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.

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.