"I'd never heard of primary biliary cholangitis and didn't realise the seriousness of it"

I started having recurring episodes of shivers, fevers and being violently sick, but didn’t go to the doctor because I didn’t think it was serious. While being monitored for another condition, blood tests revealed that my liver numbers were high.

The symptoms picked up pace and I had no energy and my appetite was diminishing. My doctors kept saying my scans were normal until I walked into clinic with a black eye I’d got while passing out. I told them that we needed answers and after another scan I was diagnosed with PBC in around 2014. I’d never heard of it and didn’t realise the seriousness of it.

I was given urso tablets, but it kept progressing and advanced to PSC. I felt very unwell by then and was referred to a dietician because I was losing my muscle mass, but I refused to slow down and carried on working and walking my dogs.

After a transplant assessment in January 2021 my medical team decided I wasn’t ready yet. However, things deteriorated quickly and I was in and out of hospital with infections so was put on the list in October 2021.

I got my call in February 2022 and was the only person listed for the liver. While my medical team were deciding whether it was viable, I had to sit alone, in sight of the medical equipment that I would be attached to. My husband couldn’t be there because of Covid and I was miles away from home and scared. I decided to write a journal so that my journey was written down somewhere, as I didn’t want to forget a single day of what I went through.  When my medical team issued a 10-minute warning that they were on their way, I called my family to say goodbye because I didn’t know whether I would come back.  Nobody that goes through this has a guarantee.

That was hard, as was the transplant. The hallucinations afterwards were horrific, I developed a C-diff infection which was horrendous and also sustained five compound fractures in my back.

Nobody believed my back was bad, and I had another four fractures after I got home. I was only scanned two months later because I couldn’t stand up, but there were too many fractures for surgery by that point, so now it’s only manageable with pain killers. If there had been more help earlier on, maybe they could have stopped the progression, but I try not to dwell on that. I was alive so I thought that I could endure a fair amount of pain.

Four-and-a-half years on from my liver transplant, life continues to be a challenge, but I thank my lucky stars when I wake up every day. My kidneys are still struggling and a weekly injection to help them has become my new normal. I continue to lose weight because my appetite isn’t great, but I’m greedy for life.

As well as triggering osteoporosis, the transplant also my damaged my kidneys to stage 4 at one point, nobody told me this could happen. Patients should be given more information about how life will change post-transplant.

My mood was now so low. I should have been on top of the world, but inside I was screaming. I was worried the transplant would fail and would wake every night at 3am and search the internet for more information. Finally, after crying all the way through a concert, I contacted NHS 111 and they diagnosed me with PTSD. I felt very guilty about that because I’d been given new life.

I’d never tried counselling before, but decided to give it a go and went with an open mind. Thankfully it worked. I do often still go back to those dark places, but I’ve now use the skills the counsellor taught me.

Four-and-a-half years on, life continues to be a challenge, but I thank my lucky stars when I wake up every day. My kidneys are still struggling and a weekly injection to help them has become my new normal. I continue to lose weight because my appetite isn’t great, but I’m greedy for life. I work from home four days a week, volunteer for Liver UK and have enrolled to do therapy dog training with my dog. I’m exhausted by 4pm but I wouldn’t change it for the world.

I knew I would volunteer for Liver UK when I was well enough to support other people with liver disease. I used to host information stands at garden centres, but it became a bit too much for me with my back, so I now help out in the office and do admin work for them at home.

My donor saved my life and I’ll never take that for granted. I’ve written to the donor’s family twice and would have loved that to learn a little bit more about them, but they haven’t replied and I respect that.

When you’re going through the assessment and transplant you have so much support but afterwards it falls by the wayside and it feels very lonely. I wish I’d had someone to talk to pre- and post-transplant because you can only relate to someone who’s been through it as well. What my husband and children went through is different to what I experienced. I believe every liver unit should have a room where patients can meet over a coffee and share their experiences.

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