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.

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.

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.

It started with the itch and I would scratch myself everywhere until it bled. I visited my GP for a couple of months and each time I got sent away with meds for scabies and told it was allergies. I then went yellow and spent three weeks in hospital while they worked out what it was.

I was diagnosed via biopsy which they say is the gold standard of diagnosing AIH. This, along with many blood tests, showed that I had the antibodies and severe inflammation with some scarring. At this point they said they could control it with medication and being monitored very closely. Luckily the high dose of prednisolone worked, so I never thought I would need a transplant.

Once discharged, I was in clinic once a week until it all settled down and eventually my appointments got down to every three months. I stayed like this for years, with just a few hospital admissions, including one long one for cmv complications. After I had my son in 2012, I had a massive flare-up – my liver enzymes went very high and I was jaundiced again. They tried many different immunosuppression tablets which either had to be discontinued due to side effects or just didn’t work. My numbers were bumbling along, not high but at the higher end of normal, but eventually I ended up with cirrhosis as there had already been significant damage when I was diagnosed.

Severe portal hypertension

I lived a relatively normal life for 12 years with varices that needed banding, severe portal hypertension which caused a huge spleen and surveillance every six months for any sign of cancer (which is the protocol for cirrhosis). I also had to go in every week for an infusion as my body could not control my electrolytes anymore.

Fast forward to November 2024 – I have always worked and loved my job, but I was feeling a bit off. I was struggling to get up and get through my shift, kept getting dizzy and also noticed my eyelids were really puffy. I mentioned this at my next clinic and had a phone call that afternoon telling me to come in straight away because I was in kidney failure. That also pushed me into decompensated cirrhosis and I ended up with ascites and encephalopathy.

I had no idea I had encephalopathy and thought I could hear all the nurses talking about me and saying nasty things, obviously it wasn’t true, it was the toxins going to my brain. I would also call my mum to tell her they were giving me drugs to keep me quiet, but I needed to gain evidence of it before saying anything, so she should keep quiet about it. It was very scary because it felt so real, but I could see my family didn’t think it was true and I was put on medication to hopefully prevent it or at least lessen the effects.

Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had

My team at my local hospital, along with my team at King’s, agreed now was the time to put me on the transplant list. Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had, but my liver was in such a bad way that I would never get better without a new one. I passed all the tests on the liver transplant assessment and was put on the waiting list.

Come January 2025 I needed drains most weeks and kept ending up in hospital with silly infections that would turn into serious ones. I also had an episode of severe encephalopathy, so they ordered an MRI which showed a brain aneurysm. I was suspended from the transplant list until the neurosurgeon teams could decide if it was safe, which they did. They also noted on my MRI that I had deposits of manganese on my brain. My consultant said that showed just how bad my liver was – it wasn’t filtering anything, just shunting it back into the blood stream.

I was put back on the transplant list on March 24th. At the end of April I arrived at one of my weekly paracentesis procedures looking extremely jaundiced and when the doctors saw my bloods, they said that I would be admitted until my transplant as I wasn’t stable enough to be at home. I was getting sicker day by day, but didn’t get one call about a potential new liver. Even though I hadn’t actually been on the list that long, it felt like a very long time.

The time I spent in hospital was very hard. I looked unrecognisable – I was swollen with so much fluid, bright yellow and my eyes were so yellow they looked green. My son didn’t want to visit anymore because it was scaring him – he’s only 13. I couldn’t even look at myself so I wasn’t surprised, but I missed him so much and didn’t know if I would see him again. I could see the strain it was putting on everyone, my family tried to put on a smile but I could see on their faces they were losing hope. I couldn’t eat anymore, I couldn’t wake up, everything hurt and deep down I knew I had days, if that.

So grateful to donor 

So when that call came at the end of June I was in shock. We were blue-lighted up to Kings and told it was 50/50 if it would go ahead, it did. As soon as I woke up in ICU after the transplant I felt better and already my head was clear. It was like a switch had been turned on and I was me again.

I’m so grateful for my donor and her family and think about them every day and will write to them when a bit more time has passed.

It’s been so hard on my family, they are the ones who got me through all of it and when I could feel the fight leaving me I summoned that last little bit to be here for them. I feel absolutely amazing now, I’ve had a few little bumps, including rejection, but I’m here and it feels great to be alive again.

I will be forever grateful to my family and the amazing liver team at Derriford who have basically kept me alive for 22 years – they are my guardian angels and also the amazing team at King’s. My colleagues at work have been super supportive throughout too, it’s a bad enough situation and work is the last thing you need to stress about so a big thanks to them.

If I can give any advice, it would be to remain as positive as possible and take one day at a time. Surround yourself with your closest ones and try and stay as fit as you can.

The post Emma’s story: “Remain as positive as possible and take one day at a time” appeared first on British Liver Trust.

When Ben’s father was admitted to hospital with alcohol related liver disease, the family fought to ensure he received the best care possible in a ‘critically ‘underfunded’ NHS. However, when the doctors said there was nothing more they could do, the family did everything they could to ensure their beloved dad’s final days were as comfortable as possible. Thank you for sharing your story, Ben  

My dad first started drinking at weekends when he was younger. He later became a functioning alcoholic for the last 30 years of his life following the death of his dad and best friend in quick succession, meaning drinking went from social to numbing. He and my mum separated when I was 12, but they lived only two minutes away from each other and he was always a great father.

It was only when my brother and I got older that we realised the quantities Dad was drinking and would sporadically raise the issue with him. He recognised it, but didn’t do anything about it and tried to hide it. Dad’s physical health began deteriorating rapidly in 2021 when he was 63 – his balance became a lot worse, there was muscle wastage and the smell of his breath became foul. Because he was a stubborn Northern bloke he’d never admit to being ill, so when he eventually said he felt awful we immediately took him to A&E. Dad was in and out of hospital for the next six months.

While the individual staff were brilliant, the NHS is clearly critically underfunded. Everyone knows it, but until it happens to you or someone close to you, you don’t realise just how bad it is. Dad stopped drinking and did everything the medical staff asked of him, but during his first admission he said to staff that he only drank two bottles of wine a week because he was embarrassed and wanted to go home. It was hard to get hold of medical professionals who knew about my dad to correct that information and even when I did, I wasn’t sure how much it was taken on board.

No liver ward

Dad’s first discharge letter was just two sentences long and he was given two types of tablets. We were appalled that no one checked if he had family or carers and if we hadn’t demanded that someone take him on again, he would have died within weeks. He should have been referred to the appropriate (liver) team immediately, like you would be if you had a heart problem. When that eventually happened they were great, but they needed more help. There was no liver ward, only a tiny office down the corridor for staff which was not always occupied. Both mum and I worked at the hospital so we could knock on people’s doors, but I don’t know how someone would cope if they didn’t know where to go or who to ask, or if they didn’t know how to use the internet. They’d be completely lost.

Now Dad wasn’t drinking, my mum noticed he was getting his old personality back and becoming more jovial even though he was very poorly. However, he was becoming very forgetful and the liver specialist diagnosed him with hepatic encephalopathy almost immediately. Dad was very ill at this point, but we were staying positive and continuing to do whatever we were asked as it was all we could do. However, by January 2022 Dad’s doctor said he was too ill for a transplant and the chances of him surviving were basically zero. Nothing can prepare you for a conversation like that. Everything became a blur and it was now all about doing what we could to extend his life for as long as possible, and enjoying whatever time we had left.

I stopped working, and my mum, brother and I took it in turns to care for him. Because I’d worked in healthcare since I’d left school and my mum had 30 years’ experience as an NHS occupational therapist, we were used to looking after people. However, Dad hated having his closest family do literally everything for him, especially when the itching and HE got really bad and he constantly needed the toilet. We were happy to help him, but the pain on his face from having to ask was hard.

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the hepatic encephalopathy set in, he was bored of almost everything because he felt so crap.

Food became a real challenge. Dad hadn’t like the hospital’s hot food, so they would just Leave sandwiches for him, but he never ate sandwiches before and was not about to start now. By the time we got him home and did our research on what we should be feeding him and aligned that with what he actually wanted to eat, he was weak and bedbound. I found that conversations about what he used to like eating proved really useful. When we chatted about that he said how much he used to like fish, chips and mushy peas. That night we had some and
he probably ate three times more in that meal than he had in the previous two days!

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the HE set in, he was bored of almost everything because he felt so crap. He could just about walk from his hospital bed in the lounge to the front door with someone keeping an eye on him, but it would knacker him out for a day afterwards. When we’d ask him what he wanted to do he’d say ‘nothing’, so we’d try different things and he always enjoyed them. Family would come and visit and we took him to Swanage one day in
his wheelchair. Although this was extremely tiring for Dad he really enjoyed it.

Constant itching 

The district nursing team were brilliant before Dad died, helping to sort out equipment and provided useful tips. It would have been amazing to have their help months before but, sadly, that’s not how it works. Towards the end Dad was delirious, constantly itching and in pain, and was unresponsive in his last couple of days. When Dad died on March 9th 2022, my brother and I walked in from a different room and quickly realised it was happening, we phoned my mum and she came over straight away. We were all together.

Immediately afterwards the family did a whole load of nothing, apart from just being in each other’s presence. After a few months I had counselling. I had been quite sceptical of it, but it was what I needed. Just being able to talk to and cry to somebody other than my family – I would really recommend it. Eventually my emotions stopped occupying every minute, I found the energy to do things again and I returned to the gym and started a master’s degree in nutrition.

Mum only found The British Liver Trust by Googling a while after Dad had been diagnosed, it hadn’t been signposted by the hospital. It was only after he died that we started thinking about sharing our experience to help families in a similar situation. I also volunteered with the Trust’s publications team and a dietician on how to encourage people with cirrhosis to eat and contributed to the Questions To Ask Your Doctor web page. I remember being so blown away by the magnitude of what was happening with Dad that we didn’t take in what the doctors were saying. It’s so easy to be tongue-tied during your appointments and only remember afterwards what you wanted to ask, so hopefully the template can help.

Knowing about the information and support provided by British Liver Trust earlier would have been invaluable and I would recommend that people go straight to their website rather than relying on a busy hospital to provide that. We were in the dark for the first few months and the hospital can only tell you so much before they get the results back.

Ben’s close shave raises more than £2,000 for the British Liver Trust

The post Ben’s story: “Knowing about the information and support provided by British Liver Trust earlier would have been invaluable” 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.

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

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

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

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

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

Decompensated cirrhosis

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

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

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

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

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

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

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

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

Liver disease pathway

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

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

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

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

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

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

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

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.