Katie is sharing her story to help other people in a similar situation and spread awareness of Primary Sclerosing Cholangitis (PSC), the diagnosis process and liver transplants. People ask her lots of questions about it which she’s always keen to answer, saying that using her voice to inform and help others is one thing she can do. Thank you, Katie
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.
