Kerry had always known that Budd Chiari causes cirrhosis and has a risk of cancer, but being diagnosed with with cancer before she was 40 ‘knocked her sideways’. Thank you for sharing your story, Kerry
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.
