I’d never heard of primary biliary cholangitis (PBC) when I was diagnosed with it in 2000. I’d been experiencing terrible itching and when I went to see my GP, he said I also looked quite yellow. He suggested a blood test, after which I was referred to my local hospital and the following week I saw a gastroenterologist. The diagnosis was confirmed after a biopsy.
The gastroenterologist gave me a few leaflets, said I would be monitored and would probably need a transplant at some point in the future. I was referred to a hospital with a specialist liver unit, put under the care of a hepatologist and prescribed urso. It slowed the progression of the illness, but didn’t help with the itching – it was everywhere and felt like insects crawling over my skin.
Over the years I had regular tests, but wasn’t feeling great even though my liver was still functioning quite well. The PBC went from stage 3 to stage 4 over a period of three years. I had a lot of stomach upsets and the tiredness became really bad – it was like walking through custard. I’d reduced my work hours, but there came a point where I had to stop working completely.
Liver functioning well
By 2016 FibroScan results were showing I had cirrhosis. I’d been having gall bladder problems and when it was removed my liver started bleeding quite badly. I was in hospital for quite a few days. In February 2019 I had a terrible evening bringing up and passing blood. It was a variceal bleed and when they did the banding they found more varices. I spent time in ICU because I was losing a lot of blood and they couldn’t control it. I had more and more endoscopies, my fibroscans were in the 20s and I felt dreadful, but my consultant said my liver was still functioning quite well.
In June 2019 two days into a holiday, I got an email from my consultant saying AFP markers had been detected in my blood. I asked what AFP markers were and he said they could mean tumours or growths. It was a shock to be emailed this, I really think I should have been told in person.
My consultant arranged a CT scan but I couldn’t get the results as he was on annual leave. I ended up speaking to a registrar over the phone who said they’d found a shadow and would arrange an MRI. That didn’t happen so I had to do it myself and after six weeks my family and I were very anxious as I still hadn’t had the results. I phoned the British Liver Trust’s Nurse-led Helpline who confirmed I shouldn’t have to wait that long.
The British Liver Trust’s nurse-led helpline is so good and reassuring
My husband eventually rang the consultant’s secretary and I got a phone call that evening. My case was supposed to have gone to an MDT meeting, but had been missed off it so I had to wait another week. It wasn’t satisfactory at all. My consultant said I had hepatocellular cancer (HCC) – there were two tumours, but because one was too near my lung they couldn’t operate, so the only treatment was a transplant. Other treatments wouldn’t work because my liver was very fragile.
I hadn’t realised that PBC could lead to HCC so it came as a shock. I called the British Liver Trust’s Nurse led-helpline and they explained what HCC was and what the markers meant –speaking one-to-one with a nurse was better than ten minutes in a consulting room. I called the helpline again when I was on the transplant waiting list and was feeling quite anxious. They were very reassuring, the British Liver Trust is just so good.
Then everything went pretty quickly, I saw a liver oncologist, had an embolisation process to stop the tumours enlarging and was also drained of acetic fluid a few weeks later. I passed the transplant assessment and was put on the list. Two weeks later I got a call, but the liver wasn’t suitable, neither was the second five days later, but the third liver was a match, just 38 days after being on the list. I had the transplant in December 2019 and was home 10 days later. Following the transplant, a third tumour was discovered on my old liver.
Feeling guilty
When the pandemic restrictions started in 2020 I wasn’t allowed to go to clinic on public transport and my medication was delivered to me by post. In a way lockdown allowed me to recover, but as things began to open up again I felt very depressed. I didn’t feel I could go out and wondered if it had been worth having the transplant. I felt guilty too and that the liver should have gone to somebody more worthy. My consultant asked if I wanted to speak with someone – and the woman I saw was really good and helped a lot, but I still feel like that now and again.
Physically, I’ve been doing fine – my liver function tests are spot on and my medication is adjusted as and when is necessary. I came off the steroids very quickly and am just on the usual immunosuppressant drugs and that dose has been lowered. However, I’m wondering if the drugs are causing pain in my ankles and shins, it’s rare but it can happen. It started about six months after my transplant which seems a coincidence. There are days when it’s really painful, especially when the weather’s hot or if I do a lot of walking. It wakes me up at night so I have to keep taking paracetamol which I don’t want to do because it could damage my liver. I’ve had an MRI and electrical tests which say there’s nothing mechanically wrong with my legs. I don’t want to live in pain for the rest of my life – I went through my transplant to feel well.
When I learned the British Liver Trust was inviting HCC patients to speak about stigma at a conference for healthcare professionals I volunteered to take part. The organisation is brilliant and I wanted to give something back and sharing my experiences felt so worthwhile.
I told the conference about encountering stigma in 2001 at my first-ever endoscopy when a nurse said to me: “You’ve brought this on yourself”. At the time I didn’t give it a lot of thought because I was partly sedated and worried about the procedure. The next time was when I was on antibiotics and went to the dentist. She made assumptions that I must be an alcoholic and told me I shouldn’t be drinking while taking them. She’d probably never even heard of PBC. I was angry, but again didn’t say anything. There are many reasons why you get liver disease – not everyone drinks alcohol or takes drugs.
To anyone in a similar situation to me, I would definitely say contact the British Liver Trust because they provide so much help and information and are really compassionate about it. And always ask lots of questions.