Jayne’s story: “I promised my dad when he died that I would keep telling people about liver disease”

When Jayne first started feeling unwell her GP told her it was all in her head. Eventually she was diagnosed with primary biliary cholangitis and waited nearly two years for a liver transplant. Now an enthusiastic volunteer for the British Liver Trust, Jayne reflects on the physical and emotional impact of waiting for ‘the call’. Thank you for sharing your story, Jayne

In January 2016 I worked for a publisher between Carlisle and London and was always travelling and working. I started feeling really tired and kept going to the doctor and having blood tests to check my thyroid and if I was anaemic. He would say: “It must be all in your head because there’s nothing wrong with you, go away.”

Then one week I was away in London and couldn’t sleep at all in the hotel because of my itching. I started Googling my symptoms, which I know you shouldn’t do, but Google told me that I might have liver disease. So I rang my doctor and he said: “Well, you’re not a doctor, but I’ll do the blood test if it will keep you quiet.”

The results showed there was an issue with my liver function and he said: “You’ve obviously got an alcohol problem”. I said: ‘I don’t think so because I don’t really drink’.

I felt like I was bothering him by wanting to know what was wrong and he also made me feel embarrassed. He made out that I was causing the problem, which really made me worry. It got to the point where I didn’t want to go and see him but I knew I had to.

He did say he would do a test for primary biliary cholangitis (PBC) though and an antimitochondrial antibody test. That came back positive, but then it got worse. You’re supposed to be prescribed ursodeoxycholic acid for PBC but he wouldn’t do that because of the cost to the surgery. They wanted it to be done by the hospital so it didn’t come out of their budget. So I went and sat in the doctor’s surgery for an afternoon and refused to leave until they gave me the prescription.

I was referred to Carlisle hospital, but there’s no hepatologist there only gastroenterologists. Through Googling I found out about LIVErNORTH and that under the NHS you can choose where you’re treated so I got a referral to the Freeman Hospital in Newcastle. They did a biopsy and at the time the PBC was quite aggressive but not too bad.

The only thing they didn’t try was the nasal biliary drain, but there’s a risk of getting pancreatitis with that and then I possibly wouldn’t be allowed a liver transplant

The ursodeoxycholic acid is used to try and halt or slow down the progression of your PBC by decreasing the toxicity of the bile acids that accumulate in your liver, but nothing worked for the itching which was relentless. The only thing they didn’t try was the nasal biliary drain, because the risk of getting pancreatitis could have affected my chance of a transplant.

In June 2021 I was told I needed a transplant assessment. I was really struggling by then and found out in early January 2022 that I’d been accepted onto the transplant list. I was only 42 then and I’d not been able to work for three years.

A house move meant a different GP surgery. My first GP was really helpful, but people move on and the GPs keep changing so they don’t know anything about me, so whenever I rang them they said I had better ring Newcastle. But I wasn’t being accused of being an alcoholic anymore, so that was something.

My condition was being managed OK, but because I was a younger person with PBC I had an aggressive form. Basically my bile ducts were disappearing, and the more I lost the more serious it was going to get, which would make me a higher priority on the transplant list.

Where you are on the list is due to your quality of life, this is called a ‘variant syndrome’ and approximately one in ten organs are offered to people in this category. This is representative of the percentage of people on the list for a variant syndrome, which means my quality of life would only get worse until I got the transplant.

I was told to expect to wait around two years. I appreciate that there are lots of other people waiting and the donor liver has to go to the most suitable person. I didn’t want people feeling sorry for me, just to see me as an ill person.

I had good and bad weeks and sometimes didn’t sleep for months, but I had to pull myself together and just get on with it because it’s harder if you don’t. I tried to contribute as much as I could around the house, but when I didn’t feel well I couldn’t even do that. The only person who really saw exactly how it affected me was my partner, Mark.  I didn’t see a lot of my friends because if ever I make plans I’d end up ill and having to cancel. I used to see my mum a couple of times a week – she was only a few miles away – and waiting for a kidney transplant for four-and-a-half years, so understood what it was like to wait. I would also go out for a walk with a friend sometimes.

Being on the liver transplant list is a lot harder and lonelier than I expected

I’ve always been really independent and just got on with things so being on the transplant list was harder and lonelier than I expected, mainly because I couldn’t go to work. People said I shouldn’t put my life on hold and come off the list and go on holiday, but I didn’t have a choice. I have a rare blood group and what if my call came in that time?

The British Liver Trust do a Zoom call with the Freeman Hospital in Newcastle every Monday and I would go on that if I could. It’s good to chat to people who are in a similar situation and I found that really helpful. I lost my dad to cancer in May 2022. He was diagnosed in late March and wanted to be at home, so I helped to care for him. I stopped going to the group for a bit when I lost him, but eventually returned because speaking to other people really helped me mentally. Thanks to the group I have made some lovely friendships with people who know exactly what it is like to be in this position.

Every so often I go on Radio Cumbria and talk about my transplant journey on the morning show. The station uses it to educate people about liver disease and they’ve had some really positive feedback.  I’ve also spoken to first year medical students at Newcastle University as a liver patient and they said it was a really positive experience for them.

I promised my dad when he died that I would keep telling people about liver disease, PBC, transplantation and my journey, and have every intention of keeping my promise.  I feel that talking about what can be difficult and uncomfortable subjects is a good thing. I don’t want people to feel sorry for me, I just want them to increase awareness.

Waiting for the liver transplant was awful, but they obviously can’t give you a liver that isn’t right

I didn’t get my first call about a potential new liver until March 2023 and by that point I had been on the list for almost 14 months. I had another four calls after that until the transplant finally went ahead. The first time I didn’t feel ready so I was a bit relieved, the next couple of times I’d been at the hospital for 12-16 hours and was preparing to go down to theatre. Coming home each time was difficult because I’d wonder how much longer I would be waiting and couldn’t make any plans. By July I had decompensated cirrhosis, became very jaundiced and couldn’t eat very much, the itching was horrendous and I didn’t have any energy. It was awful, but they obviously can’t give you a liver that isn’t right.

On 22^nd December 2023 I was driving back from my clinic appointment and just 20 minutes from home when I got a call telling me to turn around and come back. I was in theatre at 1am and the next thing I knew it was Christmas Eve and I was in intensive care. I’d been asleep for a day-and-a-half after the transplant because my kidneys didn’t want to work at first, but the team worked their magic, they woke up and have behaved ever since.

Even though it’s amazing that you’ve had the transplant, nothing can prepare you for how awful you feel when you wake up. The nurses got me up and put me in a chair and everything just hurt. I was clinging onto that chair for dear life, but I knew they wouldn’t let me do anything I shouldn’t be doing. I was walking again on Christmas Day and it was really difficult to straighten up, but I knew I had to keep doing it so I could go home.

I couldn’t have been any more fortunate with my recovery because I didn’t have any rejection or infection issues and was home by January 2^nd. I have only been back for check-ups since and even had my first holiday abroad in five years in July 2024. Unfortunately, my mum passed away in 2024 – she didn’t receive a kidney transplant in time, but she still wanted to make a difference, and because of my transplant she decided to become a tissue donor.

I think about my own donor all the time – I wouldn’t have had this chance if it wasn’t for them, but it’s difficult at the start because you’re here and they’re not. I sent a card to their family to explain what a difference the transplant has made to my life and I’ve got an angel Christmas decoration in my donor’s memory. I’ve since been to the Transplant Games and did the donor walk with my partner, along with Louise from the British Liver Trust’s outreach team.

I now feel quite resilient because of everything I went through while I was waiting for the transplant and believe the longer you wait, the more it prepares you for life afterwards. My scar is huge, from my breastbone to my belly button and along either side, but it doesn’t matter. I’m here because of it.

I still take part in the British Liver Trust’s Zoom calls for post-transplant patients, have volunteered at its Love Your Liver Roadshow and signed up to help with other local things the charity does. I think it’s really important to make a difference and hope my story will be somebody else’s guide on how to get through it.

If you’re waiting for a transplant, you have to just hang on in there and believe they have your best interests at heart. Take each day as it comes and celebrate little victories, whatever they may be. Don’t underestimate how strong you actually are and make the most of any support available.

Jayne has also written a poem about her experience on the transplant list, which she has kindly allowed us to share: