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’m 36 years old and have lived with hepatitis B for 34 years. There are two possible ways I could have been infected. When I was two, we lived in an old, mouldy building. A company sprayed it, but the chemicals were too strong, and my whole family ended up in the hospital.

This was Poland in 1989 – the final year of communism – and the hospital didn’t use single-use needles. Then a year later my mum was working in the hospital and got infected with hepatitis B in the laboratory. When they checked the family, they found I had it too.

When I was a bit older I remember my mum telling me I had a sick liver and would need a blood test every six months, but to not worry. I didn’t, because they gave me chocolates after they’d taken my blood, so I was always quite excited to go! In 2011 I had a biopsy where my score was between F1 and F2, which meant slight inflammation and damage, although my blood tests afterwards were good which the doctors thought was slightly strange.

In 2013 I moved to the UK and continued having a blood test every six months. The results were always good, but since 2024 my viral load has been going up and down. One time it was 5,000, the next it was barely detectable. As a result, I had blood tests every three months and another biopsy – and the score was F0. My doctors said the virus sleeps for a bit then wakes up and it’s affecting my immune system. They wanted to put me on antivirals, but I was terrified because I’m an only parent and sole breadwinner. I started spiralling about losing my job and struggling to pay my bills. Now, in 2025, my viral load is high again, and they don’t want to wait any longer. I feel ready to go through with it—I feel like I need to prioritise my health first.

Immune system

I try to help my liver by having a healthy diet and not drinking or smoking. However, quite often I feel really tired without reason and have muscle ache and sometime feel pressure where my liver is. My immune system is working harder than in a normal person and I catch everything around, I had Covid three times and flu a couple of times despite the fact I’ve had the jabs.

There’s a lot of stigma around hepatitis B. Many people don’t know what it is or think it’s only to do with sexual contact or it’s the same as HIV. It’s upsetting and frustrating to have to keep explaining it. It’s 2025 and people should know what it is by now. Romantic relationships can also be difficult because hepatitis sounds so scary. Luckily my ex-husband was quite understanding, but I haven’t dated anyone for five years. I’m focusing on my child and work and I’m good with that.

Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well

I would like to see more understanding, especially around applying for work. It’s a kind of stigma to be told you can do everything you want, but on the other hand… When I was 16, I really wanted to be a doctor, but thought I couldn’t apply and only found out that wasn’t true much later on. Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well. When I applied to be a higher-level teaching assistant a couple of years ago, I had to answer health-related questions, including about hepatitis B. I tried to be as honest as possible, but felt uncomfortable having to explain my story to an interviewer. I was told I might be offered the role if I was in a stable condition but would have to let them know if anything changed. They did take me on and the people are lovely, and I’m now training to be a primary school teacher, but my fear is that a future employer could worry about me becoming unwell and hire someone without any issues instead.

There are a lot of opinions about vaccines too. My son was vaccinated immediately after birth and I believe vaccines are really important and protect us, but some people look at me like I’m from Mars when I say that.

It’s not an easy life. I’ve recently been diagnosed with PTSD, anxiety and depression and found the British Liver Trust by Googling when I was having a really bad day. I was crying a lot because I was worried about what would happen to my son if I was really unwell, because my parents are in their 70s and wouldn’t be able to come to the UK. I just needed someone to talk to and sent the Trust an email. They invited me to join the support group. It really helped, and it’s good to know the nurse-led helpline is there too if I ever need to talk to someone. I will also be starting therapy soon, so fingers crossed I’m on the right track.

Hepatitis B – Breaking the Silence

When the British Liver Trust asked me to be part of their Breaking the Silence report on Hepatitis B I agreed because it’s really important for people to know about the virus. A dear friend of mine didn’t know they had it and recently passed away from liver cancer.  It was very upsetting and made me realise that could have been me in 10-15 years, if I hadn’t been diagnosed and monitored.

The Trust also invited me to share my experience at the launch of the report in Westminster in December 2024. There were MPs there, as well as professors and doctors and they talked about the latest discoveries that will be great for hepatitis B. I was then introduced and made my speech. The room was silent as I spoke and people were nodding their heads. I think it made them think about life and illness and what we can do to help others. They said it was even better than hearing about scientific discoveries because my speech was really personal. I really felt I made a difference and that felt so good.

If you are diagnosed with hepatitis B, listen to your doctors and stay calm. You will be ok. You can live with your liver like that until you are 100. I say this to people who are newly diagnosed and really, really scared and feel like their world is shutting down. It’s really not that bad and I am the example of that because I’ve been living with this virus for 34 years.

If you’re having a bad day and need to lie down, then lie down – your liver really likes it when you rest. If someone wants to disturb you when you’re lying down, tell them you’re doing it for your liver. Try to be happy and laugh a lot, because it will help you and your liver too.

The post Roza’s story: “There’s a lot of stigma around hepatitis B. Many people think it’s only to do with sexual contact or it’s the same as HIV.” appeared first on British Liver Trust.

I found out I had Hepatitis C in 2011. I had never heard of it. This came completely out of the blue, with no symptoms other than an occasional pain under my ribs on the right-hand side which led me to make an appointment with my GP. Gallbladder stones were initially suspected but not found. No one knows when I was infected or how. I didn’t fit the usual profile – intravenous drug taking, blood transfusions, dental or surgical treatment abroad.

I was referred to the local hospital to meet the hepatitis nurse. She went through a kind of flipchart explaining the functions of the liver.  The illustrations made it look like a children’s book. Then she told me about the treatment, six months of drug treatment that would probably make me feel very unwell.  I asked if there were support groups or people I could talk to. She replied that I probably wouldn’t find that helpful. Then she asked me when I wanted to start the treatment. The whole thing was totally unreal. I felt completely at sea and desperately alone and could not answer her questions. I had retrained for four years into another profession following a very unexpected and traumatic divorce and had only been six months qualified into my job. This new job was my way up from the ashes of my previous life.

I decided to see a consultant privately at one of the centres of excellence for liver diseases. One of the first things he alluded to was the stigma surrounding this illness. The message was, in brief, to choose carefully who to disclose this to. I felt angered by this and even more alone.

Mild liver damage

My liver damage at this stage was mild and he gave me two options.  Get treated now with a high chance of clearing the virus but no certainly that I could continue with my job due to the side-effects or wait for a trial. Decisions again.  I chose the latter and attended yearly check-ups. During this time I tried to take control of the situation. I bought myself a juicer, cut out all alcohol (which wasn’t a hardship as I had never much liked the taste of it), tried to make my healthy diet even healthier, tried Chinese herbs and acupuncture.

A couple of years later, the hospital contacted me with details of two possible trials. Trying to weigh up the medical information, reading about the possible side-effects, some of which included death, and if they did not work having to fall back on the dreaded Ribavarin/Interferon cocktail was a complete nightmare. Such was my need for reassurance and certainty that I even tried to explain the pros and cons of one trial over the other to my eldest daughter, who of course was just as much as sea as I was.

I discussed it too with the consultant heading the trials. This was traumatic in itself as he did not seem able to tolerate my anxiety and indecision. In the end he made the decision for me. There were other trials coming up much shorter treatments and without Interferon and we agreed to wait for this. In January 2015 I became patient zero of a 12-week trial for Genotype 3 patients with cirrhosis who had not previously been treated. By this time, my fibrosis had developed into an early stage of cirrhosis. There were further complications as different labs came up with different analysis of my genotype. More stress, more anxiety but also first-class treatment and support from the trials team. In the end the treatment started, my viral load dropped massively after a few days of treatment and I cleared the virus without having experienced any side effects from the medication.

I remarried in that same year, Hep C free.

A year later I became a grand-mother for the first time. As I cradled my grand-daughter’s perfect brand-new little body in my arms seconds after she was born I remember feeling so relieved that this horrible virus was no longer inside me.

Although the main threat had now gone away, a level of denial about what had happened remained. I did not initially take on board the full significance of the six-monthly appointments at the hospital for scans and blood tests, that is, liver cancer surveillance.  As time went on I came to accept that the sonographer’s words,” nothing has changed”, were the best news I could expect. The blood test results produced mixed feelings. Elation if my platelet count went up, disappointment if my cholesterol increased. My trust in my body had been strongly eroded. I became inhabited by a new sense of vulnerability and concerns about how my liver would cope in the face of other illnesses particularly those involving strong medications.

Minimal symptoms

Then in 2020, Covid came along. What did it mean for me? Before the first lockdown had been officially declared I decided to work entirely remotely. One of my six-monthly visits to the hospital fell at the end of March 2020. I need not have lost sleep at the thought of attending a usually bustling hospital during a pandemic. The place was like a ghost ship. I was the only person attending the out-patients liver clinic and, again, the only patient at the ultrasound department on that day. I was told that there were 300 patients with Covid at the hospital and advised to push doors open with my foot. Little was known then about the virus and my doctor’s parting words were simply- “don’t get it, we don’t know how your liver would cope”.

Whilst the same rules applied to everyone at the beginning of the pandemic, I felt that strong sense of isolation and aloneness again when relaxations were introduced and testing was no longer widespread. My difference was made visible again this time from a social point of view and although I tried to navigate this phase of the pandemic as reasonably and rationally as possible, for my sake and that of others, I sometimes felt their lack of understanding and resentment.

Despite the undeniable damage to my liver caused by the virus, my symptoms even before treatment were minimal and my high energy levels remained unchanged. What I hope to have shared through my story is the unseen emotional and psychological impact this illness had on me in different ways and through the course of external changing circumstances. Although this is rarely talked about, I suspect I am not alone in my experience. For those for whom it resonates, I hope they will find it helpful.

The post Veronique’s story: “My viral load dropped massively after a few days of treatment and I cleared the virus without any side effects” appeared first on British Liver Trust.

I’d gone my whole life without any real health problems until 2022 when I was 18 and became quite unwell with a cold that never seemed to go away. I thought my immune system must be a bit tired after having had Covid, but in around April 2023 I woke up one morning and felt really different. I had a stomach ache and couldn’t keep any food down.

My doctor said it could be a number of things and ran some blood tests. He rang me later that day to tell me my liver enzymes were at 1,000, when they should be between 30 and 40. That was a real shock. I had more blood tests and a month later I saw him in person – by then my skin was itchy and he told me I was looking a bit yellow.

Everything now came crashing down. I was in my final year of college but couldn’t go in every day – I was sleeping so much because of the fatigue. Thankfully I had a lot of support from my college and mentors and still managed to get a good grade.

I was finally referred to a specialist and had a liver biopsy in July. I was completely alone and terrified, but it was all right. It’s not that invasive and there’s definitely worse things you can go through. I was looked after and supported amazingly by the NHS and after four hours of recovery I went home. Unfortunately, because of the state the NHS is in, I had to wait three months for the results. I had no medication and the upper right quadrant pain, fatigue and itching were getting worse. I was in quite a bad place and have blocked out a lot of that time because it was so difficult.

Steroid prescribed 

The biopsy showed there was no scarring, only inflammation. While the results were inconclusive, my consultant was 99% sure it was autoimmune hepatitis. All he told me was that it’s an autoimmune condition where cells attack the liver because they think it’s a foreign body and he prescribed a steroid called Budesonide. I needed to know more about the condition, so I Googled it and started spiralling.

My consultant had said it was unlikely I would get side effects from the Budesonide, but I developed joint weakness and pain and had to use a crutch. I also had extreme hunger and quickly gained two stone in weight – I’m only 5ft 5ins and my teeth felt very sensitive too. I told him the side effects were unbearable and he said: “Oh well. That, sadly, is just what happens.”

I had a lot of rude comments about my weight gain which made me feel alone and insecure and people who I thought were close friends said I must have drunk too much alcohol on my 18th birthday. Maybe it’s funny one time, but when it’s still continuing into the second year of the diagnosis, I just couldn’t be bothered. I didn’t engage – if you give people attention back they keep feeding into it. There are so many different liver diseases which aren’t related to alcohol and more people have them than you think.

The British Liver Trust’s website was really informative and seeing other people’s stories made me realise it wasn’t all doom and gloom. I had no idea about diet or exercise so the information about that was really useful too. I now feel I understand autoimmune hepatitis better.

I’m taking fewer steroids now because I had good results from my blood tests, but might have to take more again. The results are always up and down, but since starting the Azathioprine I’m feeling a lot better, have less muscle weakness and don’t need to use my crutch anymore which is great. I’m still tired but not as extreme as before and still have the teeth sensitivity, but I’ve managed to lose nearly a stone in weight. It’s hard to get the weight off once it’s on, but I’ve been working hard.

When I saw the British Liver Trust’s 30 for 30 Challenge last year I was staying at home, didn’t have much to do and was feeling quite depressed. I thought I should do something for the organisation that is trying to help people like me, so I created art for every day. Lots of friends and family donated which was really nice of them and I raised £160.

Diagnosis is not the end of the world

I’m now spending a gap year Germany, still have blood tests every month at my local doctor’s surgery, then forward the results to my UK doctor and we have a telephone call about it. The appointments aren’t as often as they should be, but that’s because of how the NHS is at the moment.

I thought this condition would make my life completely different to what I wanted it to be, so I’m proud of what I’ve accomplished. I made the long journey to Germany, live away from my family and go to school every day. That would still be a big thing without any physical health issues, but it shows that if you work with your doctors there’s no reason why you shouldn’t be able to do these things. I now want to live out here permanently and get an apartment and a job.

Being diagnosed can be traumatising, but it’s not the end of the world. There are still so many things you can do, you don’t have to feel limited, it’s just about finding your own way around it. Stress won’t help you physically, so go easy on yourself and speak to someone about it if you need to. It’s not something that can be brushed off.

The post Millie’s story: “I thought autoimmune hepatitis would make my life different to what I wanted, so I’m proud of what I’ve accomplished” 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.

I work in research relating to alcohol so I knew the 150-200 units a week I was drinking was way more than the government limits. A lot of it was to help me deal with work-related anxiety and stress. When the stress was worse, I would drink more – it was like a crutch.

I went to my GP practice about 10 years ago and saw a very young female doctor who I could open up to. She explained the levels I was drinking were problematic, but crucially she told me not to stop drinking immediately because it could be harmful. She put me on vitamin B and thiamine to reduce any potential damage to the brain and told me to come back to discuss the next steps. However, she was a locum and the next time I went back the GP was an older male who was very rude. He said: ‘You’re fat and you drink too much.’ He wasn’t wrong but he made it clear that I was a problem and didn’t offer any solutions, so I didn’t do anything.

I later went through a period of meeting with an alcohol counsellor, but it was quite ineffectual and focussed more on cutting down rather than giving up alcohol. For example, it was suggested that ‘If you drink eight cans of strong cider, try to reduce it to seven.’ I drank wine and it’s hard to measure it like that. I suppose you could do it in terms of bottles, but once you’ve opened a bottle it seems a shame to waste it. Until all the anxiety and stress were dealt with, I didn’t have the mental and emotional space to deal with the alcohol.

Liver damage not addressed

I have a rare chronic condition called sarcoidosis for which I used to take steroids which made me put on weight and my liver function would always come up high. However, I also started getting unexplained abdominal pain they thought could be kidney stones or diverticulitis but didn’t know for sure. My GP referred me to the assessment unit at the local hospital – they did tests but couldn’t find anything. At one point I went to my GP to try to get medication for a separate condition and he said: “You’ve damaged your liver; I’m not giving you anything.” I was so angry at his rudeness, but looking back now, I am more frustrated that he knew I had liver damage but did not try to do anything to address it.

It was only when I was involved in a colleague’s diabetes research project at work that blood test results came back which suggested I really needed to speak to my doctor. This time, I saw a different GP who was really good and re-ran the blood tests, but he told me over the phone that it indicated cirrhosis – a diagnosis he perhaps did not have enough information to give, or have given within a phone call.

I was referred to gastroenterology/hepatology and while my ultrasound results weren’t that bad, a FibroScan came back very high at 38. Because this all happened during COVID-19 and I think the hospital was quite short-staffed I only saw the nurses who did the FibroScan and the people who did the ultrasounds. I was getting letters from people on behalf of consultants, but never saw one. My GP also referred me to the local alcohol service and I went once or twice but I didn’t find them helpful. I was told I had to sign up for their groups, but I’m quite introverted so I didn’t want to. I soon left and never went back but did manage to stop drinking alcohol completely.

My FibroScan score had gone down, presumably because I had given up alcohol completely

For the first year and a half, I wasn’t actually sure of my diagnosis, but eventually, I was told by a nurse during a telephone call: “You don’t have cirrhosis and we don’t think you ever did”. Around the same time, I received a repeat FibroScan and the score had gone down to 14, presumably because I had given up alcohol completely. I finally got to see a clinical nurse specialist in the autumn of 2023 who said I was more stage 2 liver damage than stage 3 and she thinks my liver will still be improving. If it wasn’t for my other health conditions, she would have taken me off the gastroenterology/ hepatology list.

I’m feeling a lot better now. I’m on a different medication for my sarcoidosis and losing weight which is also helpful for the liver. I can’t rule out that sarcoidosis has affected my liver but that hasn’t been explored because my level of alcohol use was almost certainly the cause.

Emotionally I feel fine too, as the work-related stress has mainly gone. I’m now a trade union rep at work to ensure other people don’t go through what I went through with work-related stress and am getting involved with patient engagement groups for liver, alcohol and mental health which I find very interesting. I am in a job where I do have a voice and want to use it – I’m keen that things are done right for people with alcohol-related liver disease. I recently attended an event in the Westminster Parliament organised by the British Liver Trust where I could describe my lived event to MPs and other parliamentarians. Although I found it nerve-racking, I felt it was useful and I was heartened by the number of MPs who attended.

Liver disease stigma kills 

I teach people about alcohol and drugs in my job and that stigma kills. I try to make sure my students don’t use stigmatising language – the words ‘alcoholic’ or ‘alcoholism’ are stigmatising and don’t mean anything in terms of clinical diagnosis. They give you the opportunity to say: ‘I’m not that bad’, like the old joke that the definition of an alcoholic is someone who drinks more than you. You’re damaging your body and other organs because of your alcohol consumption, but these bogeyman phrases almost give you permission to keep drinking as you are not ‘that bad’, for example needing a drink first thing in the morning.

The power of language and stigma is really important – I strongly believe it’s what stops people from getting help. Healthcare professionals need to take liver disease seriously too, not stigmatise patients, be consistent and ensure people get the help they need if they want it.

(Gordon pictured with Paula Barker MP at the Westminster Parliament event)

The post Gordon’s story: “I’m keen that things are done right for people with alcohol-related liver disease” 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.

The post Rebecca’s story: “Liver disease won’t stop me achieving what I want to achieve” appeared first on British Liver Trust.

Alan: I’d been drinking since the age of 25 even though I didn’t like alcohol. It started as a pint on a Saturday night, then Sunday too and then every night. Five years ago I started drinking 24 hours a day and was spending £40 a day on alcohol – it was embarrassing going to the shop to buy it. I had a breakdown in 2012 and have never been able to work since, but being signed off sick was basically an excuse to spend more time drinking. Before I knew it, I was addicted – I was having it through the night, through the day, on cereal… but I’m happy to say I’ve given it over now.  

Fran: It was horrendous and each day was different. The way he treated the family was unbelievable and it tore us apart, my poor mum probably got the brunt of it, because that’s who Alan is closest to. He had forgotten about it by the next day, but we hadn’t. At some point each of us wanted to slap Alan really hard but we weren’t going through it. If he had something to eat it was a miracle and then he was a bit more sociable then. We’ve had such arguments at times. I haven’t liked him, but I always loved him. 

Alan: I’ve experienced so much stigma and became unemployable. More and more was coming at me, like ‘Don’t go near him, he stinks of alcohol’, ‘Don’t employ him he’ll nick all the money out of your till’. Ignorant people say that who are no better or worse than yourself. Everyone has their problems so who has the right to talk? 

Once when I was in hospital on a detox a nurse went to the gentleman’s toilet and there was pee all over the floor. She blamed me for it and said all drinkers are liars. I confronted her and she said ‘I didn’t say that, I was talking about somebody else’. I know what I heard. 

Medical staff would say I’m taking a hospital bed away from someone with a serious illness

Medical staff would say to me: ‘You’ll be back and back and back. Your type always are’ and ‘Here we go, another alcohol related one. You’re pouring drink down your neck and taking away a hospital bed from someone with a serious illness’ – I’ve had that more than once. And a doctor once said ‘You are a stupid man, you don’t listen to anyone apart from the bottle. Give yourself a shake and sort it out’.  

Well, if I could do that I would have. How many thousands of pounds was he paid to tell me that?  

The police are the worst, they bang you up and then let you go, as if that’s going to help. I would drink to recover from prison and end up back in there. The police were regulars at this house and Fran even asked me if I was going to get a Christmas card from them.  

I felt like I was being judged all the time. It made me feel small and dirty and made me want to drink. How dare they? They don’t know my life, so don’t judge a book by its cover. It became a daily thing so I hid in my bedroom and didn’t go out.  

Fran: The stigma makes me so angry. Anybody could go through what Alan did. Rather than just saying “Ugh, he’s an alcoholic” think about why he did that. Alan’s right, it was his fault that he drank the alcohol, but there’s a whole story about what he’s been through.

We need to stop the stigma, I feel really strongly about this. The more people are aware of it, the more the stigma will go away.

Alan: When I look back I disgusted myself, nobody was pouring the alcohol down my neck – so I suppose I was giving myself stigma too.  

On November 18th last year the doctor in the hospital told me I had to stop drinking or I’d be dead in eight months. I could see someone taking that the wrong way when they’re weak and vulnerable, because they think they’re not strong enough to stop, but everyone is. I was already reducing how much I drank when I was diagnosed with cirrhosis, but on the morning of that appointment I drank three litres of cider just to get me there. When the doctor told me, the first thing I thought was ‘My poor, poor mother what’s she going to say?’ And then I thought ‘Thank God I don’t have to drink any more’.  

I realised I either had to take my own life or get better and I chose to get better. I’d been through about four or five detoxes with a charity, but all of them failed, so I decided to do it by myself. I had two bottles of cider, one opened and one not. The option was there if I wanted a drink, but I didn’t and threw them away after two weeks. There was no support available apart from my family and I have got the best family ever. I did a lot of it for them, but most importantly I did it for me. 

All kinds of dangerous things happen to you when you’re coming off alcohol, like seizures. It was very hard work. I was a mess – kicking and screaming – but I took every day at a time. I’m still sorting out the mess that alcohol left me in with the way I spoke to people and the things I did to people – the borrowing of money and never giving it back. 

Sometimes I think if I started to cry I wouldn’t ever stop.  

Fran: We all do, as a family. I have moments where I do it in private, but then I put my big girl knickers back on and away I go. I support Alan as much as I can and worry about him all the time.  

Alan: I’ve had so many failed attempts to stop drinking and I would tell people to keep trying to find their own. It doesn’t happen overnight, and if it doesn’t work one way then just try another until you find it. I’ve still got people who will cross the road to avoid me and it makes me feel the size of a thimble. But then I think: ‘Hang on a minute Alan, you’ve become a powerful man’.  

I physically hate the thought of alcohol now and can’t stand it on people and for a long time I just relied on water and orange cordial. Fizzy bottles make me feel sick at first until I realise there’s just a soft drink in it.  

Fran: Since the day Alan found out he had cirrhosis the family has worked as a team. It’s been a massive learning curve and it’s brought the family more together. It’s been hard at times but everyone is on the same page now and our elderly parents have been amazing.  

Alan: One day I feel stronger, the next I spend all day in bed. Now when I say I want to go to the shops, my family thinks it’s for alcohol, but walking to the shop where I used to buy my cider makes me physically sick.  

Walking up the aisle where the alcohol was really upsets me and once I fair wanted to grab a bottle and just undo everything I’ve done. My achievement was not picking it up. I had the choice and the power not to. 

I now have weekly drains in hospital which remove about eight litres of fluid from my tummy. I’m wheelchair-bound but can get around using a walker, the doctors and nurses have very kindly got me a hospital bed for my bedroom – they’ve been magnificent with disability aids.  

Alcoholism catches up with you so soon and don’t take the attitude that you’re immune to dying because nobody is. 

Join our campaign to Stamp out Stigma
More stigma stories

The post Alan’s story: “I felt like I was being judged all the time. It made me feel small and dirty. How dare they?” appeared first on British Liver Trust.

During the latter part of the 1990s, my mother-in-law sadly passed away as the result of a brain tumour, my daughter was about to start school and I began to feel unwell.  

The doctor thought it was depression, but I did not feel this was accurate. I was prescribed beta blockers and sent for blood tests. Results showed that my liver function readings were high and it was suggested it was alcohol induced. The GP suggested I was a secret drinker who had hidden bottles of sherry in the kitchen cupboards! This was very upsetting and I strongly denied it. To investigate further, I had my blood tests repeated and was told not to consume any alcohol during this time.  

At a follow-up appointment, the GP continued to suggest my heightened liver function readings were linked to alcohol and shockingly said his wife had mentioned to him that I had chosen a bottle of wine in the local playgroup raffle. It was obvious he had discussed my case with her. I should have raised the alarm about this, but as I was young and in my late twenties, I was not very confident or assertive.  

Three months later, my liver function readings were even higher than before and I was referred to a liver consultant. A liver biopsy and an endoscopy showed I was suffering from an autoimmune condition, Non-Cirrhotic Portal Hypertension and Primary Biliary Cholangitis. When I went to see a different GP, a locum, for a sick note, he handed it to me in a very dismissive way. He asked why I needed a liver biopsy and I said that I was unsure. ‘It’s obviously alcohol related’ was his reply (though he just presumed it was alcohol related).  

I don’t judge other people but alcohol wasn’t the cause of my liver disorder and I didn’t want the label attached to me and all the negativity and stigma related to it.  If it had been Joe Public I would have put it down to ignorance, but it was members of the medical profession. It’s now written in my medical notes not to say that the problem is alcohol related.  

My condition was managed with prescribed medication and until June 2019, I generally remained in good health and had regular check-ups.  I had no outward symptoms but at times felt quite unwell with nausea and extreme tiredness which I controlled by taking myself to bed for half a day.  

Three years ago, I started getting more symptoms, which included fluid buildup in my stomach and increasingly breathlessness. The consultant suggested I may require a liver transplant as medication no longer seemed to be the answer. I was devastated and it took me many weeks to come to terms with it.  

My stomach continued to increased in size and I became increasingly breathless and was very unwell. Eventually I was admitted to hospital when I fell at the top of the stairs and was unable to stand up.  

I had a series of tests to assess my suitability for transplant including physical, medical, and psychological assessments and was then accepted onto the National Transplant Register. It was a very emotional day.  

Following an episode of hepatic encephalopathy, I was admitted to hospital and between January 2020 and September 2020, went back every two weeks for ascetic drains. Between 4500 – 6300 ml of fluid was removed each time. This is the equivalent of 4.5 – 6.3 kilos (9 – 13lbs). The physical symptoms I experienced at this time were difficulty sleeping, encephalopathy, extreme itching and tiredness, feeling and being sick, fluid retention, generally feeling ill, jaundice, oesophageal varices and an umbilical hernia.  

Some of the psychological symptoms that I occasionally suffered included were fear of dying, feeling worthless, and a loss of control.  

I received a telephone call to say that a donor liver had been found

On 26th September 2020 at 2.15am I received a telephone call to say that a donor liver had been found and I needed get to Birmingham as soon as possible. I was taken to theatre about 8.45am and the operation was completed by 2pm. Once transferred to the ward, I was able to speak to my family and friends which was fantastic. I made really good progress for the first week. However, on Saturday 3rd October, I began to feel unwell. I was in pain, was sick and had diarrhoea.   

By 7th October, I had deteriorated significantly and was sent back to ICU as I had had a seizure, thought to be caused by immunosuppressant drug overload. I was given a lumbar puncture to check for infection and a biopsy to check for rejection.  

I don’t remember a great deal about my time in ICU, but I do remember being annoyed with the doctors, as I ‘knew I was dead’. Back on the ward I couldn’t understand what a daughter was and thought the building was spinning.  

I was finally discharged two weeks later. It was such a fantastic feeling to be finally returning home and feeling so much better than I had for many months. I had lost 10kg since having the transplant.  

Tennis had always been my passion, but I thought that I would never play again. I was very apprehensive at first, but was able to hit the ball much better than anticipated. I’m hoping to play weekly and one day to compete in the Transplant Games.  

At a later appointment at the post-transplant clinic I was quite shocked that things were not going to plan. My gastroenterologist said the test results suggested cirrhosis and it could mean going back on the transplant register. I was devastated.   

I was feeling increasingly unwell, tired, extremely breathless and my stomach was increasing in size. I thought I was going to die. It was decided I should be fitted with a stent due to a narrowing of the portal vein which was carried out on my birthday! Now I no longer looked pregnant and could breathe normally. I feel like a completely different person, it’s like a miracle has occurred. 

My liver function readings were somewhat deranged

A year later, despite several setbacks, I felt amazing and on the road to recovery. Onwards and upwards is my philosophy. However, by November, I accessed my blood results online and was horrified to see the liver function readings were somewhat deranged.  

I was diagnosed as having acute rejection and narrowing of the bile ducts. The rejection was treated with steroids and within two weeks, blood results showed a marked improvement.  

However, I still feel very hurt about the stigma I experienced. It will never leave me. Even recently I was speaking to a lady about my transplant and felt I had to say it was not alcohol induced. For a very long time it was just me and my husband who knew about my illness. I felt unable to talk to friends about my condition because I was worried they would judge me, but I was very wrong in that assumption. I gradually told them over time and they’ve been amazing.  

Before I would have a glass of wine every now and then, but that’s it. Since the transplant I haven’t had a drink at all out of respect to the lady who donated her liver. I’ve not been told that I shouldn’t but I can still socialise without having a drink.   

Despite having gone through an extremely difficult time, I want to highlight the positive experiences. I feel a different person, do not take anyone or anything for granted and appreciate life more than ever. Materialistic possessions are not important, all I want is to live and be happy. I am in awe of all the treatment and care I received and am so grateful to the NHS and all who have been involved in my care. Whilst I am no longer able to work, which has been difficult to accept, I want to remain mentally active and volunteer in research which I hope others will benefit from. I have given a talk to a group of Physiotherapy students from Coventry University regarding my illness and time spent in ICU.  

This makes me feel that I am ‘giving something back’ to society. I am looking forward to a long and fulfilled life and will embrace all that the future holds. I am loving being a Nanny and look forward to watching Leo grow up and our children being happy and content in all they do.  

Join our campaign to Stamp out Stigma
More stigma stories

The post Samantha’s story: “The GP suggested I was a secret drinker and I still feel very hurt about the stigma I experienced. It will never leave me” appeared first on British Liver Trust.