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.

In 1985 I started feeling lethargic and was being sick after every meal. I’d been to my doctor several times and to the gastroenterologist a couple of times. By 1986 I was feeling really ill – I was jaundiced, had ascites and had been drained a couple of times. I took an overnight bag to my next hospital appointment in March and told my consultant: “I’m not going anywhere until you sort this out”.

I was admitted and sent to various places to have tests done, but they couldn’t work out what was wrong. At one stage they thought it was liver cancer which knocked me for six but then changed their minds. They eventually came up with Budd Chiari and explained as much as they knew, but didn’t know what had caused it. I was asked if I’d been to India and drunk lots of tea. Otherwise, they weren’t doing a great deal and had more or less given up on me.

Ambulance to Addenbrookes Hospital 

By July one of the ward sisters said: “Ian, you need to get out of here and get a second opinion” so I discharged myself. As soon as I did my GP said: “Thank God you’re out, I couldn’t touch you while you were in there”. He arranged an ambulance to Addenbrookes Hospital for me the next day and within a couple of hours Professor Roy Calne had examined me. He told me I needed a transplant quickly because I only had about three weeks to live. I was only 36 years old.

I was sent to Kings to be assessed and they did all sorts of tests, putting hoses in every hole in my body and if there wasn’t a hole they made one. I was then sent back to Addenbrookes. I was a bit out of it by this point because of the toxins so I’m not sure how long it took before a new liver was found, but not very long, I think. I had the procedure at 6am and it took 13 hours.

They didn’t explain to me or my wife what was going to happen because they didn’t in those days. After the transplant my wife nearly passed out when she saw me in intensive care with hoses down my throat. The recovery was tough, within a few days they got me up and walking around with all this fluid running out of my scar. After a week or two I was shipped to King’s to recover and was in hospital for a total of seven weeks.

Some liver transplant recipients find it difficult to think they have another liver inside them, but I didn’t have any of that

My recovery was slow but sure and after six months I played a round of golf and raised £1,000 which I presented to Sir Roy Calne at Addenbrookes. It took about a year to get back to normal. Some transplant recipients find it difficult to think they have another liver inside them, but I didn’t have any of that.

I worked for Coca Cola as an area manager at the time and they were very good indeed – they sent my wife flowers every week. They weren’t that keen to take me back after the transplant as it was all fairly new then, but that was OK as we had our own business running parallel to it and they gave me the company car when I finished there.

Until I explained that it was Budd Chiari syndrome everybody thought I had alcohol related liver disease. It didn’t upset me because I’m pretty thick skinned. I found that people who knew me and knew it wasn’t alcohol would sometimes cross the street when they saw me because they didn’t know what to say.

One day, five years post-transplant, I had a phone call from Kings asking if I would be interested in taking part in an experiment which had been tried in America. I said I would as long as I was the first in the country to which they agreed.

The procedure was that I would stop all my immunosuppression drugs from day one of being in the hospital and monitor my bloods daily to check the ALT levels. If they reached 100, they would put me back on the drugs and I would be ok. Every day the levels went higher and higher until after about five days they reached 95, the following day they were 95 and the next day 92 and every day after they came down and eventually they stabilized at 42 which is where it stayed for the next 18 years without any anti-rejection drugs whatsoever. Unfortunately several other people who tried it didn’t survive and to this day I think I am the only patient who survived this experiment.

Life of transplanted liver

They reckoned then that the life of a transplanted liver was about 15 years which is more than I would have had otherwise, but it lasted 23 years. I then started feeling ill again, with similar symptoms to before. Again, I was assessed for a transplant, had several meetings with the consultants at Kings and was eventually put on the list. It was several months before I had the first phone call and an ambulance blue-lighted me to Kings and prepared me for the transplant. At 4am the surgeon came in and I thought “here we go” but he said: “I’m sorry the liver’s not good enough for you”. I was obviously quite disappointed and got the next call a month later. It went ahead that time. In between all of it there were various operations. I had to have two biliary reconstructions, my gallbladder was removed and I still get cholangitis attacks.

There was a lot more information before and after the second transplant, I knew what to expect anyway and was out in seven days. What I really would have appreciated is to speak to someone who had had a transplant to allay any fears. I’ve offered this service to my local hospital, but they’ve never taken me up on it.

I’ve been transplanted for 38 years in total.  I’m a real success story. I don’t know how many other people out there who have been as long or even longer. I just wanted to let people know that it is a successful operation.

The post Ian’s story: “I’ve been transplanted for 38 years in total. I’m a real success story” appeared first on British Liver Trust.

What I’ve learned from my experience is that no-one knows your body better than you.  If things don’t seem right, get it checked.  Like most people, I put off visiting the doctor but thanks to my family and some wonderful medical staff, I was diagnosed in time to receive life-changing treatment.

In April 2015, I moved to Scotland to start a new job which involved significant overseas travel – in the region of 12 to 16 weeks each year. About eighteen months later, in September 2016, I started feeling very fatigued and lacked the energy to complete tasks that wouldn’t have made me feel that way previously. There were other signs that something wasn’t quite right. For example, while looking for a suit for a friend’s wedding that month, I noticed I had put some weight on and that previous sizes were no longer accurate. This led to me feeling uncomfortable and uneasy. It was certainly a strange feeling but I put it down to elements of my lifestyle at the time.

About a month later, I went to Saudi Arabia for work and on occasions found it very difficult to get out of the SUV taxi that I was travelling in on a daily basis. I knew something was wrong.

When I went back to the UK for a few days off and to celebrate a friend’s birthday, things got worse. I was coughing a lot and experiencing difficulties in breathing, with notable chest and back pain with my stomach feeling ‘full’. It was increasingly difficult to sleep flat lying down as this was causing discomfort and led to restlessness. I called in sick to work and booked an emergency GP’s appointment with a locum and was given antibiotics as it was believed I had a chest infection.

A few days later I travelled down to London to see family as I was due to fly out from Heathrow to Dubai for work, so I decided to spend time with my dad and take him to an American football match at Wembley Stadium, which I had purchased as a gift for his 60th birthday. He noticed my feet were swollen and that I had to take breaks in between short walks to and from locations. He suggested going to A&E as he had seen this type of thing in my paternal grandfather who was diagnosed with a heart condition and one of the symptoms was swelling caused by fluid retention.

I also regularly travelled to parts of the world where alcohol consumption wasn’t permitted, such as parts of the Middle East, and in general was fairly confident in my assertion that alcohol wasn’t the direct cause of my ill health.

Initially I resisted but said that I would visit A&E the following morning if things did not improve.  As the next morning passed, I felt worse and asked my mum to call a cab to take me to A&E at Northwick Park Hospital, where I was taken in to ambulatory care.  Once seen and given Furosemide, a diuretic, to try and get some fluid out of my system as it became clear that I was retaining fluid for a reason not yet known. Upon being weighed, I was asked if the measured weight (131kg) was my regular weight, which I was certain I wasn’t, and about 15-20kg over the weight that I was aware of a few months before.

Although a heart problem was initially thought of as the reason for me feeling unwell, a CT scan showed that I had an enlarged spleen and swollen liver. The first question I was asked was about my use of alcohol and if/when I drank. I am not a big drinker… I might have one big night but then not drink for a month.  I also regularly travelled to parts of the world where alcohol consumption wasn’t permitted, such as parts of the Middle East, and in general was fairly confident in my assertion that alcohol wasn’t the direct cause of my ill health. This wasn’t scientific but based on knowing one’s body, something which I think is really important for anyone reading this and with this condition especially.

Due to my regular travel overseas (including having visited sub-Saharan Africa and South America in the 4 years prior to my admission), a tropical disease related cause was investigated but I had ensured I was fully vaccinated through my employer given I travelled predominantly for work.

After just over a week as an inpatient, I had a further two weeks of testing for a range of conditions, including liver conditions like Wilson’s disease, Hepatitis and Budd-Chiari, all of which were ruled out, as well as a tumour on the liver. I also had an endoscopy to check for oesophageal varices/portal hypertension and eventually I was told I had NASH (non-alcoholic steatohepatitis), a form of NAFLD (nonalcoholic fatty liver disease). I accepted this diagnosis but remained unconvinced. I was told that I needed a liver biopsy to confirm this diagnosis, and after a ‘drain’ procedure, approximately 12-13 litres of ascitic fluid (commonly referred to ascites) was removed the biopsy was undertaken. I was then discharged from Northwick Park Hospital in late November 2016, after 25 days as an inpatient, with a follow-up due a couple of weeks later to discuss the biopsy results – unfortunately the biopsy was inconclusive.

It was just before Christmas 2016 when I developed an infection on my leg: I was subsequently readmitted as an inpatient after visiting A&E at Northwick Park hospital and spent the first ten days of this readmission fighting to clear the infection.  I had a Doppler Ultrasound on New Years’ Eve and the radiologist was of the view that my being unwell wasn’t down to NASH/NAFLD but perhaps something autoimmune. I challenged my hepatology consultant’s diagnosis and was told that they disagreed with the radiologist, at which point my patience was wearing thin as I had nearly 40 days in hospital over two admissions without what I believed was a correct diagnosis. I had been told in December 2016 that a transfer to the specialist liver unit at the Royal Free Hospital had been requested as a transplant was required in their opinion – at this point in early January 2017 I requested for this to be expedited.

At the end of that week in early January 2017, I was transferred to the Royal Free Hospital where within three or four days I was informed that a transplant shouldn’t be necessary and that I had Budd-Chiari. The patient information leaflet on the British Liver Trust website, which I helped review, explains in detail how the condition works but it is very rare as it affects 1 to 4 in every million with females more likely to be affected than males.

I was relieved to finally have a diagnosis so a proper treatment plan could be put in place

A surgical procedure by the name of TIPSS was performed through the jugular vein, with a shunt inserted to allow fluid/blood to flow properly once again.  Prior to TIPSS, I also had to have an EEG, which records brain activity, to ensure that the toxins released from my liver hadn’t spread to my brain. This is because when the liver isn’t functioning properly, toxins can build up in the bloodstream and potentially enter the brain which can lead to hepatic encephalopathy.  After the EEG and TIPSS, and some recovery time, I was discharged after a total of 59 days as an inpatient, over two separate admissions (October 2016 – January 2017).

I continue to see a liver disease consultant and haemotologist at the Royal Free.  I also take anticoagulation medication and have to be careful with my diet due to the warfarin and the interactions it has with various foods and drinks, such as leafy green vegetables.

I decided to change roles within the organisation I worked in (they were supportive of this to which I am grateful) due to the difficulties in having a rare condition and travelling to parts of the world that may not be able to treat such a rare condition. Fatigue comes with liver conditions in general but I am fortunate that I work in a role which allows me to use my skills but plan my work and day in a way that I can contribute as much as I can. I have communicated with others that have Budd-Chiari Syndrome and some never return to work, so feel rather fortunate that after seven months off in total and two months of phased return, I work full time and have been doing so since July 2017.

I enjoy supporting the British Liver Trust by reviewing information, particularly on my condition, which is so rare.  I also engage with people who have Budd-Chiari across the world sharing my experiences and offering advice where I can.

I am a big supporter for the British Liver Trust’s Love Your Liver campaign.  I attend the roadshows when I can and tell people I know to take the online screener.  Due to sharing information on social media and at work, a colleague of mine attended a roadshow event in the city we work in and found the advice gained useful to the extent that changes in lifestyle followed. I am really keen on raising awareness of both Budd-Chiari and liver disease in general, as I don’t feel either gets the attention it merits, and hope that I can continue to support the British Liver Trust in doing this. I am always happy to share my experiences and talk about what I went through as I am aware that people often find it difficult to speak about these types of things, something which can affect mental health negatively.

What I’ve learned from my experience is that no-one knows your body better than you.  If things don’t seem right, get it checked.  Like most people, I put off visiting the doctor but thanks to my family and some wonderful medical staff, I was diagnosed in time to receive life-changing treatment.

I am thankful to the wonderful staff I encountered during my time as an inpatient, especially at the Royal Free, as they made dealing with this lifetime condition a lot easier. Friends, family and colleagues have been very supportive as have the British Liver Trust and I hope that anyone reading this will be able to benefit from the sharing of my story.

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