There was always a chance that Lisa’s primary biliary cholangitis would recur, but her consultant said they wouldn’t expect to see anything for at least five years. So it was a shock when Lisa’s health began declining rapidly just a year post-transplant and we were told she was likely to need another transplant. Without being too melodramatic, I thought: “Is she going to make it?”

Lisa felt a lot of guilt because the amazing gift she’d been given by her donor and their family was failing for reasons she couldn’t control and we were worried a clinician could decide she was too much of a risk for a second transplant. When we were suddenly told in November 2024 that she would be listed, I thought: “Oh, wow!” but it can sometimes take a number of years to be lucky enough to get another donor, did we have that time? But at 5am on Christmas Day the phone rang and Lisa said: “Oh my god, it’s Kings!” and we were on our way to London.

The surgeons had said there could be more complications with a second transplant because of the scar tissue and the close proximity to the previous one. I’m rarely pessimistic, but there’s always that dark little shadow in your soul that thinks something could go wrong. Lisa and I had to have conversations about what to do if the worst happened twice within a couple of years. It’s pretty brutal.

Pacing around and just waiting while Lisa was operated on was emotionally exhausting. While I was obviously keeping in touch with family I just wanted to be on my own, but Lisa has so many people invested in her story and they all wanted to know how she was getting on. While the level of support was amazing, answering messages left, right and centre was draining.

Strong and positive

As a carer I had thought things would be easier second time around, but it was more of a struggle emotionally because I knew what Lisa was going through and the complications that could arise. However, she is so incredibly strong, positive and proactive even when things go wrong as they often do, so if I was anything but strong too, it would be kind of defeatist.

For the first six or seven weeks after the transplant Lisa had an ongoing infection which prevented her liver from kicking in properly, but then all of a sudden it started working and she’s been very stable for weeks now. However, because she’s been on extremely strong medication for five years, she’s at stage one of acute kidney injury. It’s being monitored and we hope it stays at that stage – otherwise we could be looking at kidney failure and transplantation. Lisa knows there’s a chance of that, but we’ll face that if it comes and with the same strength and stoicism that she has faced everything else.

Lisa has become so knowledgeable about liver conditions and all she’s done since her diagnosis is help others. She’s made so many connections across the world and her blog on what to take to hospital has resulted in people with autism and anxiety messaging her to say how helpful it’s been. It’s cathartic thing for her and helps her feel she’s not just sitting there waiting to see how she is week on week.

Lisa was incredibly jaundiced before the second liver transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing.

There’s still a lot of stigma and we’re grateful to the British Liver Trust for their work in educating people. Lisa was incredibly jaundiced before the second transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing. Most of the time I chose to ignore it but sometimes it got so obvious that I would look them in the eye as if to say: “Come on, think about this!”

Often when I was at work, I would turn myself inside out wondering whether Lisa was experiencing that with no support and towards the latter stages she avoided going out in public altogether because she got so many stares. Out of the whole journey they were probably the most difficult times. Seeing that directed at someone you love is cruel and upsetting, especially when you know what they are going through.

It’s not necessarily because people have made bad choices, they’re just not educated. I’m sure some of the kids who took the photos shared them with their friends and I hope somewhere along the line someone said to them: “My auntie has a disease and that’s why that person is that colour”. Educate yourself rather than judge.

We’re both grateful to the British Liver Trust for everything they do, not just for us but for everybody with different liver conditions and all their varying degrees of negative and positive outcomes. We were therefore humbled when the organisation asked us to become their ambassadors. It’s given us an official way to get the word out about early diagnosis, Love your Liver and connecting more people to the donor register. If you or a loved one are diagnosed with a liver condition, I would always advocate for the British Liver Trust. The information and support on their website is truly remarkable, including the Living With pages, events and publications. We invested heavily in them when we were educating ourselves on Lisa’s condition.  There are also many people like Lisa who give up their time to tell their stories and I think people can find a lot of solace in seeing where they are physically and emotionally afterwards.

Support from family and friends

Because Lisa has been through so much, I decided to nominate her for Lorraine’s Woman of the Year in 2023. While Lisa knew I’d nominated her, she didn’t know she was in the top three, so when we were invited to the studio to meet Lorraine, I told her I’d won a tour of TV studios in a competition. During that ‘tour’ Lisa ended up on the set and was interviewed by Lorraine! It was a bit of a fairy-tale moment and I was blown away when the public voted for Lisa and she won the title.

Even though we have a lot of support from family and friends, it’s still been a difficult year. I also lost my mother and stepfather within seven months of each other, so you think, crikey, what’s next? But you either fold or you fight and Lisa and I always try to stay as positive as we can.

As a carer being present and educating myself on everything Lisa’s having to do, like what drugs she’s on, what levels they are is very important. It would be very easy for me to let her deal with it all, but being there for her has also helped me. We’re in a great place now and long may that continue. Lisa will be gradually phasing back into her job which she absolutely loves – and we’ll just keep plugging away.

Women are totally the stronger sex, I’ve no doubt that that’s the case and Lisa’s extremely strong. That’s why I’m able to cope so well.

Read Lisa’s story

The post Justin’s story: “As a carer I had thought things would be easier with a second transplant, but it was more of a struggle emotionally” appeared first on British Liver Trust.

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 18^th, 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!

Lisa’s first transplant story

Read Justin’s story

The post Lisa’s story: “A liver transplant isn’t a cure for PBC and my liver was never the problem” appeared first on British Liver Trust.

I  was 19 when I first found out I had primary biliary cholangitis (PBC) ; a diagnosis I’d never even heard of. It began by accident in spring 2021. I’d gone to a doctor about long-COVID symptoms and they ran a full autoimmune screen. The only thing that came back was a positive AMA autoantibody. From there I was referred to a hepatologist, but because PBC is very rare in someone my age and my bloods didn’t look too bad at the time, I spent the next year having routine monitoring while life carried on.

During that year I was also diagnosed with POTS, which shares symptoms (especially fatigue) so the signs of PBC weren’t obvious. In April 2022 my liver blood tests changed and I was referred to the liver unit in Belfast. They felt I met enough criteria for PBC and started me on ursodeoxycholic acid straight away. To be sure, my hepatologist organised a liver biopsy in July 2022; the biopsy confirmed PBC with evidence of fibrosis, and I continued treatment.

Since diagnosis I’ve had autoimmune blood tests, fibroscans, two biopsies, ongoing blood monitoring and trials of medications. I tried obeticholic acid but had to stop because it worsened itching. I also experienced a drug-induced liver injury from another medication which required hospital care ; a frightening episode that underlined how fragile and complicated treatment can be.

Being so young with a disease that most people associate with older adults has been one of the hardest parts. I was at university in England while my family home is in Northern Ireland, so I was under multiple medical teams and often felt lost between systems. Miscommunication (or no communication) between services meant I was regularly the one chasing results or asking for updates. There were times I felt gaslit or dismissed (as if my symptoms were exaggerations or just stress) and other times I received excellent care from nurses and doctors who listened.

Symptoms are more than a list: fatigue for me is a wave of exhaustion that sleep won’t fix. In my first year at university I struggled to pace myself; I missed the last term because there were days I couldn’t get out of bed and my family had to physically help me. Learning to pace (even working with a pacing coach) changed how I managed study and social life. It wasn’t the typical student experience, but I did still make friends and have good times, which I’m grateful for.

Itch has been another humiliating symptom. At my worst I was openly scratching in public and felt people staring or recoiling, assuming something contagious. I had to reassure strangers that it wasn’t scabies or chicken pox — and the stigma ran deeper: because I’m young, some people assumed my liver disease had something to do with alcohol.

Let me be clear: PBC is an autoimmune disease and has nothing to do with alcohol. Being wrongly judged like that added another layer of isolation.

I’m lucky to have an incredibly supportive mother who has fought for me when I didn’t have the strength to push. There have been times that persistence (from both of us) was the only thing that got me access to the tests or care I needed. Today my bloods are the best they’ve been in two years, and a year ago I was jaundiced; now there’s no trace of it. That progress means everything.

These last four years have been among the most challenging (and also some of the most formative) of my life. Living with chronic illness has forced me to value my energy, reassess friendships, and learn to celebrate the good days. I’m still processing everything, but I’ve grown more confident, more in touch with my body, and more certain of my own voice. I want to use that voice now.

I’ve just finished university, and I’m ready to get involved: joining online platforms, supporting peer groups, and raising awareness about PBC, especially among young people.

If you’re around my age and living with PBC, or if you felt judged or isolated when you were diagnosed, I’d love to connect.  Finding others who understand has made a huge difference to me – it’s a reminder that this condition isn’t “all in your head,” and you’re not alone.

If my story helps even one person feel seen, less ashamed, or more likely to reach out, that would mean everything.

The post Taise’s story: “Living with chronic illness has forced me to value my energy, reassess friendships, and learn to celebrate the good days.” appeared first on British Liver Trust.

I’d never heard of primary biliary cholangitis (PBC) when I was diagnosed with it in 2000. I’d been experiencing terrible itching and when I went to see my GP, he said I also looked quite yellow. He suggested a blood test, after which I was referred to my local hospital and the following week I saw a gastroenterologist. The diagnosis was confirmed after a biopsy.

The gastroenterologist gave me a few leaflets, said I would be monitored and would probably need a transplant at some point in the future. I was referred to a hospital with a specialist liver unit, put under the care of a hepatologist and prescribed urso. It slowed the progression of the illness, but didn’t help with the itching – it was everywhere and felt like insects crawling over my skin.

Over the years I had regular tests, but wasn’t feeling great even though my liver was still functioning quite well. The PBC went from stage 3 to stage 4 over a period of three years. I had a lot of stomach upsets and the tiredness became really bad – it was like walking through custard. I’d reduced my work hours, but there came a point where I had to stop working completely.

Liver functioning well

By 2016 FibroScan results were showing I had cirrhosis. I’d been having gall bladder problems and when it was removed my liver started bleeding quite badly. I was in hospital for quite a few days. In February 2019 I had a terrible evening bringing up and passing blood. It was a variceal bleed and when they did the banding they found more varices. I spent time in ICU because I was losing a lot of blood and they couldn’t control it. I had more and more endoscopies, my fibroscans were in the 20s and I felt dreadful, but my consultant said my liver was still functioning quite well.

In June 2019 two days into a holiday, I got an email from my consultant saying AFP markers had been detected in my blood. I asked what AFP markers were and he said they could mean tumours or growths. It was a shock to be emailed this, I really think I should have been told in person.

My consultant arranged a CT scan but I couldn’t get the results as he was on annual leave. I ended up speaking to a registrar over the phone who said they’d found a shadow and would arrange an MRI. That didn’t happen so I had to do it myself and after six weeks my family and I were very anxious as I still hadn’t had the results. I phoned the British Liver Trust’s Nurse-led Helpline who confirmed I shouldn’t have to wait that long.

The British Liver Trust’s nurse-led helpline is so good and reassuring

My husband eventually rang the consultant’s secretary and I got a phone call that evening. My case was supposed to have gone to an MDT meeting, but had been missed off it so I had to wait another week. It wasn’t satisfactory at all. My consultant said I had hepatocellular cancer (HCC) – there were two tumours, but because one was too near my lung they couldn’t operate, so the only treatment was a transplant. Other treatments wouldn’t work because my liver was very fragile.

I hadn’t realised that PBC could lead to HCC so it came as a shock. I called the British Liver Trust’s Nurse led-helpline and they explained what HCC was and what the markers meant –speaking one-to-one with a nurse was better than ten minutes in a consulting room. I called the helpline again when I was on the transplant waiting list and was feeling quite anxious. They were very reassuring, the British Liver Trust is just so good.

Then everything went pretty quickly, I saw a liver oncologist, had an embolisation process to stop the tumours enlarging and was also drained of acetic fluid a few weeks later. I passed the transplant assessment and was put on the list. Two weeks later I got a call, but the liver wasn’t suitable, neither was the second five days later, but the third liver was a match, just 38 days after being on the list. I had the transplant in December 2019 and was home 10 days later. Following the transplant, a third tumour was discovered on my old liver.

Feeling guilty

When the pandemic restrictions started in 2020 I wasn’t allowed to go to clinic on public transport and my medication was delivered to me by post. In a way lockdown allowed me to recover, but as things began to open up again I felt very depressed. I didn’t feel I could go out and wondered if it had been worth having the transplant. I felt guilty too and that the liver should have gone to somebody more worthy. My consultant asked if I wanted to speak with someone – and the woman I saw was really good and helped a lot, but I still feel like that now and again.

Physically, I’ve been doing fine – my liver function tests are spot on and my medication is adjusted as and when is necessary. I came off the steroids very quickly and am just on the usual immunosuppressant drugs and that dose has been lowered. However, I’m wondering if the drugs are causing pain in my ankles and shins, it’s rare but it can happen. It started about six months after my transplant which seems a coincidence. There are days when it’s really painful, especially when the weather’s hot or if I do a lot of walking. It wakes me up at night so I have to keep taking paracetamol which I don’t want to do because it could damage my liver. I’ve had an MRI and electrical tests which say there’s nothing mechanically wrong with my legs. I don’t want to live in pain for the rest of my life – I went through my transplant to feel well.

When I learned the British Liver Trust was inviting HCC patients to speak about stigma at a conference for healthcare professionals I volunteered to take part. The organisation is brilliant and I wanted to give something back and sharing my experiences felt so worthwhile.

I told the conference about encountering stigma in 2001 at my first-ever endoscopy when a nurse said to me: “You’ve brought this on yourself”. At the time I didn’t give it a lot of thought because I was partly sedated and worried about the procedure. The next time was when I was on antibiotics and went to the dentist. She made assumptions that I must be an alcoholic and told me I shouldn’t be drinking while taking them. She’d probably never even heard of PBC. I was angry, but again didn’t say anything. There are many reasons why you get liver disease – not everyone drinks alcohol or takes drugs.

To anyone in a similar situation to me, I would definitely say contact the British Liver Trust because they provide so much help and information and are really compassionate about it. And always ask lots of questions.

The post Diane’s story: “I hadn’t realised that primary biliary cholangitis could lead to hepatocellular cancer, so the diagnosis came as a shock” appeared first on British Liver Trust.

When Janet was placed on the liver transplant list in 1996, she held on to the fact that the longest post-transplant survival at that time was 15 years. In fact, her donor’s generous gift gave her 27 more years with her family. Now Janet’s daughter, Rachael, shares her mum’s experience of living with a long-term liver condition. Thank you, Rachael 

Mum was the heart of our family and lived her whole life for us and her faith. Her death in September 2024 has left such a huge gap, and we’re not just grieving for Mum, but also for the donor liver she received in 1997. The generosity of her donor and their family gave us 27 more years with her that we otherwise wouldn’t have had.

Mum first started feeling a bit unwell in early 1995 and went backwards and forwards to the doctor who put it down to the menopause. Then in the summer of 1995 she developed a distended stomach and became jaundiced. Blood tests confirmed cirrhosis and the GP asked if she drank, but Mum had never been a drinker.  She was now quickly referred to the Queen Elizabeth Hospital in Birmingham for more tests and her doctors thought it was either primary biliary cholangitis (PBC) or primary sclerosing cholangitis (PSC). Mum was placed on the transplant list in 1996.

Liver transplant

At this point PBC had only just been recognised by the medical profession as a disease, so Mum wasn’t on a lot of medication. She was in and out of hospital with oesophageal bleeds, had lost a lot of weight, was jaundiced and itching was a big issue, but she battled on. Her faith meant a great deal to her, so she prayed a lot and threw herself into cooking, baking, gardening, and fundraising. Because she had to have a low-salt diet she created lots of no-salt recipes that impressed the doctors and she teamed up with the dietitian to produce a recipe book for liver disease patients.

Just three months after being put on the transplant list Mum got the call. They didn’t say they had a liver but asked what her health was like and told her to make her way over to Birmingham. She was taken to theatre the following morning and the transplant took eight hours to complete. Mum came out at around teatime and was put on a ventilator in intensive care. After spending the night there, they woke Mum, got her out of bed and she walked to the high dependency unit.

The morning after the transplant the first thing we noticed was that Mum was a lovely pink colour, it was wonderful to see because she’d been so yellow. She was in hospital for just ten nights in total and had some rejection issues about six months later which led to her steroid dose being adjusted. Otherwise, she had a really good recovery. Mum had been terrified of the transplant but was also overjoyed to get it because she’d been given a new chance. At that point the longest transplant survivor was 15 years and she was holding onto that.

Mum knew there was a chance that the primary biliary cholangitis could return

It was only after Mum’s transplant that PBC was officially diagnosed and around 10-15 years later it came back in the new liver. Mum knew this could be a possibility and she also developed other autoimmune conditions such as coeliac disease and Sjögren’s syndrome. Doctors prescribed ursodeoxycholic acid to slow down the progress of the PBC – she took it for quite a few years and was more or less all right, but gradually things started getting worse. In 2021 she developed fluid retention, her kidneys started failing and oesophageal varices were discovered during routine screening. She was given more medication, but another transplant was out of the question because she was now 80 years old.

Again, Mum refused to let her illness stop her and she continued gardening, cooking and baking until the start of 2024 when her health really started to deteriorate. We noticed she was getting more tired and had no energy – where she’d normally pushed herself, she was now sitting more.

Things now became very difficult for Mum. From May she was in and out of hospital with complications and suffered terribly with severe oedema in her legs and ascites which she had drained. She was fortunate not to have any bleeding from the varices but the hepatic encephalopathy was the worst. It started with slight memory problems, then progressed to tremors, slurred speech and unsteadiness on her feet which resulted in her falling and fracturing her hip. She had her hip fixed but never walked again. In spite of everything Mum was so brave and never complained.

Grateful to donor

Mum was admitted to a hospice on August 16^th 2024 and we spent her final four weeks there with her before she passed away. She had said her biggest aim was to get to her 80th birthday and celebrate her and dad’s 60th wedding anniversary. Both she and my dad were 80 in 2023 and they had a big celebration for that, and spent their diamond wedding anniversary together in the hospice eleven days before she passed away.  So she managed to achieve both.

I’m so proud of my mum and love and miss her every single day. We’re so grateful for the extra time the donor gave her. After the transplant, Mum had written to the donor’s family to thank them and would also send a card every year on the transplant anniversary. She hoped they might reply, they never did, but we understood and respected that. At Mum’s funeral we mourned the donor liver as well as her.

I’m a healthcare professional and work in theatres so I’ve seen both sides of the transplant process.  Around 10 years after Mum’s transplant I was involved in an organ retrieval. It’s obviously awful for the family, but being in the operating theatre and seeing the different teams arrive for the organs and the transplant coordinator saying the names of the people they will go to, makes you realise just how important organ donation is.

I know Mum would love me sharing this story because what her donor and their family gave us is priceless. They kept her alive for 27 more years and enabled her to meet my two children. Words cannot express the importance of that.

The post Rachael’s story: “We’re so grateful for the extra time that Mum’s donor gave her” appeared first on British Liver Trust.

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:

The post Jayne’s story: “I promised my dad when he died that I would keep telling people about liver disease” appeared first on British Liver Trust.

I was diagnosed with Primary Biliary Cholangitis in 2007 and didn’t experience any symptoms before that or over the next 17 years.  After being put on medication for the PBC my bloods were always normal. I had an annual screening for cancer as I learnt that with my condition I was predisposed to liver tumours. I also went for liver scans annually at my local hospital in Stoke on Trent and was clear until 2022 where one, then two, tumours were found.

I was told a liver transplant was the only route for me which was totally shocking as I felt normal. I underwent chemotherapy with a procedure called TACE to bridge some time while on the waiting list for a transplant and again had little symptoms post chemo (I was lucky, I guess).

I then received THE call early in 2023, four months after going on the transplant list and with a few previous false alarms I went for surgery to the Queen Elizabeth hospital in Birmingham. My donor was a person who had suddenly died and with my previous profession as an intensive care physiotherapist I knew such donors are like gold dust. I questioned the surgeon doing my operation “How come I’m getting this liver?” and the answer was astonishing. He/she said: “Your liver is recycled”. So I was receiving an organ from someone who had been a transplant patient.

Quoting my father as to whether to accept this organ was an ‘an enigma wrapped up in a dilemma’.

What were the added risks? What of the increase in antibodies as this liver had travelled through two other people before coming to me? Have I now three armies of antibodies fighting this organ? No-one could answer the questions easily as available data is scarce as only 10 other people world-wide had undergone this surgery.

Liver tumours

The medical staff were reassuring in explaining that all eventualities could be treated with medication and they would be super-vigilant in my case. My family and I discussed the situation and we all came to the conclusion that I was super-fit for surgery and if there were to be any problems, I was well equipped to deal with them. So we agreed to go ahead. Alarmingly another tumour was found during the operation – my liver was a ‘tumour-making machine’ and so I would have deteriorated very quickly without the transplant so the timing was perfect.

I am reluctant to know how the other 10 patients are getting along health wise. It’s such a low number of case studies and statistically I’m not sure if they are in my favour.

Surgery went extremely well, hospitalisation didn’t bother me as I am so familiar with the environment including ICU. I was totally at ease with the monitors, procedures and if I, as a chest physiotherapist, could not manage my own physio…simply no excuse.  So I self-administered all the physical therapy and, quoting my children, ‘You smashed it, Mum’.

I’m not saying it has been an easy journey, the anti-rejection meds have their own risks and this is the price you pay to stay alive.

I have been readmitted with gastro-enteritis, self-inflicted with food poisoning we think, from my French husband’s cooking! There was another admission in August, scarily, I was not unwell at all, but my bloods were not right. A biopsy revealed severe rejection which was treated very successfully with Prednisolone. What a way to spend my 66th birthday! More recently I had a potential problem with kennel cough, but that is another story.

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs

Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs and the process needed to get there. Through working in ICU I have treated heart, lung and kidney transplants (recipients?) and helped ‘keep alive’ people who are potential organ donors by doing chest physiotherapy.

I have since met many organ recipients when I attended the British Transplant Games in Coventry in 2023 as a spectator. I also went to a golfing event at the Warwickshire golf club with my son, where I had the pleasure of meeting like-minded folk all with amazing stories to tell. I have set up a Golfing Society based in the Midlands called the Mulligans – a term used in golf to give you a second chance. We had our inaugural Golf Day in May this year and attendees consisted of transplantees, people who had donated organs as a live donor but also family members who had donated their loved one’s organs when they died. It was all very levelling and not a dry eye in sight. There has been a lot of interest nationally and I would like to set up golf societies to represent every corner of the UK.

The anniversary of my operation rendered me very emotional as I reflected on the families mourning the anniversary of the death of their loved ones, but as one of the consultants said: ‘Remember they volunteered to donate their organs’.

I plan also to rekindle my love for squash as I am a regular racquet ball player and maybe enter the Transplant Games in the over-60s category, paracetamol on hand!

Organ donor wishes

In summary, I would say the case of all people who have received organs there is no easy way to show your appreciation because of the trauma other people have endured. The least I can do is help to spread the word as I also know how many people, young and old die whilst waiting on the transplant list.

I’ve also learnt that despite the National Mandate where we are all donors unless we opt out that families can still reverse that policy simply because they are unaware of what their loved ones would have wanted. The message here is: tell your family your wishes and spare them the heartache of making that decision.

I have been lucky from the start and I will never undervalue the team, the process and the outcome.

On each anniversary of my transplant I will be happy but equally sensitive to the two families who are remembering their loved one. I was widowed 33 years ago and July 21^st is still a poignant day for me.

But now, hopefully, I have a long life ahead and a duty to perform.

The post Mandy’s story: “I was receiving an organ from someone who had themselves been a transplant patient. What were the risks?”  appeared first on British Liver Trust.

I was put on hormone replacement therapy (HRT) in 2012 and started itching all over. My GP took me off it, but the itch continued, so he referred me to hepatology where blood tests revealed my LFT levels were deranged. After another scan, I was diagnosed with Primary Biliary Cholangitis (PBC) and my world fell apart.

Not a lot was known about PBC then and there is no cure. I’d had no symptoms before and my consultant didn’t know how long I’d had it but thought the HRT had triggered the itching. I didn’t understand where it had come from and thought cirrhosis meant there was no hope. I asked him if I was going to die and he said really clearly and firmly: “No”.

I was prescribed Ursodeoxycholic Acid (urso) which would slow the progression and would be monitored through regular scans and MRIs.

After a second opinion confirmed the diagnosis, I felt more reassured. I thought I needed to change my diet, like drinking skimmed milk instead of semi skimmed, but the second consultant said: “Just go out and live your life and don’t eat anything too fatty”.

Urso worked really well for around 10 years – scans showed that while there was cirrhosis and my liver was quite lumpy, there was no deterioration.

I’d never been a big drinker and had stopped completely a year before the diagnosis. When we retired, we created new friends whom we would meet in a pub. I told them I had an autoimmune condition and chose not to drink to not put my liver under any other pressure. They’d say: “But surely one or two every now and again won’t hurt” or give me a sideways glance when I mentioned cirrhosis. I’d reply: “No! You need to listen to what I’m telling you. Liver disease is not all drink/drugs related.” That stigma is still there, but I’ve become a lot stronger.

I was shocked when my consultant told me I needed a liver transplant. It had never been mentioned before.

By 2020 my LFTs were out of range, not by a great amount but enough to concern my consultant, and scans showed some deterioration. He contacted Nottingham Hospital where the multidisciplinary team said I needed a liver transplant. I was on my own at home when my consultant rang to tell me. I was shocked – there had never been any mention of a transplant before and, again, I thought I was going to die. Then I thought no – it would be tough, but I would deal with each stage as I came to it.

I got onto the transplant list at Addenbrooks Hospital in June 2021 and stayed on it for about 18 months. It was hard to get my head round at first – always remembering to take my phone everywhere and have a bag packed. I felt quite constricted and thought I couldn’t go anywhere, but the transplant coordinator said: “Just let us know where you’re going and be within two hours of Addenbrooks”. I snapped out of it then, realising I’ve only got one life to live.

It became more difficult towards the end though. For the last eight to 10 months I suffered from hepatic encephalopathy (HE). Some days I was fine, but on others I was nasty and aggressive to my husband and I couldn’t understand why. I would also ring him at work several times a day to ask what day it was and leave taps running and the cooker on. Sometimes I didn’t know who my daughter was. Addenbrooks recommended I stop driving for my own safety, which was very restrictive. As my liver deteriorated further, I became really fatigued and struggled to walk into the garden, but had to stay physically active to aid my recovery. In the last few weeks I struggled to do anything and could only crawl up the stairs. It had a big impact on my mental wellbeing and I spent a lot of time in tears.

I had my first transplant call on December 23 2022, but it wasn’t viable. The second was on 26 December and it went ahead on the 27^th. The transplant went really well and the jaundice and HE just went, like someone had pressed a switch. I was home around ten days later and my recovery went really well too. Within the first couple of months I had to have a stent put in which was fine. My platelets then plummeted, which was due to another autoimmune condition, but stabilised with medication. I now see my team every three months and my consultant said: “You just power through – you’re resilient”. Well, who else is going to do that for me? I’m just enjoying my new life.

I absolutely love The British Liver Trust’s pre and post-transplant support groups

My husband and I had a weekend away a few months after the transplant and are now away left, right and centre. It felt like we walked the whole Cornish coastline while on holiday in September 2023 and I felt so, so good. It’s all thanks to my donor – it’s what they would have wanted and I won’t let them down. The new liver gave me my life back and allowed me to meet my newest granddaughter, but I still find it very surreal. While I was so happy to have Christmas with my family, the donor was missing from their family’s Christmas table, and I was very emotional on the transplant anniversary. Until you need a transplant, I don’t think you really understand what donors do and what it means to the recipient and their family.

I found out about the British Liver Trust’s pre- and post-transplant support groups from another patient. I absolutely love them – they’re so informative. When you’re pre-transplant they help you realise you’re not the only one, other members understand what you’re going through and know exactly how you’re feeling. It was lovely to go back when I was post-transplant and share that news with my ‘liver family’ too.

If you’re waiting for a transplant, live your life, go away for weekends and do what want to on a daily basis. Don’t restrict yourself. The same applies post-transplant – live each day and let your team worry about everything else because that’s what your donor has allowed you to do.

The post Lynda’s story: “Ursodeoxycholic Acid worked really well for around ten years – although there was cirrhosis there was no deterioration” appeared first on British Liver Trust.

In 2015 I was a full-time working mum of two young children, doing everything in the house and walking my 2 dogs daily. I was going to be tired, but I was floored so I asked my doctor for something to perk me up a bit. When he took my bloods one of the measures for primary biliary cholangitis was up at 600-700 when they said should have been 40. My medical notes showed that it had been like that through my second pregnancy, but no one did anything about it or even mentioned it to me.

At first I was told to stop drinking and exercise more. Then I went for more tests, had a liver biopsy, MRI scan and was diagnosed with primary biliary cholangitis. They put me on various drugs, including urso acid and I carried on with life as normal. I still felt tired, but not as much.

I had annual check-ups, but after seven years the urso wasn’t doing anything and my markers were really high. Then in the autumn of 2021 my home life blew up and I was under extreme stress. By December my eyes were going yellow and my bilirubin had shot up. My consultant said I probably had gallstones or a blockage in my bile duct. A scan showed everything was clear, so then I had a CT scan, an MRI and another biopsy.

My bile ducts had just shrivelled up, so bilirubin was building up in my liver and the only cure was a transplant. Apart from the urso acid, I was told to stop taking the medication because they didn’t know if that had caused it. I wondered if it was stress or if my liver had just had enough.

My son was in Year 7 and my daughter was due to do her GCSEs that year and I wondered how would they react if they thought they were going to lose their mum?

I couldn’t control my liver, so instead I got busy with things I could control. I got on with life with a smile on my face by being a good mum, exercising more, walking the dogs and watching my diet. And I had to work – someone had to pay the mortgage.

I told a few friends and obviously my family, so I had enough people to support me. I was getting yellower, but could live with that as everyone else was too polite to question it. I didn’t want to be the sick mum, the sick woman at work or someone who had people tipping their heads and asking: “And how are you?” I wanted to be the best I could because I got the impression that the decision to put me on the list would be about behaviours, outcomes and how quickly I would recover. And if this was going to be it, I wanted people to remember a smiley, positive supermum.

I was put on the liver transplant list, but would have to get much more poorly before I got the liver. I’m a single mum. How poorly did they want me to get?

By the middle of June I was put on the transplant list, which was a big relief, but I would have to get much more poorly before I got the liver. I totally got it, but really struggled with that too. I’m a single mum and my children need me. How poorly did they want me to get?

I’d lost weight and was jaundiced but if I put on my sunglasses I just looked tanned. People just kept telling me I looked great, which was the weirdest thing. In the meantime I went to Leeds every eight weeks and they recalculated my place on the list each time.

When winter started to kick in I started feeling sicker and looked more yellow. Everything started hurting – standing in the shower sent massive pains through my legs, I couldn’t put fuel in the car because that hurt too much and the itching got a lot worse. I was trying not to scratch with my nails because I was drawing blood, so instead I would press on the itchy area and twist the palm of my hand. My thighs were black from bruising and I started bleeding and it just didn’t stop.

My sister got married at the end of October and I was the maid of honour. I’d never been self-conscious until that point, but didn’t want to be there looking like a minion in a bridesmaid dress so I bought a ton of makeup, took a deep breath, arrived there with a smile on my face and didn’t take it off until two days later when we left. I was exhausted and some of the pictures are horrific – I wasn’t even yellow anymore, but verging on green but I didn’t want to be remembered as Mel’s poorly sister. At the wedding I danced the night away, talked to everyone and had the best time doing it. I think my dad was struggling with it though – he kept kissing me on the head and telling me how much he loved me.

My daughter knew everything that was going on. She was 16 when it all started going wrong and there was no way I could pull the wool over her eyes. She was like my little rock but I never told her mum would be gone if I hadn’t got the transplant. My son was only 12 at the time and didn’t really know what was going on. I just said “Mum’s got a poorly liver, but don’t worry mate, I’m going to get a new one”.

I told them both “You don’t worry unless mum worries” and they took their lead from me.

From Halloween onwards the itching got worse, the bleeding heavier, the bruising more severe and the pain unbearable.

One day I sat down at my computer at work and thought “I can’t do this.” I’d never thought that before and I’m filling up now just thinking about it.  But I was really upset when I saw my consultant in December and they said I was still “robust”. Who wants to be called that?

On December 21^st I told my boss that I had to stop work in January and at one o’clock that day I got a phone call saying there was a liver for me. I said something obscene down the phone as a knee-jerk reaction, then burst into tears. Then I told my daughter and she burst into tears. I gave her a big hug, told her I loved her and left. I didn’t even get the chance to say goodbye to my son because he was still at school. My parents cancelled all their Christmas plans, moved in and did everything with my children.

I felt like an ant being sucked up a Hoover. By 5am I was pacing around the hospital, it had been 10 hours and I didn’t think it was happening and I wanted to go home. Then at 6am all hell broke loose, I went to theatre and never looked back.

I asked them to play Gerry Cinnamon before I went under and was singing along to him as I passed out. Then when I came round the lovely liver nurse was with me, holding my hand, telling me that I’d had the drugs, but I shouted out “They’re not working!” and that’s all I remember because I was bobbing in between worlds.

I spent three days in intensive care, because they had no room for me on the ward. I had a great time and everybody was amazing. Then I was moved into my own room and I’ve never been so happy to have Christmas on my own – I was waited on hand and foot.

I was walking around the second day after the liver transplant

From the second day after the transplant I was walking around – by day four I was walking up and down stairs and on day seven I went home. They gave me a massive bag of pills – now I’m down to four in the morning and two at night. As soon as I got home I was active, just pottering around the house and cooking because I wanted to get back to normal. My parents were there until the end of February. I couldn’t have done it without them.

While I was on the transplant list three or four members of my family had contacted the living donor team and I felt so blessed. My sister was the best match – I didn’t want her to do it, but there was no stopping her and she got the green light to be my donor the day after I’d had my operation. My mum and dad were in bits because they were going through it with both of us. My donor was a true guardian angel – she saved me and my sister – thinking about that had me in tears.

I felt an enormous relief at first after the transplant, but then felt scared of this new baby liver I had to look after, then guilt because someone had lost someone so precious to give me this gift. I was so overwhelmed by the amount of people who had reached out and cared for me since the operation. Some though haven’t been able to deal with it – and I found out who my friends are. It’s been eye-opening.

The transplant was the only thing that was going to cure this condition, but there’s a 25 per cent chance it could come back because it’s an autoimmune condition. I still take the urso acid and have been on my best behaviour before and after the transplant. My doctors are really pleased with me and said: “Whatever you’re doing, just keep doing it.” The whole team were just incredible – from the people giving me meals right up to the consultants. They are a bit bossy – get out of bed, do this – do that, but if they’re telling me to do something they’re telling me for a reason.

I’m going from strength to strength – I’m now driving again, walking the dogs, have done some shopping, been away for a few night with friends and ridden roller coasters. All I want is to continue inspiring my children, especially Erin as a young woman.

I’ll never understand why it happened, but I’ve been given this gift and I’m going to treasure it with all I am. I’m a stronger and better person for it. I’m not spiritual but I’m so aware of the gift of life. It’s not about money or shopping or going out, but just stepping back and watching – I find myself doing that a lot now and appreciating the wonder of this world and seeing what my children are growing up into. I’m going back to work soon and I’m really excited about that.

The grim reaper was sitting on my shoulder, but I honestly believe the reason that I am still standing is because of how I looked after myself and how positive I remained throughout this process. Focusing on my children was really important too – for them to be in a world where I wasn’t just wasn’t an option. I was going to fight this.

I wasn’t ready.

I wasn’t done.

The post Clare’s story: “My bile ducts had shrivelled up and the only cure was a liver transplant” appeared first on British Liver Trust.

I was diagnosed with coeliac disease in back in 2011, but had gone a very long time before I got another autoimmune illness. In 2017 I joined a local running group RunDMC and started training for a half marathon and was feeling really, really tired. I went to my GP who asked for full blood count. The results showed a problem with my liver, so the doctor asked me to come off the pill because it can cause issues once you’re over the age of 30, but another blood test still showed a problem. When my doctor then did a virus blood test it showed I had Primary Biliary Cholangitis (PBC) and I was referred to hospital.

The consultant at Norwich Hospital confirmed the diagnosis, gave me ursodeoxycholic acid (urso) tablets and said I would have to take four of them daily for life. They gave me leaflets and told me about the British Liver Trust. I then had a three-month follow-up appointment and everything was fine, so they said let’s take it six monthly and then yearly and everything was still good.

When Covid came and we went into lockdown, my husband wouldn’t even let me go to Boots to pick my prescription up. He did everything, I stayed at home and would go out into the garden with the children. PBC doesn’t put you at risk, but my husband didn`t want me going anywhere when Covid hit.

In June 2020 I did a 5k run for a virtual event and the next day I couldn’t get out of bed. I spent a week like that. We just thought it was because I had a bit more to do than normal – home schooling was new to everyone and I had to keep the children entertained – but by the end of that week I was turning yellow. We rang 111 and they said I needed to go to hospital. My husband took me to our nearest one where blood tests revealed my liver level was very high. Luckily they had my results from the year before, the ALT had been 37 then and was nearly 2,000 now.

After two CT scans the hospital decided I had liver cancer

They admitted me and sent me for two CT scans from which they decided I had cancer. It was awful being told that and I feared the worst. I wasn’t allowed anyone in the hospital and had to relay this information to my husband who was then relaying it to my family. My twin boys were just over seven-and-a-half then and I was scared they wouldn’t have a mum to grow up with.

The hospital knew about the PBC and that I was under the consultant at Norwich Hospital, so they transferred me there because apart from saying I had cancer they didn’t know what was wrong with me. For four days before they transferred me they didn’t do anything, I was just taking up a bed space.

From A&E onwards I’d had the good-old classic ‘How much do you drink a day?’ from doctors and nurses. It happened every day and more than once a day. Each one was trying to get an answer out of me because were just seeing liver levels elevated and thought it was obviously to do with drinking. They kept asking because they didn’t think I was telling the truth. I had the same thing back in 2017 when I first became ill. Did I drink, did I take drugs, had I been abroad and got an illegal tattoo. Well, I don’t drink and haven’t been out of the country since I was three years old.

It makes me feel horrible and that they think that I’m lying to them. Doctors need to educate themselves more and know that not all liver conditions are alcohol related. Some liver diseases are caused by alcohol, but people who don’t drink or drink very little also have liver conditions.

I was taken over to Norwich at about 3.30am and three times that morning they took blood from me. I felt like a pin cushion. When my consultant came to see me she said: “You haven’t got cancer, I can tell you near enough 99 per cent sure, I think you have Autoimmune Hepatitis.”  AIH terrified the life out of me, I had this really big issue that if I caught Covid it I would die. (But I’ve since had Covid and was absolutely fine, I didn’t even have the antiviral drug because I felt really good. I’ve had five vaccines now and it just goes to prove that they do work).

My consultant said: “You haven’t got cancer, but Autoimmune Hepatitis”

I was sent for a liver biopsy and the consultant said she would start me on steroids. I was discharged with six boxes of prednisolone and I have to take six every day and also omeprazole for the tummy, AdCal  to help with my vitamin D and calcium as well as my urso tablets. The consultant wanted to see me a week later in outpatients and to have my bloods taken to make sure everything was OK.

At that appointment she confirmed that it was Autoimmune Hepatitis with an overlap of PBC. I asked her why it had happened and she thought it was because I’d got the PBC under control and my liver just thought ‘What else can we give you’.

The consultant apologised and said I would have every symptom going because I was so young and I have, but we have learned to deal with it now. The weight gain has been the hardest – more so on my face, it’s now round and I’ve never been used to having a round face. I had my bloods tested every other week until Christmas of 2020 to make sure everything was under control, but after six weeks of being on the steroids I was getting this awful pain around my liver area and my ribs.

My consultant thought my body was saying I’d been on a high dose of steroids for a long time and we needed to start lowering it. We dropped 5mg of steroid and she introduced the mycophenolate at 500mg twice a day. I went to see her ten weeks later and she said my blood work was coming down nicely, so the dose stayed the same. But when I next went to see her we’d got stuck again, so another immunosuppressant, tacrolimus, would have to be introduced. From there everything’s been going OK. It’s not been an easy ride, but I’d like to get to the lowest does of the steroids possible.

I had a liver biopsy last year and my liver just has some light scarring – it’s at the very first stage of fibrosis. The consultant said it was the best outcome I could possibly have considering how bad it was back in July 2020. I feel very lucky not to have cirrhosis.

When I was first diagnosed with autoimmune hepatitis, people would ask me why I wasn’t at work. I didn’t want to tell anyone because just saying the word hepatitis made me feel dirty and that people would think I’ve been doing things I shouldn’t. But as time has gone on over the last couple of years I have told people.

“I decided to run the London Marathon for the British Liver Trust because it helped me and my family

I still run now, but I say that loosely, the first year after being out of hospital I walked everywhere. My friend signed me up for the 2021 Virtual London Marathon and we walked it in 8 hours and 24 minutes. It was then I decided I wanted to go to London and raise some money for the British Liver Trust because it helped me and my family. I knew I wouldn’t be able to run the whole London Marathon because of the after-effects on my liver, but I had no need to run it and decided to walk instead. I filled in the form and was rejected at that start because nine people had applied for the Trust’s six spaces, but just 68 days before the marathon someone dropped out and I was offered the place.

So we went off to London – me, my husband and two children. I knew no one else was coming, but on the day, all of sudden somewhere between mile four and five, I heard my name being called and when I looked up I saw my sister and her husband. I ran to them and gave them a big hug. Further down the road were my mum and dad – I hugged them and cried because I didn’t know they were coming. Audrey and Abi from the British Liver Trust were there supporting us too, as were people from other charities. If you’ve got your name written on your T-shirt they’ll all shout for you.

I completed the London Marathon in 6 hours 21 minutes and nine seconds and I walked the lot of it. For the first 16 miles I was in the 13-minute mile category and when I’d finished my average pace was 14.5-minute mile. There were times when it was hard, but it was an amazing day and I would definitely do it again.

The day after I needed something to hold onto when I walked because my legs didn’t belong to me, but three days later when I was walking the children to school they were saying “Mummy, slow down, you’re going too fast for us.” The pain had gone – I had a few blisters on my feet but nothing major.

I’m now well enough to work full five days a week and I don’t let my conditions rule my life. If I have a full-on week or do too much, I perhaps feel tired for the next week or so, but liver disease won’t stop me achieving what I want to achieve. I’m not going to think I can’t do this anymore. Whatever your goal if you take small steps towards it, you’ll get there.

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