When Lisa’s health began to decline a year after her liver transplant, she was worried whether a second could possibly be an option. She was therefore relieved when her medical team decided to expedite an assessment for another transplant. Post recovery Lisa has dedicated herself to raising awareness of liver disease and supporting patients in a similar situation to herself. Thank you for sharing your story, Lisa
I was diagnosed with primary biliary cholangitis in March 2020 and had a liver transplant in October 2021. The first year after my transplant was really positive. While I had the usual hurdles such as my kidneys getting a bit of a knocking from the immunosuppressant drugs and the new liver taking a while to settle, generally everything looked good.
However, a liver transplant isn’t a cure for PBC and my liver was never the problem. My immune system saw the bile ducts within it as foreign and attacked them, causing them to close which, in turn, stopped my liver functioning. So my damaged liver was removed and, thanks to my donor, a good liver was put in place but unfortunately I still had the same immune system.
My medical team said they would do their best to stop the PBC from recurring, but it was always a possibility because of its severity the first time around. They said it was unlikely to recur, but if it did, it would be years down the line and you can’t worry about something that won’t necessarily happen.
However, my liver bloods started declining a year after my first transplant, the pain and itching increased and I kept having closures in the bile ducts and repeated stents placed. The transplant unit at Kings and my local hospital were working together on my care and they prescribed additional steroids. A biopsy then showed I had DSA+ (donor specific antibodies) and also that the PBC had returned. It seems my immune system is really feisty and creating antibodies to attack the liver tissue, while the PBC was going for the bile ducts in the liver and closing them down.
Public reaction to jaundice
I was prescribed another immunosuppressant drug and the progress of the PBC was quite slow at first, then it started speeding up. By mid-2024 I was told I would likely need another transplant in two to five years. By October of that year my memory and weight were declining quite rapidly, I was becoming breathless and couldn’t walk too far or too quickly. Jaundice turned me luminous yellow and people were staring. I was laughed at on the train by a couple in their early twenties which made me not want to go out at all. 
Very few people are transplanted in the first place and to go through it a second time and be repeatedly told the risks are so much higher was scary, but I was more worried about whether a second transplant would be an option at all. I knew I was going downhill more quickly than before, but would they give up on me because I was too complex? Would they want to waste another organ if the PBC could come back again? It was a relief when they decided to expedite an assessment for transplant in November and I was listed in early December.
I kept working until December 18th, when I broke up for Christmas leave and had my first call the very next day. Unfortunately, it didn’t go ahead because in a second transplant or a re-do as they call it, the liver has to be gold standard, but someone else got it which was great. Then at 5.05am on Christmas Day I got the second call. There were no ambulances available, so the ambulance service paid for a taxi to get me all the way from Devon to London and in no time at all I was back in surgery.
I’ll continue to raise as much awareness as possible about liver disease and transplants through working alongside the British Liver Trust.
My surgeons and transplant coordinator had earlier warned me that the surgery, my time in ICU and overall recovery would all take longer because my body had already been through that trauma once. That was absolutely true – the pain was also a lot worse and the liver enzymes and liver function also took a lot longer to settle. My kidneys have taken a massive hit due to the Tacrolimus again and are in a steady decline. They’re reluctant to reduce the dose just yet, but may do in the future while increasing another of the immunosuppressants I’m on. I’ve always been unresponsive to ursodeoxycholic acid, the main treatment for PBC, but still take it in case I start responding to it. While I’m not out of the woods, I’m in a much better place than before Christmas. 
When you go through a transplant for the first time you feel very vulnerable, wrap yourself in cotton wool and worry that you’ll burst open at the seams and the new liver will fall out. Because I now know that’s not the case, the second time round I’ve become mobile more quickly and plan to return to work mid year, if possible. I’ll also continue to raise as much awareness as possible about liver disease and transplants through working alongside the British Liver Trust.
I want everyone to know about the Trust’s support groups because they were super-important to me. The pre and post-transplant groups are brilliant, it’s good to hear other patients talk and you feel such elation when someone has been off screen for three or four months and then suddenly they come back and they’ve been transplanted! It’s not just a really positive place for patients, but carers too. Liver disease can be a lot harder, in a different way for our loved ones – even though we’re not in control, they are a level out again and it is troublesome to be in and out of hospital, but our loved ones feel it all as well, its so taxing on them. It must be petrifying, especially if they have to go through a second transplant, because they know what’s coming. The Trust’s patient stories are really useful too.
No shame in liver disease
There are so many assumptions around liver disease, but it doesn’t matter why you have it, nobody should feel ostracised or guilty because of it. I knew PBC was an autoimmune condition, but I still felt a bit of shame when I was diagnosed and wondered if it was somehow my fault. I knew other people would be feeling the same way but couldn’t find anyone on social media with liver disease of my age, so I decided to share my journey online. I wanted to help us all feel less alone and know that however people’s liver disease comes about, there’s no shame in it. I also wanted to educate the public about liver disease generally. I was itching for a good 18 months before I went to the doctor. Would we have been able to slow the progression down, had I known that itch is a symptom of autoimmune liver disease? I talk about the impact Tacrolimus can have on the kidneys too. A lot of people only find this out after their transplant, when they’ve just had one organ switched out and suddenly another one is declining. I want all these challenges to be less of a shock for transplant patients.
It’s all about support and through this a group of us has formed – we call ourselves the Liver Ladies. We’ve all been through the same thing, have got to know each other online and have been on a weekend away together, with another booked for later 2025. We talked, walked, laughed and cooked together and shared our stories and it was wonderful to all be sat together in person. 
I feel that my first donor’s legacy lives on through me and am grateful to both of my donors, so it’s also my mission to ensure people register to be an organ donor and that their loved ones know their wishes, which will in turn save lives. It’s all just built and built until I was very kindly nominated by my husband for Lorraine’s Woman of the Year Award in 2023 and somehow I won it! It was such a shock but also an opportunity to reach another audience outside social media and talk about organ donation and the British Liver Trust.
It was also great to be invited back on Lorraine after my second transplant – we were on for six minutes and of course we talked about the British Liver Trust again!
