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 said 'it's all in your head'. She was put on the liver transplant list in January 2022 and  now regularly speaks on BBC Radio Cumbria about her transplant journey and to raise awareness. 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 and I’m still on the waiting list now. 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 we haven’t tried is 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.  The next job was to try and treat the itching which is relentless in my case, and I’ve been through almost everything that I can, but nothing’s worked. The only thing we haven’t tried is the nasal biliary drain, but there’s a risk of getting pancreatitis with that and then I possibly wouldn’t be allowed to have a transplant, depending on its severity.  So at the moment I'm just sitting tight and hoping I can cope with it until my call comes.

By June 2021 I was told I needed a transplant assessment and had that on December 23. I was really struggling by then and found out in early January that I’d been accepted onto the transplant list. I’ve not been able to work for three years now. I’m only 42 and don’t want to be like this forever, so I’m just trying to wing it at the moment.

I moved house and am with a different surgery now. I did have a doctor there at first who had just qualified and he took the time to find out what was wrong with me and was really helpful. But people move on and the GPs keep changing so they don’t know anything about me.  So whenever I ring them they tell me I had better ring Newcastle. But I don’t get accused of being an alcoholic anymore so that’s something.

My condition is being managed OK, but because I’m a younger person with PBC I’ve got an aggressive form. The doctors can’t definitely say I do have cirrhosis of the liver, but they can’t say I don’t. Basically my bile ducts are disappearing – it’s something called ductopenia, which is specific to PBC and the more I lose the more serious it’s going to get. If that happens I will be 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' 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.  I’m not going to die today, next week or next month which is good, but my quality of life will only get worse until I get the transplant.

I’ve been waiting nine months now and was told to expect to wait around two years. It’s just something I’ve got to do. I appreciate that there are lots of other people waiting and the donor liver has to go to the most suitable person. I don’t want people feeling sorry for me, just to see me as an ill person.

This is a good week for me, last week was too. Until then I hadn’t slept at night for about three months, but you have to try to pull yourself together and just get on with it because it’s harder if you don’t. I try to contribute as much as I can around the house, but when I don’t feel well I can’t even do that. The only person who really sees exactly how this affects me from day to day is my partner, Mark.  I don’t see a lot of my friends because if ever I make plans I end up ill and having to cancel them. I see my mum a couple of times a week – she’s only a few miles away – she’s been waiting for a kidney transplant for four-and-a-half years, so understands what it's like to wait. I 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

It's a lot harder than I expected it to be because I’ve always been really independent and just got on with things. It’s a lot lonelier too but a lot of that is because I can’t go to work. People will say you can’t put your life on hold waiting for the phone to ring and I should come off the list so I can go on holiday, but I don’t have a choice. I have a rare blood group and what if my call came in that time?  Mentally I feel better not going very far and staying on the list.

The British Liver Trust do a Zoom call with the Freeman Hospital in Newcastle every Monday and I go on that if I can. It’s good to chat to people who are in a similar situation and I find that really helpful. I lost my dad to cancer in May. 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 since I’ve been back I find it really helpful, especially how you feel mentally about things by speaking to other people.  This group has meant that 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 say 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 felt it was such a positive experience for them that I am doing it again in January 2023

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.

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

Waiting for the List
We’ve done everything we can; we must now consider the ‘list’,
But first comes a raft of tests, to make sure nothing is missed

A chance for a new start, much removed from the life I now live,
An unbelievable opportunity, something that seems so hard to achieve

My life at the moment, less ups, more downs,
Appointments and letters, waiting around, full of frowns

Imagine no itching, normal sleep and more choice,
Living a life more spontaneous would make me rejoice

The tests are now all done; it’s time to wait,
The results and medical professionals now decide my fate

So time for me to wait and be calm,
No room for panic or alarm

As anticipated, the phone did ring with a decision,
They said ‘Yes’, agreeing it would put me in a better position

A new liver is required; I need to join the transplant list,
But first to meet the surgeon, so no details are missed

We discuss the operation, the benefits and risks,
How long I’m likely to wait, it’s not going to be brisk

Now it’s time to sign the consent, A big step on my journey this does represent

Central to all of this is a selfless donor family,
Amazing human beings, shining examples of humanity

Not sure how I feel, a strange notion of relief,
But conscious when my call comes, it will mean another family’s grief.

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