When I was around 23 years old, I kept waking up with a very sore abdomen, particularly on my right side – it felt like someone was hitting me with a baseball bat. My GP said it could be IBS, gave me some medication and sent me away. I just knew it wasn’t that, so I went back and he said: “No problem” and arranged an ultrasound.

The radiographer asked for a second opinion because my liver and spleen were quite big. Nobody knew why and I ended up seeing a general medical consultant which wasn’t a pleasant experience – in front of my mum he asked if I abused drugs or took herbal medicines. When I said no, he referred me to King’s Hospital for blood tests and they found I had a rare condition called Budd Chiari Syndrome.

The ultrasound had also found ascites, so I was prescribed diuretics and some aspirin to thin the blood. I had six-monthly reviews at Kings and because I knew how to look after myself and had a sensible lifestyle, things went well. However, in 2020 when I was 36, I ended up in hospital for three weeks because I had accumulated around 13 litres of ascites and developed spontaneous bacterial peritonitis. It was at this point I was told I might eventually need a transplant.

Once I was treated, the ascites was resolved and I surprised everyone by going back to normal. The transplant was put on the back burner, but they did a TIPPS procedure on me which failed the first time, but a second procedure helped the blood flow in and out of my liver better. I then carried on with my six-monthly check-ups until my AFP blood test came back a tiny bit elevated in February 2023. I had no symptoms and didn’t think anything of it, but my consultant immediately asked for a CT scan and they found a small lesion, which they believed was HCC.

Tumour capsule

Although I had always known that Budd Chiari causes cirrhosis and has a risk of cancer, the diagnosis still knocked me sideways. How could I possibly have cancer? I wasn’t even 40.

I was booked in for a liver resection at King’s in August 2023, but when I woke up after surgery I didn’t feel in enough pain considering what I’d had done. I could also tell by my family’s faces that something had happened. My surgeon said there was more fluid around my liver than they had anticipated and the tumour capsule was quite exposed so a resection could have resulted in liver failure. They would assess me for a transplant instead.

My tumour was around 3 – 4cm when I was listed in November 2023 and despite being a bit anxious, I generally felt really positive. I had radiotherapy, which aimed to give me a larger window of opportunity for a transplant, and my body managed it really well. The tumour stalled, my AFP came down and I continued to work and tried to be as normal as possible (which is probably a coping mechanism). My doctors hoped I would get a new liver within 3 – 6 months.

I didn’t have any calls for a liver match until February 2025 when I got two. The first time they had to pull out an hour before the surgery because the liver wasn’t in the condition they thought it would be from the scans. Ten days later I was back at King’s for a CT ablation on the tumour as it had grown and while there, the transplant coordinator said there was another match for me, so the ablation was cancelled. Unfortunately, I developed a temperature overnight, so wasn’t well enough for surgery. I was upset and frustrated with myself but didn’t hold onto it and was pleased the liver could go to someone else.

In May 2025 my tumour marker was over 1,000 and I was suspended from the liver transplant list while they got to the bottom of it

Although my tumour markers in my blood tests were elevated, they were always under control because of the radiotherapy, until May 2025 when the marker was over 1,000. I was suspended from the transplant list while they got to the bottom of why it had shot so high in just a month. The radiotherapy had done its job to a point, but because I couldn’t have my transplant the cancer became active again. I was distraught.

After many discussions over the best course of treatment I was given proton beam therapy which finished in mid-July. At this point my AFP was at just over 2800. I’ve got a few broken ribs because the treatment weakens them, so physically I’m quite sore, but the results are already showing a decreasing AFP. Now I need to eight to ten weeks of monitoring to ensure the results stay that way. I would hopefully like to be back on the transplant list by end of October 2025 and it can’t come quick enough for me.

I’m still working as a teacher and SENCO (Special Educational Needs Coordinator) and there’s no problem if I need time off for an appointment as work are incredibly understanding and supportive. I like going into work because it brings normality and routine which is really important for myself and my family life. My husband and both our families have been amazing, as have my friends and I am so grateful.

I worry about the impact of any news on my family. I am very good at hiding how I feel and try to find the positives in any situation. Although it’s natural for people who care to worry, I don’t want my anguish to be the cause of theirs.

British Liver Trust support groups

My son is 14 and has always known I have liver problems – we’ve told him mum’s going to get a transplant and that’s the best treatment. He’s such a great kid and I always tell him to ask if he has any questions which he does.

The relationship you have with your doctors is so important and mine are phenomenal. They treat me like a real person and not a patient. I could tell them anything and they would sit there and listen. They’re obviously very intelligent people but they’re also very down to earth. I wholeheartedly trust them.

The British Liver Trust’s Under-40s Online Support Group and Pre and Post Transplant Online Support Group are also great. I get a lot from them and have made some nice relationships with some inspirational people and finding those connections has been really important. As well as following the Trust on Instagram, I’ve also created my own Instagram page to compartmentalise my cancer diagnosis and transplant journey because I don’t want it to take over who I am as a person. It’s also a good way to raise awareness of liver cancer and organ donation.

I’m desperate for a transplant before my treatment wears off and just want to feel better and get back to being me. That’s why I decided to share my story. If your loved one or child was waiting, you would want them to have their transplant as soon as possible, but there aren’t enough donors out there. Everyone is now automatically opted into organ donation, but families still have the final say even if their loved ones previously consented. I want to urge people to please take a moment to read up about it and make sure everyone is aware of what you’ve chosen to do.

If you’re waiting for a transplant, do what you need to do for you and validate every feeling you have. Enjoy the days you feel physically and emotionally great – and when you’re not – that’s OK, but keep looking in a forward direction and have the happy ever after always in your mind.

The post Kerry’s story: “I’m desperate for a transplant before my treatment wears off and just want to feel better and get back to being me” appeared first on British Liver Trust.

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

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

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

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

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

Coughing up blood

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

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

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

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

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

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

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

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

Rejection issues

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

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

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

My old liver was found to have a cancerous tumour after they took it out, so I was put on chemotherapy tablets on Boxing Day 2021. However, I had an allergic reaction and spent four days in Queen Elizabeth Hospital in the new year. I was incredibly itchy and literally tearing my skin off. They said I didn’t have cancer, but cancerous cells so I could either “run the gauntlet” or carry on with the chemotherapy I was allergic to. I chose not to have the chemotherapy. Now every time I have an appointment at the hospital I have to pop over to the oncology department for scans. So far so good, there are no cancerous cells.

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

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

Feeling wonderful

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

Other than that I feel wonderful and am looking after myself. I enjoy life, live as best as I can and must be the only bloke who doesn’t moan about Mondays – it’s a day of my life and it’s great. After the divorce I bought myself a new house and moved out into the country. My father is still very supportive and I met Michelle at work and she’s wonderful too. I’ve also joined a local group for men who like to walk and talk. We recently did a 6.5km trek around a nearby woodland and I’ll be meeting them again. I work from home, so it’s good to get out of the house and talk to people and get a bit of exercise too. I think about the gentleman whose liver I’ve got and his family an awful lot – I’ve written them a letter to show my appreciation.

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

The post Dylan’s story: “I wondered if I was a functioning alcoholic, but I got up every day and went to work five days a week” appeared first on British Liver Trust.

I’d never heard of primary biliary cholangitis (PBC) when I was diagnosed with it in 2000. I’d been experiencing terrible itching and when I went to see my GP, he said I also looked quite yellow. He suggested a blood test, after which I was referred to my local hospital and the following week I saw a gastroenterologist. The diagnosis was confirmed after a biopsy.

The gastroenterologist gave me a few leaflets, said I would be monitored and would probably need a transplant at some point in the future. I was referred to a hospital with a specialist liver unit, put under the care of a hepatologist and prescribed urso. It slowed the progression of the illness, but didn’t help with the itching – it was everywhere and felt like insects crawling over my skin.

Over the years I had regular tests, but wasn’t feeling great even though my liver was still functioning quite well. The PBC went from stage 3 to stage 4 over a period of three years. I had a lot of stomach upsets and the tiredness became really bad – it was like walking through custard. I’d reduced my work hours, but there came a point where I had to stop working completely.

Liver functioning well

By 2016 FibroScan results were showing I had cirrhosis. I’d been having gall bladder problems and when it was removed my liver started bleeding quite badly. I was in hospital for quite a few days. In February 2019 I had a terrible evening bringing up and passing blood. It was a variceal bleed and when they did the banding they found more varices. I spent time in ICU because I was losing a lot of blood and they couldn’t control it. I had more and more endoscopies, my fibroscans were in the 20s and I felt dreadful, but my consultant said my liver was still functioning quite well.

In June 2019 two days into a holiday, I got an email from my consultant saying AFP markers had been detected in my blood. I asked what AFP markers were and he said they could mean tumours or growths. It was a shock to be emailed this, I really think I should have been told in person.

My consultant arranged a CT scan but I couldn’t get the results as he was on annual leave. I ended up speaking to a registrar over the phone who said they’d found a shadow and would arrange an MRI. That didn’t happen so I had to do it myself and after six weeks my family and I were very anxious as I still hadn’t had the results. I phoned the British Liver Trust’s Nurse-led Helpline who confirmed I shouldn’t have to wait that long.

The British Liver Trust’s nurse-led helpline is so good and reassuring

My husband eventually rang the consultant’s secretary and I got a phone call that evening. My case was supposed to have gone to an MDT meeting, but had been missed off it so I had to wait another week. It wasn’t satisfactory at all. My consultant said I had hepatocellular cancer (HCC) – there were two tumours, but because one was too near my lung they couldn’t operate, so the only treatment was a transplant. Other treatments wouldn’t work because my liver was very fragile.

I hadn’t realised that PBC could lead to HCC so it came as a shock. I called the British Liver Trust’s Nurse led-helpline and they explained what HCC was and what the markers meant –speaking one-to-one with a nurse was better than ten minutes in a consulting room. I called the helpline again when I was on the transplant waiting list and was feeling quite anxious. They were very reassuring, the British Liver Trust is just so good.

Then everything went pretty quickly, I saw a liver oncologist, had an embolisation process to stop the tumours enlarging and was also drained of acetic fluid a few weeks later. I passed the transplant assessment and was put on the list. Two weeks later I got a call, but the liver wasn’t suitable, neither was the second five days later, but the third liver was a match, just 38 days after being on the list. I had the transplant in December 2019 and was home 10 days later. Following the transplant, a third tumour was discovered on my old liver.

Feeling guilty

When the pandemic restrictions started in 2020 I wasn’t allowed to go to clinic on public transport and my medication was delivered to me by post. In a way lockdown allowed me to recover, but as things began to open up again I felt very depressed. I didn’t feel I could go out and wondered if it had been worth having the transplant. I felt guilty too and that the liver should have gone to somebody more worthy. My consultant asked if I wanted to speak with someone – and the woman I saw was really good and helped a lot, but I still feel like that now and again.

Physically, I’ve been doing fine – my liver function tests are spot on and my medication is adjusted as and when is necessary. I came off the steroids very quickly and am just on the usual immunosuppressant drugs and that dose has been lowered. However, I’m wondering if the drugs are causing pain in my ankles and shins, it’s rare but it can happen. It started about six months after my transplant which seems a coincidence. There are days when it’s really painful, especially when the weather’s hot or if I do a lot of walking. It wakes me up at night so I have to keep taking paracetamol which I don’t want to do because it could damage my liver. I’ve had an MRI and electrical tests which say there’s nothing mechanically wrong with my legs. I don’t want to live in pain for the rest of my life – I went through my transplant to feel well.

When I learned the British Liver Trust was inviting HCC patients to speak about stigma at a conference for healthcare professionals I volunteered to take part. The organisation is brilliant and I wanted to give something back and sharing my experiences felt so worthwhile.

I told the conference about encountering stigma in 2001 at my first-ever endoscopy when a nurse said to me: “You’ve brought this on yourself”. At the time I didn’t give it a lot of thought because I was partly sedated and worried about the procedure. The next time was when I was on antibiotics and went to the dentist. She made assumptions that I must be an alcoholic and told me I shouldn’t be drinking while taking them. She’d probably never even heard of PBC. I was angry, but again didn’t say anything. There are many reasons why you get liver disease – not everyone drinks alcohol or takes drugs.

To anyone in a similar situation to me, I would definitely say contact the British Liver Trust because they provide so much help and information and are really compassionate about it. And always ask lots of questions.

The post Diane’s story: “I hadn’t realised that primary biliary cholangitis could lead to hepatocellular cancer, so the diagnosis came as a shock” appeared first on British Liver Trust.

When Janet was placed on the liver transplant list in 1996, she held on to the fact that the longest post-transplant survival at that time was 15 years. In fact, her donor’s generous gift gave her 27 more years with her family. Now Janet’s daughter, Rachael, shares her mum’s experience of living with a long-term liver condition. Thank you, Rachael 

Mum was the heart of our family and lived her whole life for us and her faith. Her death in September 2024 has left such a huge gap, and we’re not just grieving for Mum, but also for the donor liver she received in 1997. The generosity of her donor and their family gave us 27 more years with her that we otherwise wouldn’t have had.

Mum first started feeling a bit unwell in early 1995 and went backwards and forwards to the doctor who put it down to the menopause. Then in the summer of 1995 she developed a distended stomach and became jaundiced. Blood tests confirmed cirrhosis and the GP asked if she drank, but Mum had never been a drinker.  She was now quickly referred to the Queen Elizabeth Hospital in Birmingham for more tests and her doctors thought it was either primary biliary cholangitis (PBC) or primary sclerosing cholangitis (PSC). Mum was placed on the transplant list in 1996.

Liver transplant

At this point PBC had only just been recognised by the medical profession as a disease, so Mum wasn’t on a lot of medication. She was in and out of hospital with oesophageal bleeds, had lost a lot of weight, was jaundiced and itching was a big issue, but she battled on. Her faith meant a great deal to her, so she prayed a lot and threw herself into cooking, baking, gardening, and fundraising. Because she had to have a low-salt diet she created lots of no-salt recipes that impressed the doctors and she teamed up with the dietitian to produce a recipe book for liver disease patients.

Just three months after being put on the transplant list Mum got the call. They didn’t say they had a liver but asked what her health was like and told her to make her way over to Birmingham. She was taken to theatre the following morning and the transplant took eight hours to complete. Mum came out at around teatime and was put on a ventilator in intensive care. After spending the night there, they woke Mum, got her out of bed and she walked to the high dependency unit.

The morning after the transplant the first thing we noticed was that Mum was a lovely pink colour, it was wonderful to see because she’d been so yellow. She was in hospital for just ten nights in total and had some rejection issues about six months later which led to her steroid dose being adjusted. Otherwise, she had a really good recovery. Mum had been terrified of the transplant but was also overjoyed to get it because she’d been given a new chance. At that point the longest transplant survivor was 15 years and she was holding onto that.

Mum knew there was a chance that the primary biliary cholangitis could return

It was only after Mum’s transplant that PBC was officially diagnosed and around 10-15 years later it came back in the new liver. Mum knew this could be a possibility and she also developed other autoimmune conditions such as coeliac disease and Sjögren’s syndrome. Doctors prescribed ursodeoxycholic acid to slow down the progress of the PBC – she took it for quite a few years and was more or less all right, but gradually things started getting worse. In 2021 she developed fluid retention, her kidneys started failing and oesophageal varices were discovered during routine screening. She was given more medication, but another transplant was out of the question because she was now 80 years old.

Again, Mum refused to let her illness stop her and she continued gardening, cooking and baking until the start of 2024 when her health really started to deteriorate. We noticed she was getting more tired and had no energy – where she’d normally pushed herself, she was now sitting more.

Things now became very difficult for Mum. From May she was in and out of hospital with complications and suffered terribly with severe oedema in her legs and ascites which she had drained. She was fortunate not to have any bleeding from the varices but the hepatic encephalopathy was the worst. It started with slight memory problems, then progressed to tremors, slurred speech and unsteadiness on her feet which resulted in her falling and fracturing her hip. She had her hip fixed but never walked again. In spite of everything Mum was so brave and never complained.

Grateful to donor

Mum was admitted to a hospice on August 16^th 2024 and we spent her final four weeks there with her before she passed away. She had said her biggest aim was to get to her 80th birthday and celebrate her and dad’s 60th wedding anniversary. Both she and my dad were 80 in 2023 and they had a big celebration for that, and spent their diamond wedding anniversary together in the hospice eleven days before she passed away.  So she managed to achieve both.

I’m so proud of my mum and love and miss her every single day. We’re so grateful for the extra time the donor gave her. After the transplant, Mum had written to the donor’s family to thank them and would also send a card every year on the transplant anniversary. She hoped they might reply, they never did, but we understood and respected that. At Mum’s funeral we mourned the donor liver as well as her.

I’m a healthcare professional and work in theatres so I’ve seen both sides of the transplant process.  Around 10 years after Mum’s transplant I was involved in an organ retrieval. It’s obviously awful for the family, but being in the operating theatre and seeing the different teams arrive for the organs and the transplant coordinator saying the names of the people they will go to, makes you realise just how important organ donation is.

I know Mum would love me sharing this story because what her donor and their family gave us is priceless. They kept her alive for 27 more years and enabled her to meet my two children. Words cannot express the importance of that.

The post Rachael’s story: “We’re so grateful for the extra time that Mum’s donor gave her” 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!

The post Pete’s story: “I lost 53kg before my liver transplant because lose weight or die is a fairly persuasive argument.” appeared first on British Liver Trust.

I was diagnosed with Primary Biliary Cholangitis in 2007 and didn’t experience any symptoms before that or over the next 17 years.  After being put on medication for the PBC my bloods were always normal. I had an annual screening for cancer as I learnt that with my condition I was predisposed to liver tumours. I also went for liver scans annually at my local hospital in Stoke on Trent and was clear until 2022 where one, then two, tumours were found.

I was told a liver transplant was the only route for me which was totally shocking as I felt normal. I underwent chemotherapy with a procedure called TACE to bridge some time while on the waiting list for a transplant and again had little symptoms post chemo (I was lucky, I guess).

I then received THE call early in 2023, four months after going on the transplant list and with a few previous false alarms I went for surgery to the Queen Elizabeth hospital in Birmingham. My donor was a person who had suddenly died and with my previous profession as an intensive care physiotherapist I knew such donors are like gold dust. I questioned the surgeon doing my operation “How come I’m getting this liver?” and the answer was astonishing. He/she said: “Your liver is recycled”. So I was receiving an organ from someone who had been a transplant patient.

Quoting my father as to whether to accept this organ was an ‘an enigma wrapped up in a dilemma’.

What were the added risks? What of the increase in antibodies as this liver had travelled through two other people before coming to me? Have I now three armies of antibodies fighting this organ? No-one could answer the questions easily as available data is scarce as only 10 other people world-wide had undergone this surgery.

Liver tumours

The medical staff were reassuring in explaining that all eventualities could be treated with medication and they would be super-vigilant in my case. My family and I discussed the situation and we all came to the conclusion that I was super-fit for surgery and if there were to be any problems, I was well equipped to deal with them. So we agreed to go ahead. Alarmingly another tumour was found during the operation – my liver was a ‘tumour-making machine’ and so I would have deteriorated very quickly without the transplant so the timing was perfect.

I am reluctant to know how the other 10 patients are getting along health wise. It’s such a low number of case studies and statistically I’m not sure if they are in my favour.

Surgery went extremely well, hospitalisation didn’t bother me as I am so familiar with the environment including ICU. I was totally at ease with the monitors, procedures and if I, as a chest physiotherapist, could not manage my own physio…simply no excuse.  So I self-administered all the physical therapy and, quoting my children, ‘You smashed it, Mum’.

I’m not saying it has been an easy journey, the anti-rejection meds have their own risks and this is the price you pay to stay alive.

I have been readmitted with gastro-enteritis, self-inflicted with food poisoning we think, from my French husband’s cooking! There was another admission in August, scarily, I was not unwell at all, but my bloods were not right. A biopsy revealed severe rejection which was treated very successfully with Prednisolone. What a way to spend my 66th birthday! More recently I had a potential problem with kennel cough, but that is another story.

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs and the process needed to get there. Through working in ICU I have treated heart, lung and kidney transplants (recipients?) and helped ‘keep alive’ people who are potential organ donors by doing chest physiotherapy.

I have since met many organ recipients when I attended the British Transplant Games in Coventry in 2023 as a spectator. I also went to a golfing event at the Warwickshire golf club with my son, where I had the pleasure of meeting like-minded folk all with amazing stories to tell. I have set up a Golfing Society based in the Midlands called the Mulligans – a term used in golf to give you a second chance. We had our inaugural Golf Day in May this year and attendees consisted of transplantees, people who had donated organs as a live donor but also family members who had donated their loved one’s organs when they died. It was all very levelling and not a dry eye in sight. There has been a lot of interest nationally and I would like to set up golf societies to represent every corner of the UK.

The anniversary of my operation rendered me very emotional as I reflected on the families mourning the anniversary of the death of their loved ones, but as one of the consultants said: ‘Remember they volunteered to donate their organs’.

I plan also to rekindle my love for squash as I am a regular racquet ball player and maybe enter the Transplant Games in the over-60s category, paracetamol on hand!

Organ donor wishes

In summary, I would say the case of all people who have received organs there is no easy way to show your appreciation because of the trauma other people have endured. The least I can do is help to spread the word as I also know how many people, young and old die whilst waiting on the transplant list.

I’ve also learnt that despite the National Mandate where we are all donors unless we opt out that families can still reverse that policy simply because they are unaware of what their loved ones would have wanted. The message here is: tell your family your wishes and spare them the heartache of making that decision.

I have been lucky from the start and I will never undervalue the team, the process and the outcome.

On each anniversary of my transplant I will be happy but equally sensitive to the two families who are remembering their loved one. I was widowed 33 years ago and July 21^st is still a poignant day for me.

But now, hopefully, I have a long life ahead and a duty to perform.

The post Mandy’s story: “I was receiving an organ from someone who had themselves been a transplant patient. What were the risks?”  appeared first on British Liver Trust.

Louis: It was just another normal day at work when I received a call from my sister’s husband informing me she’d been unexpectedly admitted to hospital with liver failure, she was in a declining state and would probably require a liver transplant to live.  This was a shock as no one in our family was aware of her having a problem.  So I decided to try to save my sister by donating part of my liver to her.

I’m the eldest in a large family and also the fittest, so I was the only one who could do it if I was suitable.  I started by visiting my GP for advice – she was very supportive – and to speed things along, she suggested doing some in-depth blood tests prior to contacting my sister’s medical team.

Unfortunately, the results of the tests indicated that I may have haemochromatosis, a condition that is caused by too much iron or iron overload which could mean my internal organs were damaged. It’s a genetic condition which affects males in a family more than females, but we had never heard of it. My GP said if other tests confirmed this, I would not be able to be a donor to my sister, and we now had to concentrate on myself until we found out what was going on.

I had no symptoms whatsoever and was still running and working out.

I was told I had hepatocellular carcinoma and the stress this put me and my family under was immeasurable

I was referred to a specialist and underwent an ultrasound test and MRI scans etc, I was then told I had hepatocellular carcinoma (HCC cancer)! The stress that this news put me and my family through was immeasurable – my poor sister blamed herself and suffered guilt and anxiety.  Her condition had gradually started to stabilise, but now I was the one in danger.  The good news was that they had caught the cancer early.

Donna: The doctors weren’t 100 per cent sure it was HCC at first as Louis was a non-secreter. (He did not have the cancer markers in his blood) We didn’t know what that meant or whether Louis should go through the TACE (trans arterial chemoembolization treatment), but the doctors said they wouldn’t know definitely whether it was cancer until they carried out the operation and also did a biopsy.

I consulted Doctor Google, which is never the right thing to do as this confused me even more, but eventually I found the British Liver Trust website which was absolutely fantastic. I called the Nurse-led Helpline and spoke to someone who had worked on a specialist liver ward – she explained what HCC was and she set my mind at ease. She explained that HCC is like a whack-a-mole cancer, once you’ve got one tumour, there’s a higher chance you’ll get more.

As Louis is a very fit man the consultants ended up doing three TACE procedures to treat his tumours which is unusual, but they said: “As long as your body can take it, we’ll keep doing it.” Unfortunately the call came after the MRI scan that the fourth tumour was inoperable and that’s when they said they wanted to do a transplant.

I phoned up the British Liver Trust again – I still wasn’t 100 per cent sure Louis had cancer, it had been confirmed on scans but not on his blood tests.

Louis was now going to be transferred to Queen Elizabeth in Birmingham for assessment as he was an ideal candidate for a full organ transplant. The British Liver Trust nurse explained that the transplant team would do their own investigations and decide if the transplant was needed and worth going ahead with.  That was reassuring.

Louis: The normal treatment for HCC is to go in through your femoral artery up into your liver and to the tumour, but because the inoperable tumour wasn’t responding, they decided to try an older form of chemo which is injected right into and around the tumour, It’s a very uncomfortable procedure as it expanded the surface area around the liver and you are fully awake during the procedure in the operating theatre.

A couple of weeks later a nurse rang, saying good news the latest MRI shows  “Your cancer’s gone” and due to the euphoria and shock. I forgot to ask any questions. I was still on the transplant list and had already been called twice to Birmingham for possible donor livers. Did I still need one?

So Donna rang the nurses at the British Liver Trust again and they advised us to ring the transplant unit and ask for my case to be reviewed at the next multidisciplinary team (MDT) meeting.

I got a call at 11.45pm a few days later telling me to get down to Birmingham as there was a liver for me.  At this stage I did not have cancer!

As I was being prepped for the transplant, I asked the medical team if I still actually needed it.  The surgeons and nurse had been in the MDT meeting when I was discussed, and they told me the top oncologist had said : “If Louis doesn’t have a transplant he could potentially die because his tumours will highly likely come back and could be more aggressive each time and could quickly go beyond the limit for a transplant!”  So I looked at the two surgeons and said: “Crack on, then!”

The British Liver Trust was my lifeline during the transplant procedure

Donna: The British Liver Trust was my lifeline during the transplant procedure. I knew I could call them if I wanted any information and they never rushed me.

They set my mind at ease and explained everything in detail.  The transplant team at the hospital were also fantastic keeping me informed during this major operation. All this was during COVID, so I found myself walking alone around the hospital grounds waiting to hear if Louis survived and if the transplant was successful.

Louis: When I woke up after the transplant the nurse explained about all the wires and pipes I was attached to and that all had gone fantastically.  Donna had told the ITC nurse at hospital that I wouldn’t say if I was in pain because I’m ex-military, and stubborn, so the nurse came in and hooked me up to a morphine drip to make sure I had enough pain relief.  She told me what my wife had said, this made me laugh ( painful).  Twenty four hours later I was moved out of ITC and on to a ward.  Unfortunately, thirty-six hours later a doctor popped his head around the door and said “You’re in acute rejection. See you in the morning.”

I spent all night panicking because the word acute sounds really serious.  If I had been thinking straight, I would have called the transplant coordinator or even the British Liver Trust because they explain everything in layman’s terms. In the morning the transplant nurse explained it was nothing to worry about and I was treated for it.

I had been put in to my own room and was managing to walk around and around it like a hamster on his wheel to help me get mobile.  I then found an app which allows you to do virtual challenges like walking up Mount Kilimanjaro, showing you on Google Earth where you are on the route by counting your steps, you could even meet others doing the same thing, it was very motivating. It really helped me.

I was discharged seven days after the transplant but had to go back a couple of days later to have my bloods checked where they then discovered my body was rejecting the liver again. I was readmitted and had another biopsy, was then prescribed steroids and another brief stay in hospital which sorted the issue.  I continue to be fully supported/monitored by the transplant consultants and haematologists at both QEH Birmingham and Aintree hospitals.

My liver function is now fantastic

Eighteen months on, the doctors are now gradually reducing my meds – unfortunately the immunosuppressants I’m on gives me a higher risk of getting cancer again because the body’s immune system can’t fight the cancerous cells as effectively so they need to find the dose that suits me best.

My liver function is now fantastic and I’m also running again. It is thanks to all the teams involved and to the fantastic gift from my donor and his family that I am alive!

I have decided to take part in the British Liver Trust’s Wing Walk to give something back and support the many people from all walks of life who develop liver-related conditions.

I checked with my doctor to make sure it was safe for me Wing Walk post-transplant and she said the only thing that I needed examining was my head!

The post Louis’ story: “My liver cancer was gone but I was still on the liver transplant list. Did I still need one?” appeared first on British Liver Trust.

The post Beryl’s story: “My message to anyone who reads this is to listen to your body and if something doesn’t feel right, insist on getting it checked out. “ appeared first on British Liver Trust.

The post Alan’s story: “Unfortunately, I was rejected for a liver transplant. That was really disappointing, but I understand why” appeared first on British Liver Trust.

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