After Lisa was diagnosed with primary biliary cholangitis (PBC), she had a life-saving liver transplant. Thank you for sharing your story, Lisa.
I'm able to celebrate with my family this Christmas but I’m acutely aware that there will be a family with an empty place at the dinner table.
I’d always known a little about primary biliary cholangitis (PBC) because my Mum was diagnosed with it at an early age. All I really remember was that there was a stigma around liver disease being a condition that was self inflicted, but PBC is an autoimmune liver disease - the immune system attacks the bile ducts of the liver. Mum’s condition has been stable for 20+ years and continues to be managed very well, so as a family we didn’t really think about how serious it could be.
Itching
All that changed when I was also diagnosed with PBC in March 2020. I’d been itching for several months before then, but, as I travelled a lot for work and stayed in lots of hotels, I thought it could have been caused by something else, like bed bugs, laundry detergents or an allergy.
The itching got worse and was starting to affect my sleep and my confidence - I was scratching so much that I bled. It wasn’t until my Mum encouraged me to get some blood tests done (itching can be a symptom of liver disease) that I booked an appointment at the doctors.
Diagnosis
I’ll always remember getting a call from an unknown telephone number later that same day and being told I needed to go to hospital. Initially, they thought it was a gallbladder problem. From there it was a whirlwind of scans, tests and a biopsy. I was diagnosed quickly with an aggressive form of PBC called ductopenia, ‘vanishing bile duct syndrome’.
Unfortunately, my form of the condition wasn’t as easily treatable as Mum’s. The chronic itching got worse and worse. My consultant tried me on various different creams and medications, but I didn’t respond to any treatment. It was around that time, I was told I would eventually need a liver transplant.
As soon as I was diagnosed, I wanted to learn more about my condition. I went online and that’s how I found out about the British Liver Trust. I read other patients’ stories and joined their virtual transplant support group. There’s a good mix of people at different stages of their own journeys who come along to share. It’s been really helpful to hear about all of their experiences. I’ve also made a lot of new friends!
Transplant
I was assessed for transplant and listed in June 2021. Shortly after that, they inserted a nasobiliary drain to help alleviate the symptoms. I kept this in place for nine weeks. Along with the itching, I also had trouble sleeping, surviving on a couple hours maximum a day, and I was losing weight rapidly.
A few short months later, in October, I was told there was a potential liver for me and to get to hospital as soon as possible for the operation. I knew from the British Liver Trust’s transplant support group that sometimes you can have several ‘false calls’ when you’re waiting for a transplant. My husband, Justin, and I were very relaxed and didn’t really think it would go ahead, so when the surgeon arrived with the paperwork ready for me to sign, it was a bit of a shock for us both!
Lisa in theatre.
Initially, I felt guilty about having the transplant. In a strange way I’d become used to my symptoms and I thought there must have been others who needed a new liver more urgently than me. However, after the operation, the surgeons told me that my liver was large and I had ‘extremely severe cholestatis’. My call came at exactly the right time. I hadn’t realised how poorly I really was.
Organ donation
Organ donation has always been really important to me, and it is even more important now that I’ve had my liver transplant. My sister, Stacey, saved a little boy's life by donating bone marrow. I have always been so proud of her. To help the wider cause I now share my journey on Instagram for those in a similar position to me, and for those who have considered registering to be an organ donor, to show exactly what giving the gift of life means to a recipient (@Lisa_liver.transplant.journey).
I think my illness was much harder on my family than it was for me. Thanks to my donor, I am able to celebrate with my family this Christmas but I’m acutely aware that there will be a family with an empty place at the dinner table. I’m planning to dedicate an acre of woodland to them and, when the time is right, I’ll write to their family to let them know, to express how I will be forever grateful and that I’m living my life for them.
Having a transplant has changed my outlook on life. Before I got ill, I always wanted to have the very best things. Now I’m happy with my lot – anything extra is a bonus.
Lisa and her husband, Justin.
