living With pages, events and publications. We invested heavily in them when we were educating ourselves on Lisa’s condition.  There are also many people like Lisa who give up their time to tell their stories and I think people can find a lot of solace in seeing where they are physically and emotionally afterwards.

Support from family and friends

Because Lisa has been through so much, I decided to nominate her for Lorraine’s Woman of the Year in 2023. While Lisa knew I’d nominated her, she didn’t know she was in the top three, so when we were invited to the studio to meet Lorraine, I told her I’d won a tour of TV studios in a competition. During that ‘tour’ Lisa ended up on the set and was interviewed by Lorraine! It was a bit of a fairy-tale moment and I was blown away when the public voted for Lisa and she won the title.

Even though we have a lot of support from family and friends, it’s still been a difficult year. I also lost my mother and stepfather within seven months of each other, so you think, crikey, what’s next? But you either fold or you fight and Lisa and I always try to stay as positive as we can.

As a carer being present and educating myself on everything Lisa’s having to do, like what drugs she’s on, what levels they are is very important. It would be very easy for me to let her deal with it all, but being there for her has also helped me. We’re in a great place now and long may that continue. Lisa will be gradually phasing back into her job which she absolutely loves – and we’ll just keep plugging away.

Women are totally the stronger sex, I’ve no doubt that that’s the case and Lisa’s extremely strong. That’s why I’m able to cope so well.

Read Lisa’s story

The post Justin’s story: “As a carer I had thought things would be easier with a second transplant, but it was more of a struggle emotionally” appeared first on British Liver Trust.

I was diagnosed with primary biliary cholangitis in March 2020 and had a liver transplant in October 2021. The first year after my transplant was really positive. While I had the usual hurdles such as my kidneys getting a bit of a knocking from the immunosuppressant drugs and the new liver taking a while to settle, generally everything looked good.

However, a liver transplant isn’t a cure for PBC and my liver was never the problem. My immune system saw the bile ducts within it as foreign and attacked them, causing them to close which, in turn, stopped my liver functioning. So my damaged liver was removed and, thanks to my donor, a good liver was put in place but unfortunately I still had the same immune system.

My medical team said they would do their best to stop the PBC from recurring, but it was always a possibility because of its severity the first time around. They said it was unlikely to recur, but if it did, it would be years down the line and you can’t worry about something that won’t necessarily happen.

However, my liver bloods started declining a year after my first transplant, the pain and itching increased and I kept having closures in the bile ducts and repeated stents placed. The transplant unit at Kings and my local hospital were working together on my care and they prescribed additional steroids. A biopsy then showed I had DSA+ (donor specific antibodies) and also that the PBC had returned. It seems my immune system is really feisty and creating antibodies to attack the liver tissue, while the PBC was going for the bile ducts in the liver and closing them down.

Public reaction to jaundice

I was prescribed another immunosuppressant drug and the progress of the PBC was quite slow at first, then it started speeding up. By mid-2024 I was told I would likely need another transplant in two to five years. By October of that year my memory and weight were declining quite rapidly, I was becoming breathless and couldn’t walk too far or too quickly. Jaundice turned me luminous yellow and people were staring. I was laughed at on the train by a couple in their early twenties which made me not want to go out at all.

Very few people are transplanted in the first place and to go through it a second time and be repeatedly told the risks are so much higher was scary, but I was more worried about whether a second transplant would be an option at all. I knew I was going downhill more quickly than before, but would they give up on me because I was too complex? Would they want to waste another organ if the PBC could come back again? It was a relief when they decided to expedite an assessment for transplant in November and I was listed in early December.

I kept working until December 18^th, when I broke up for Christmas leave and had my first call the very next day. Unfortunately, it didn’t go ahead because in a second transplant or a re-do as they call it, the liver has to be gold standard, but someone else got it which was great. Then at 5.05am on Christmas Day I got the second call. There were no ambulances available, so the ambulance service paid for a taxi to get me all the way from Devon to London and in no time at all I was back in surgery.

I’ll continue to raise as much awareness as possible about liver disease and transplants through working alongside the British Liver Trust.

My surgeons and transplant coordinator had earlier warned me that the surgery, my time in ICU and overall recovery would all take longer because my body had already been through that trauma once. That was absolutely true – the pain was also a lot worse and the liver enzymes and liver function also took a lot longer to settle. My kidneys have taken a massive hit due to the Tacrolimus again and are in a steady decline. They’re reluctant to reduce the dose just yet, but may do in the future while increasing another of the immunosuppressants I’m on. I’ve always been unresponsive to ursodeoxycholic acid, the main treatment for PBC, but still take it in case I start responding to it. While I’m not out of the woods, I’m in a much better place than before Christmas.

When you go through a transplant for the first time you feel very vulnerable, wrap yourself in cotton wool and worry that you’ll burst open at the seams and the new liver will fall out. Because I now know that’s not the case, the second time round I’ve become mobile more quickly and plan to return to work mid year, if possible. I’ll also continue to raise as much awareness as possible about liver disease and transplants through working alongside the British Liver Trust.

I want everyone to know about the Trust’s support groups because they were super-important to me. The pre and post-transplant groups are brilliant, it’s good to hear other patients talk and you feel such elation when someone has been off screen for three or four months and then suddenly they come back and they’ve been transplanted! It’s not just a really positive place for patients, but carers too. Liver disease can be a lot harder, in a different way for our loved ones – even though we’re not in control, they are a level out again and it is troublesome to be in and out of hospital, but our loved ones feel it all as well, its so taxing on them. It must be petrifying, especially if they have to go through a second transplant, because they know what’s coming. The Trust’s patient stories are really useful too.

No shame in liver disease

There are so many assumptions around liver disease, but it doesn’t matter why you have it, nobody should feel ostracised or guilty because of it. I knew PBC was an autoimmune condition, but I still felt a bit of shame when I was diagnosed and wondered if it was somehow my fault. I knew other people would be feeling the same way but couldn’t find anyone on social media with liver disease of my age, so I decided to share my journey online. I wanted to help us all feel less alone and know that however people’s liver disease comes about, there’s no shame in it. I also wanted to educate the public about liver disease generally. I was itching for a good 18 months before I went to the doctor. Would we have been able to slow the progression down, had I known that itch is a symptom of autoimmune liver disease? I talk about the impact Tacrolimus can have on the kidneys too. A lot of people only find this out after their transplant, when they’ve just had one organ switched out and suddenly another one is declining. I want all these challenges to be less of a shock for transplant patients.

It’s all about support and through this a group of us has formed – we call ourselves the Liver Ladies. We’ve all been through the same thing, have got to know each other online and have been on a weekend away together, with another booked for later 2025. We talked, walked, laughed and cooked together and shared our stories and it was wonderful to all be sat together in person.

I feel that my first donor’s legacy lives on through me and am grateful to both of my donors, so it’s also my mission to ensure people register to be an organ donor and that their loved ones know their wishes, which will in turn save lives. It’s all just built and built until I was very kindly nominated by my husband for Lorraine’s Woman of the Year Award in 2023 and somehow I won it! It was such a shock but also an opportunity to reach another audience outside social media and talk about organ donation and the British Liver Trust.

It was also great to be invited back on Lorraine after my second transplant – we were on for six minutes and of course we talked about the British Liver Trust again!

Lisa’s first transplant story

Read Justin’s story

The post Lisa’s story: “A liver transplant isn’t a cure for PBC and my liver was never the problem” appeared first on British Liver Trust.

In 2017 following a routine blood test I was diagnosed with possible fatty liver disease and further tests showed I had very low platelets and an enlarged spleen. However, after a biopsy in 2020, the diagnosis was revised to autoimmune hepatitis and I was prescribed prednisolone.

For the next few years my blood tests, endoscopies and scans were stable and I felt good, exercised a lot and was only going to clinic every six to eight months. I would occasionally get an infection and go into hospital, but I’d always come out feeling very well. I was assessed for a transplant during one of these infections in 2020, but my doctors decided it wasn’t needed yet.

By March 2024 I tired more easily and walking distances and going upstairs became a problem. Fluid started appearing around my lungs which meant having a chest X-ray and my medication being changed until it cleared. I also started getting occasional bouts of encephalopathy. My first experience on encephalopathy was following an endoscopy. I came home, went to bed and when I woke up I didn’t know who anybody was. It’s such a weird and frightening thing and we didn’t know what was happening at first.

Encephalopathy worsens

I gradually started to recognise when the episodes were coming – they only lasted five or ten minutes and then I was back and would remember every single detail, but I wondered why I couldn’t do anything about it or stop it. By autumn 2024 I was still working and doing all the things I normally did, but was a lot more tired and the encephalopathy was getting worse. I would contact family members and say: “I can’t get hold of mum or dad, you need to take me there” when my parents had died 20 years ago. And every time after the encephalopathy had passed, I would go through the whole mourning process again.

I also started wandering without a clue where I was going. One night it was tipping down with rain and I put my coat on, left the house and walked in my slippers for about five minutes. Eventually I got back to our close, soaking wet, but didn’t know which house I lived in, so I stood around for a bit until I finally remembered. From then on my family locked the doors and hid the keys. They also fitted a camera in the kitchen, got me a watch with GPS tracking and a pin from a dementia charity that is programmed with my husbands phone number in case I ever got lost. It felt intrusive, but it kept me safe. If anyone starts experiencing encephalopathy, I would advise them to tell their team, otherwise it will just get worse and be more frightening.  I took a supplement Lola suggested by my team.  I think it did help a bit.

Because of the encephalopathy I didn’t remember what my doctors were saying so my husband had to be responsible for everything. When my consultant saw my hands were shaking he said I couldn’t drive anymore and two weeks later I was admitted for a liver transplant assessment. I was listed in November 2024 and was so relieved because my illness was affecting everybody’s lives, not just mine.

The donor liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me.

I worked right up till the transplant and my boss Mark, was brilliant, but as things progressed, I started working from home for my own safety. When I went to clinic in March 24, I didn’t know who anyone was, so my doctors put on the priority transplant list. I had my first call a couple of weeks later, but the liver wasn’t suitable. A second call came a couple more weeks after that at 4.20am on April 27^th.

I was asked to be at the hospital for 6.30am and was taken into theatre at 3pm – the liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me. The transplant took seven-and-a-half hours and when I woke up the next day in ICU I remember my husband giving me ice cubes as I had a terrible thirst.  The day after I had to get out of bed – which I absolutely didn’t want to do, and had to sit on the end of the bed, stamp my feet, stand up, sit down… The following day I refused and they left me alone.

The second day I woke up without the wooziness from the anaesthetics I knew my head was better because I knew what was going on and who everyone was. Now I just had to get better physically, but I was surprised at how weak my muscles felt and it was almost like I had to retrain my body to do everything. Walking any distance or going upstairs was hard but I was determined. After I was moved to the high dependency unit I would get up every day and walk with the physios, my son or husband – whoever was there – and was discharged after nine days. I went back to Addenbrooks the following week for a check-up and that went well, then again the following week for another check-up and they left me for two weeks. It’s got a bit longer each time and as of October 2025 I haven’t been to clinic for two months now.

Life-changing operation 

The operation has completely changed my life and I’ve got my strength, energy and brain back. Before the transplant my speech had slowed because I was trying to think what the words were and trying to form them, but since the operation I’ve been talking ten to the dozen.

When I was first diagnosed  in 2017, I was terrified and didn’t know what it was. Then I found the British Liver Trust – the patient information is really informative and I now follow them online because I’m really interested in medical breakthroughs and new medications.

Because of my donor and their family I’ll be here for my son my grandson and my family. It’s really important people understand what a difference organ donation makes – it’s not just to people’s lives, but to their family too. My 86-year-old uncle kept looking at me and saying: “I don’t believe it”.

The post Jackie’s story: “My family locked the doors, hid the keys and fitted a camera to keep me safe” appeared first on British Liver Trust.

In 2008 I was a 45-year-old mum of three, my dad has just passed away, I was doing my nurse training, working hard and feeling really tired. My doctor said it was stress and suggested a blood test.

Because I had no symptoms I left it for a while until one morning at work I felt my blood sugars were low. I had the blood test and the doctor came to find me that night because there was something wrong with my liver and I was admitted immediately.

The doctors didn’t know what it was at first and asked me if I drank or took drugs – I didn’t. They then sent me for a scan which showed my liver had shrunk to the size of my fist, so I was blue-lighted straight to Birmingham for a transplant.

That was the Wednesday night, I was given 72 hours to live and listed super urgently. By Saturday they had a potential liver but said it was too big and they could wait another day, then on Saturday night they got another one and I was transplanted on the Sunday morning.

Hepatic encephalopathy

It all happened so fast, but I couldn’t think straight because I had HE and was very argumentative with the nurses, although I would apologise afterwards because I’m not that sort of person! After the transplant I was in for two weeks and remember having a Chinese nurse who was an angel, but the food was awful. Pre-transplant you’re given everything possible to make sure you’re as healthy as you can be, but the first meal I had post-transplant was fish and chips with cold, rock-hard peas. People were bringing me in food from home.

After I was discharged I had to keep going back every three days and take an overnight bag with me in case I needed to be readmitted. Derby to Birmingham isn’t the best trip to be making when you’ve got a massive scar that’s still healing, but it was during one of these appointments that they discovered I was experiencing rejection. I spent six days in intensive care while they stabilised me and my doctors told me to prepare myself for the worst. Everyone was round my bed and my friends helped me to make a will to ensure my girls benefited from everything I had, but I recovered!

When I first had the liver transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport

Later, I also had a lot of ascites and two hernias, I looked like I was six months pregnant so I was admitted to have a stent put in. My weight had dropped to seven stone at this time, I’m normally ten and the doctor sent me home because I was malnourished and the hospital food was so awful.

When I first had the transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport in the hospital canteen. The people in it had been through the same thing as me, but they looked normal! So as soon as I was fit enough, I got in contact with them and never looked back. I had my first World Games in 2010, representing Great Britain and I’ve taken part in them ever since.

I tried swimming at first but didn’t really like it, then decided on cycling because you could do without joining a club. I went from owning a crappy bike to getting a better one and training more and more.

The first medal I got was a bronze in Sweden, which I didn’t expect to get and the first Gold was in South Africa where I was competing with one of my closest friends. On the first race I stopped at what I thought was the finish line, got off my bike and started walking, but then people were shouting: “You’ve not crossed the line!” so my friend got the medal for that. The following day I decided there was no way she would beat me again and, this time I knew where I had to stop and got my first Gold medal. I’ve won six more since then!

Donor’s family

I’ve written to my donor’s family three time and told them what I’ve been doing, but I’ve never heard back. I’m so grateful to them because they respected my donor’s wishes and I’ve had 17 more years with my family than I otherwise would have done.

I’m sharing my story because people need to talk about organ donation and share their wishes more with their friends and family. There are so many people who want to donate but their families stop it, so it doesn’t happen. When you’re at the World Games you see all the people whose lives have been saved by somebody else and the donor families take part too and they find it so uplifting.

If you’re waiting for a transplant you’ve got to stay positive and don’t feel your life is over because it’s not. Apart from a scar and someone’s liver inside me I live a normal life and so will you.

The post Diana’s story: “Thanks to my donor, I’ve had 17 more years with my family than I otherwise would have done” 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.

My childhood wasn’t easy. My mum left me and my sister when I was two and we were in and out of children’s homes and foster care for five years while my dad fought for custody. We then lived with him and the lady who became my mum and her three children.

As a child there wasn’t much food that I enjoyed and as I was moving from primary to secondary school I started getting tummy pains and developed a big belly. I was only 12 but there were lots of rumours going around that I was pregnant. Doctors prescribed medication for my appetite, but it didn’t help. They couldn’t explain the pain and told my mum and dad I had malnutrition because I was skin and bone and had the big belly. Then I had a blood test and that same evening there was a knock on the door – the GP surgery nurse said my blood had clotted so they needed to redo the test. I later found out it was because they couldn’t believe that they were seeing what looked like an alcoholic’s blood in a 12-year-old.

I was referred to a specialist at Grimsby hospital, who immediately said it was something to do with the liver and I was admitted and diagnosed with autoimmune hepatitis. I wasn’t too bad until my mum had to leave and then I started crying because I didn’t want to stay there with strange people. Also, there was test after test and I hated needles.

I began deteriorating and spent more and more time in hospital. Eventually the doctors referred me to a liver specialist in Sheffield Children’s Hospital, where I had my first liver biopsy. Luckily, I was sedated for this.

Transplant is only hope 

I don’t remember much about the hospital, apart from a girl with leukaemia teaching me how to make perfume out of flower petals. One morning when I woke up her bed was empty. I was told she had gone home but later found out that she had passed during the night.

Not long after this I was transferred to Sheffield’s Royal Hallamshire hospital, which I hated as in my eyes it was full of old men and women. By this time my stomach was extremely large and the doctors found it hard to believe that my skinny body could bear its weight. When I reached the age of 15 they said my only hope was a new liver.

My final transfer was to the Queen Elizabeth in Birmingham where I had more tests and they had to build me up so I was strong enough to get through the operation. Everyone helped, nurses and patients’ families would all bring me in little treats to try to get me to eat. I was supposed to be on a no-salt diet, but eventually they let me eat what I wanted to at least get some food down me.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the operation, but luckily they took the risk.

My transplant co-ordinator was great and made me laugh. He got me a teacher to help with my schoolwork when I was well enough and made sure I had things to keep my mind occupied. I was discharged, but haemorrhaged on my first night at home and ended up back in Grimsby hospital where they gave me blood for a couple of days and then transferred me back to Birmingham.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the liver transplant operation, but luckily they took the risk.

I was now losing the strength to carry on, but luckily my parents were there to support me. They rented a flat near the hospital and there was always someone with me from when I woke in the morning to when I went to sleep at night. Eventually my sisters came too and went to local schools – one sister has learning difficulties and didn’t really understand what was going on. Our neighbours back home were also great, they sent me letters and my favourite spaghetti Bolognese when anyone was visiting. I am so proud of all my family – it must have been difficult with me getting all the attention.

Mealtimes were still a challenge and my dad would get angry when I didn’t eat, but if he hadn’t pushed me, I would never have pulled through. I went into a coma while waiting on the transplant list which scared everyone, although I came out of it a day later, I wasn’t making any sense for several hours.

Eventually a donor was found, but the liver wasn’t suitable. Some more time went by, I’m not sure how much. I was on drips constantly, either feeding me or giving me blood and was getting weaker. Then another donor became available and this time it was suitable. I asked if I could have some soup first (I’m not sure why) but I wasn’t allowed to eat. I hadn’t eaten much that day and just because I wasn’t allowed, I really wanted to.

I was given my pre-meds and could see the worry in my parent’s faces and had to stay brave for them. When the time came for them to wheel me to the operating theatre, my mum and dad came as far as they could, holding my hand. I still managed to keep up my brave face but deep down I was scared stiff not knowing if I was strong enough to pull through and if I would ever see my mum and dad again.

I was only the 22nd person to have a transplant at Birmingham – the operation lasted about nine hours and I woke up in intensive care. As I was on life support, they gave me a pen and paper to communicate with. I didn’t like it when they turned the life support breathing down as it meant I had to breathe on my own and it was really difficult.

Eventually I could breathe on my own and it felt good being able to talk again. I started to eat slowly but the food tasted funny with salt in it.

Liver rejected

I also had to learn how to walk again and go to the toilet. The toilet was the worst thing, I cried each time I tried unsuccessfully as I knew they would need to put the catheter back in. It seemed to take so long to get back on my feet, but eventually they let me go to my mum and dad’s flat for a couple of hours. One day I think I may have done too much – we family were visiting and that night on the ward I had a fit and woke up on drips. After that I had up and down days and when there were more better days the doctors let me move to my mum and dad’s flat, but I had to visit the hospital every day. Once my visits became once a week, we moved back home.

Family and friends put on a welcome home party, to which I was driven in a white Rolls Royce and things started to go really well, I went back to school and at the age of 16 I started a youth training scheme to be a stewardess and travelled round Europe.

Unfortunately, three years later my liver rejected and I was back on the transplant list, but they amended my medication which seemed to work, I was stable again and back off the list. My bloods have always been at a stable stage which has worked well for me, but I don’t think they will ever be perfect.

I am now 55, fit and well, and have had 40 years of living a normal life and two children, although the pregnancies were not easy.

I would like to thank all the doctors, nurses, friends and family who helped give me a life, but most of all the parents who made that difficult decision to donate their young child’s liver. I will never forget the donor, they are always on my mind and the fact that they lost their lives and I will always keep part of them alive with me.

The post Julie’s story: “I was 12 years old with a big belly and there were rumours going round that I was pregnant” appeared first on British Liver Trust.

At uni I played a lot of sport with an active social life, but noticed I needed naps to keep up with my friends. I also had a lot of pain around my ribs, and the only way to lessen it was to sleep it off. I to my GP who ordered an ultrasound and gastroscopy, but not a blood test. Nothing was found, so I just coped and dealt with the symptoms.

After uni, I took a year out, travelling and working in a summer camp. The rib pain got worse particularly after eating fatty foods. I also started throwing up every other day, developed an issue with my bowels and the fatigue was limiting me in what I could do each day.

I went back to my GP in May 2019, and after I listed my symptoms he immediately ordered wide-ranging blood tests which showed my LFTs were raised, and an ultrasound revealed that my liver was a bit funky. I was referred to a hepatologist and diagnosed with PSC and Crohn’s Disease. It took a while to sort out the Crohn’s medication, first steroids then immunosuppressants, and I was going to the toilet three or four times a day with soft stools. However, there was no pain and as there was nothing else medically wrong with me, I wasn’t worried.

By 2020 my diet was very low fat, low fibre and low starch which was annoying and mentally draining, but my partner was really supportive and did whatever was needed to produce a good meal. I gradually started getting more pain from fatty foods now even though I was being so careful.

Urso acid helped a lot

In 2022 I was referred to a consultant at King’s and prescribed 750mg of urso acid daily which helped a lot. My weight had initially gone up due to the steroids but in 2024 it started going down and I was getting more tired. My eyes became yellow in June and by August my skin was too, and I didn’t even have the strength to carry a shopping basket. I emailed my consultant who told me to go to A&E for antibiotics querying a cholangitis infection. I was immediately admitted, the first time ever, staying on the ward for seven days. It was really tough mentally being in hospital, but the staff and my friends kept me going! Luckily I didn’t feel too bad and escaped to the park in the afternoons.

After a couple of weeks tests showed I had blocked bile ducts with diffuse strictures and my liver was cirrhotic – a transplant was the only option. It was a lot to take in because I’d previously been doing so well, but my transplant coordinator was lovely and talked me through it and let me feel feelings. A social worker was offered, I didn’t think I needed it then but I’ve since been in touch because I realised I could do with some help mentally. After a nerve wracking couple of weeks, undergoing all sorts of tests, I was accepted on the list on 10th September 2024. On leaving hospital I moved back with my parents because I was feeling quite weak and couldn’t manage basic daily tasks by myself.

Over the next few months I was in and out of hospital quite a few times, the first time due to a raised temperature. Then I got ascites and was given water tablets to treat it. The next time I had a minor case of Covid and my spleen was enlarged and my gallbladder had filled up so much that it had dropped below my ribs, so you could feel the outline through my skin! An MRI revealed a blocked bile duct, so a stent was put in during an ECRP. That was quite scary because I’ve never been under general anaesthetic before, but it helped and my gall bladder got a lot smaller and moved back up into place and I could go home.

When I was first put on the liver transplant list I was optimistic it would happen soon, but as I’ve been classed as ‘stable’ since December 2024, it’s likely to be a longer wait.

Then one night I woke up with an intense pain in my right side and my parents took me to A&E. It was a cholangitis infection and I was put on a morphine drip. The stent was replaced but I got quite a bad infection afterwards. I saw the word sepsis in the doctor’s report which frightened me, but they managed to get it under control after a day or two and I haven’t been in hospital since. In total, I had been an inpatient for nine weeks over the four-month period, and some of the staff were calling me their VIP!

By this point I’d lost nine kilos, felt very weak and was sleeping a lot. My diet was very restricted and I wasn’t able to eat much anyway because my throat was so dry because of the antibiotics and I’d lost my appetite due to the jaundice. I was referred to a nutritionist, but the main thing that helped was having the stent put in and suddenly starting to want food again felt great. I’d lost lots of muscle mass so I was eating carbs and protein every few hours and gained back 10kg over eight months.

It’s a long slog and I need a lot of help from my family, but each month I have a little more energy and feel less weak. I’m still very ill and can’t work; I rest, read a lot and set myself small, achievable goals, even if that’s just going out for a slice of cake or a short dog walk.

When I was first put on the transplant list I was optimistic it would happen soon, but as I’ve been classed as ‘stable’ since December 2024, it’s likely to be a longer wait. I stare at my phone, waiting and feeling sad and sometimes frustrated that I’ve not got it yet and the longer you wait, the more time you have to overthink things. I’m having talking therapy to process everything and it’s helping me feel less tense, working through all the emotions that the wait list brings. I can’t exercise, but the transplant coordinator recommended walking and I’ve been trying some basic yoga.

Support groups

I did a tour of the liver wards and intensive unit, knowing that I’ll recognise the space when I wake up post-transplant helps. I’ve also been in touch with some transplant recipients and it’s been good to hear about their lives post-transplant. The British Liver Trust’s Pre and Post-transplant and Under-40s support groups are amazing – we sit laughing about jaundice and talking about different remedies such as cold showers. My friends and family are really supportive, and the groups give me a chance to talk to people going through similar situations, rather than balling myself up.

Seeing their daughter in hospital scared my parents a lot. It’s the first time any of their children have been ill, but we are learning the language and life of hospital and severe illness together.

I keep an eye on symptoms without going overboard because that’s not mentally helpful. I check my temperature once a day, try to eat well and do what I can – even if it’s just going out for that slice of cake. I also book things with friends, so I have something to look forward to, and they’re always happy to adjust plans if I need to. I’ve learned to be sensible about what I can achieve and still have a bit of a life, but as an ambitious, active person it’s a struggle.

If you’ve been diagnosed with PSC, go to the British Liver Trust and NHS websites, don’t Google it. Join support groups, ask for help, and ask questions. I’m project managing my health by keeping a record of all the notes from my doctors’ appointments and I go into every appointment with questions to help me understand more and feel a little bit more in control. Don’t be afraid to tell the doctors about anything you spot even if it turns out to be nothing and while you’re waiting for the transplant just live your life as best you can.

The post Katie’s story: “While you’re waiting for the transplant just live your life as best you can” appeared first on British Liver Trust.

I was a happy and healthy young boy until I caught chicken pox, aged five. It caused awful stomach pains and the out-of-hours GP told my parents to take me to A&E immediately. My liver and spleen were enlarged and I was transferred from one hospital to another while they tried to work out what was wrong until eventually my parents were told I had liver cancer. I was due to start chemo, but a final liver biopsy showed that it thankfully wasn’t cancer, but congenital hepatic fibrosis.

Things were then pretty much problem free until my thirties. The scarring of the liver caused high portal pressure and my enlarged spleen was swallowing up my platelets, and the risk of oesophageal varices was more of a concern than the liver condition itself.

In the summer of 2022, I started experiencing occasional slight swelling in my feet. I thought nothing of it until it was around my knees and mentioned it at my liver clinic. I was told it was the start of oedema and was prescribed a low dose of spironolactone. I didn’t realise this was the beginning of end-stage liver disease.

In March 2023 I developed gastroenteritis and contracted campylobacter and spent a week in hospital with severe stomach pains. I was administered morphine, but was unaware of how much it bungs you up and wasn’t given any laxatives or other medication when I was discharged.

Prescribed Rifaximin

Two weeks later, I tried to get up in the morning but completely fell over. My pupils were huge and I didn’t know who my fiancée was, or where or who I was. When the paramedics arrived, I was lying down with my eyes rolling in the back of my head, mumbling nonsense and totally unresponsive. I had also become quite aggressive which was completely out of character. I was blue-lighted to A&E, then quickly moved into intensive care where they concluded I’d had a massive episode of hepatic encephalopathy. Due to my body not being able to process the toxins properly the ammonia levels in my brain had reached almost 200. Much more and I would have surely been in a coma or have died. Thankfully, I made a full recovery and was discharged after 11 days. I was prescribed Rifaximin and placed on the transplant list in October 2023 which was amazing. However, that was quashed when my fiancée decided she didn’t want to be with me anymore.

Through Christmas and into the new year my oedema and now ascites became much worse. My condition and losing the love of my life was affecting everything and by mid-March 2024 I had left my job and was being drained every few weeks as the diuretics weren’t really working anymore. I was going downhill and would go into hospital for a week or more at a time, get discharged and a couple of days later I’d be back again. By August I was in full time and was being drained of at least eight litres every week. I also now had a feeding tube which I hated at first. I’d have vivid dreams in the night and would pull it out, it was horrible.

By the end of August 2024 I was taken off the transplant list as I had become too poorly. Due to the shortage of livers they don’t have enough to fix everyone and people become too ill to survive the operation. The palliative care team talked about preparing for end of life, but I don’t remember feeling too upset about it. Prior to this I had been begging to be transferred to the transplant unit in Leeds, but I had now almost given up hope and didn’t want to be poorly anymore.

Ten months after my liver transplant I feel better than I have done in years; my fitness is almost back to my 20s, my meds have stabilised, my bloods are perfect and my post-hospital recovery has been ‘text book’

Amazingly on 16^th September I was told: “You’re going to Leeds!” I couldn’t believe it and was so happy. I was rapidly becoming more unwell and was extremely weak, shaky and could only slowly walk a few laps of the ward. The muscle degeneration was also evident. I was assessed by the transplant team, but I don’t really remember much from this point onwards.

On September 29th my bloods had become deranged and I was moved to ICU and put on kidney dialysis with a view to transplant re-listing. Two days later I was placed on the ACLF (Acute on Chronic Liver Failure) list and had multiple blood products overnight due to coagulopathy. The following day I experienced confusion and was put into a coma. I had an endoscopy and CT scan after developing melaena and became top of the transplant list. A potential liver was found but unfortunately it was too fatty, so couldn’t be used.

I was being kept alive by machines, was in a coma and literally had days to live before the miracle happened! Another liver was flown in and at 6.30am on Monday 7^th October I was taken to theatre and came out around 3pm after my transplant and umbilical hernia repair, with the liver actually starting to work while I was still on the operating table.

The following day I was extubated and woken up after seven days in a coma – I don’t remember much other than the staff being very kind. Two days later I started experiencing delirium and was put back on dialysis to give my body a chance to recover. The next few days I struggled with breathing and coughing up the grey sputum from being on the ventilator during the coma and was unable to talk. This went on for at least two weeks and one of the physios brought me picture cards and a whiteboard to help me, but I still couldn’t communicate, which was so frustrating.

Posterior Reversible Encephalopathy Syndrome

I was still struggling with other problems when I suddenly had a massive seizure and a drop in consciousness and was put back into a coma while they tried to work out what was wrong. I had developed PRES (Posterior Reversible Encephalopathy Syndrome) due to a reaction to the medication and after an MRI of the head and a couple of days of medication changes, I was woken up for the second time and came off all ICU support.

A few days later I was moved to the post-transplant ward where I spent the next month. My recovery was very up and  down, I had lost so much weight and muscle mass (20kg! I only weighed 72kg to begin with) so I was extremely frail. I went from not even being able to lift my head off the pillow, to just about sitting up, then starting to stand, to walking with a Zimmer frame, then finally walking with a crutch. It was a real struggle and I had to learn to do everything again – speak, walk, eat and write. But I was determined – I had Nanna Cheryl’s Boxing Day Party to get to and that became my target. Remarkably I ended up leaving hospital on 14^th December and made it to the party!

Through it all I had some of the absolute best doctors and nurses I could have ever wished for. Their patience, kindness, dedication, skill and care was incredible and I am eternally grateful to them!  Ten months on and I feel better than I have done in years; my fitness is almost back to my 20s, my meds have stabilised, my bloods are perfect and my post-hospital recovery has been ‘text book’. I’ve joined the gym and try to walk a few times a week and keep fairly active. The only thing I struggle with a little is getting tired at times, but if that’s all it is, then I’m good with that!

For anyone on the list or waiting to maybe go on the list KEEP GOING, it really can and does change your life! Good luck to everyone out there and thank you for reading my story!

The post James’ story: “If you are on the list or waiting to be listed KEEP GOING, a liver transplant changes your life!” appeared first on British Liver Trust.

My story is a little different but may resonate with anyone who didn’t have liver disease but acute liver failure and a super-urgent transplant.

Previous to July 2023, I was a pretty healthy 53-year-old with stable asthma and coming to the later end of menopause. I had gained some weight but was active as an off-shore sailor with my husband and enjoyed exploring beautiful places across the Mediterranean.

Then I got sick, very sick, very quickly. Over the course of 48 hours I went from feeling I had heat stroke to full-blown acute liver failure and the cause is still unknown. I was rushed to hospital in Alghero, Sardinia, and onward by helicopter to the university hospital in Cagliari on the south of the island (and a three-hour drive for my husband who was told follow on by road).

Urgent transplant needed  

There they tested me for everything they could and found no answers. I was going downhill rapidly and it became clear my only chance was a transplant, either in Sardinia or a medical evacuation to UK. Thank heavens for GHIC (the UK’s reciprocal health agreement with EU) which covered all my emergency care and would have covered a transplant in Sardinia. We had excellent travel insurance and after a few niggles (proving I hadn’t withheld an existing condition) they arranged an ICU-equipped flight back to the UK and I went straight into ICU at Addenbrookes – ironically where I’d worked as a nurse for 20 years!

The team were waiting for me and they were amazing and reassuring. They had all my notes and scans from Cagliari, did more tests and then listed me. A liver was found within 48 hours (my window of opportunity) and I had my transplant.

I spent the next week sedated in ICU so my memory is a bit scattered, but I recommend a follow-up visit with the ICU team once you have recovered – it really helped me piece my journey together. I had two further weeks on transplant HDU due to infections, which included my birthday and I still have the video of the staff singing me Happy Birthday and presenting me with a birthday card signed by them all. It made a tough time just a bit easier, as did the foot massage from a student nurse later in the day, after her shift.

My old liver has been given to research, I am still none the wiser as to what caused my failure as all tests have returned negative results, the best guess is some kind of immune system reaction to a food poisoning virus or toxin.

I had a couple more weeks on the ward followed with physios persuading my muscles back into action before I continued the rehab work at home with a fabulous personal trainer – I now go to the gym three times a week for guided fitness.

I’ve had two episodes of rejection and have just had my incisional hernia repaired. My first rejection episode came only 12 weeks after my transplant and was treated with high doses of steroids, these came with their own side effects so when I had a second rejection this year, the transplant team tried really hard to manage it with adjusting my anti-rejection meds only. This worked briefly but a biopsy taken during my hernia repair showed I needed the steroids again, which are doing the job and the side effects are better managed this time,  so I’m onwards and upwards now. I went back to sailing 11 months after my transplant and will be again as soon as I’m cleared after this surgery recovery. I am also back working in a non-patient facing education and coaching nursing role.

Lifesaving donation

My old liver has been given to research, I am still none the wiser as to what caused my failure as all tests have returned negative results, the best guess is some kind of immune system reaction to a food poisoning virus or toxin.

I think of that night – 7th July 2023 – every day, I got a new chance to live while my donor family had to make the most difficult decision to respect their loved ones wishes and allow their organs to save more than just my life.

My family have been absolute stars – they had to watch the trauma unfold and be there and be strong for me every step of the way. The online peer support groups I’ve joined have been a great place to ask questions and find answers. And as for the transplant team, just what can you say, their dedication and work they do is phenomenal!

The post Carole’s story: “I got a new chance to live while my donor family had to make the most difficult decision to respect their loved ones wishes” appeared first on British Liver Trust.