From a young age I had headaches, tiredness and stomach pains. A paediatrician diagnosed growing pains and stress, while the headaches were put down to sinusitis and an eye test was suggested. When I was 16 the symptoms and pain became severe and I started acting really erratically – I thought everyone was my enemy and I hated all my teachers and no one could understand why my behaviour had changed so much. I was admitted to hospital and after numerous scans and tests primary sclerosing cholangitis and ulcerative colitis were confirmed.

Having two chronic conditions was devastating. They affected what I could do on a daily basis and it was very difficult for people to understand that they wouldn’t get better. I’d been a gymnast for eight years but had to give it up and my teachers and friends at college were concerned because I kept complaining of headaches and falling asleep. I missed so much of my course that I got put back for a year which also caused me to lose friendships. The illnesses had a great impact on my family too, my mum had to stay in hospital with me for nearly two months, supported by my dad and brother, which caused her difficulties at work.

Support from British Liver Trust 

I was determined not let these illnesses rule my life and I got a lot of support from my clinical nurse and youth worker. I also joined the British Liver Trust’s PSC support group and the Children’s Liver Disease Foundation and gained a lot of support from both. They are there for me and my family when we need them.

It took me three years, but I eventually finished college aged 19, then completed an access course to get into university and a physiotherapy degree which took seven years due to my health.

In my first year at university I was in and out of hospital with infections and when I got one in my liver it would upset my bowels and vice versa. By now I’d been on steroids for six years and my doctors were running out of treatments. I had infusions every eight weeks at the hospital, but they didn’t make any difference, after six months they tried something called Humira where I had a loading dose of five injections and would then inject myself every two weeks. That didn’t really help much either, so they upped it to every week, but again there was no improvement.

As I was recovering from the surgery my liver function started getting better

I was now quite poorly and had no quality of life. I was on NG feeding and would try to eat more, but the nausea was bad and I knew it would upset my bowels so I was underweight and couldn’t maintain my muscle. Wherever I went I had to plan carefully to make sure there was a toilet and it got to a point where I couldn’t leave the house because I was having accidents which was horrible and embarrassing.

My doctors said I could either stay on the Humira and see if it would have an effect or try surgery. Between the surgeons, IBD nurses and me we decided on the surgery and I had a subtotal colectomy where they removed my entire colon and replaced it with a stoma bag. I opted for elective rather than emergency surgery to avoid any issues and complications.

As I was recovering from the surgery my liver function started getting better and now my liver has calmed right down and I have managed to stay out of hospital for three years. I don’t have to worry any more about there being a toilet if I go out and have an app on my phone that alerts me as to when the stoma bag is getting full, which is good for my peace of mind.

My liver is bad, but also good

I now have an MRI, FibroScan and ultrasound every year and go to clinic every six months. The sonographer told me that while my liver is bad, it’s also good, which means that while it doesn’t look like a normal person’s liver it’s doing quite well considering the PSC.

I’m now 29 and living a fairly normal life. My main symptom is itching and they’ve tried a few things for that, but since I’ve been on Maralixibat for the last year I’ve noticed the difference. There’s always the possibility that I might need a transplant, but there’s a lot of research and drug trials into PSC and the liver where they’re looking at either slowing the progression of the disease or finding a treatment that works so a patient doesn’t need a transplant, so that’s a good thing.

If you’re diagnosed with PSC look at all the options. Communication is the most important thing. Talk to your family about it and don’t be afraid to ask any kind of questions of your consultant, even if you think it might sound stupid.

The post Kim’s story: “I was determined not let my illnesses rule my life” appeared first on British Liver Trust.

At uni I played a lot of sport with an active social life, but noticed I needed naps to keep up with my friends. I also had a lot of pain around my ribs, and the only way to lessen it was to sleep it off. I to my GP who ordered an ultrasound and gastroscopy, but not a blood test. Nothing was found, so I just coped and dealt with the symptoms.

After uni, I took a year out, travelling and working in a summer camp. The rib pain got worse particularly after eating fatty foods. I also started throwing up every other day, developed an issue with my bowels and the fatigue was limiting me in what I could do each day.

I went back to my GP in May 2019, and after I listed my symptoms he immediately ordered wide-ranging blood tests which showed my LFTs were raised, and an ultrasound revealed that my liver was a bit funky. I was referred to a hepatologist and diagnosed with PSC and Crohn’s Disease. It took a while to sort out the Crohn’s medication, first steroids then immunosuppressants, and I was going to the toilet three or four times a day with soft stools. However, there was no pain and as there was nothing else medically wrong with me, I wasn’t worried.

By 2020 my diet was very low fat, low fibre and low starch which was annoying and mentally draining, but my partner was really supportive and did whatever was needed to produce a good meal. I gradually started getting more pain from fatty foods now even though I was being so careful.

Urso acid helped a lot

In 2022 I was referred to a consultant at King’s and prescribed 750mg of urso acid daily which helped a lot. My weight had initially gone up due to the steroids but in 2024 it started going down and I was getting more tired. My eyes became yellow in June and by August my skin was too, and I didn’t even have the strength to carry a shopping basket. I emailed my consultant who told me to go to A&E for antibiotics querying a cholangitis infection. I was immediately admitted, the first time ever, staying on the ward for seven days. It was really tough mentally being in hospital, but the staff and my friends kept me going! Luckily I didn’t feel too bad and escaped to the park in the afternoons.

After a couple of weeks tests showed I had blocked bile ducts with diffuse strictures and my liver was cirrhotic – a transplant was the only option. It was a lot to take in because I’d previously been doing so well, but my transplant coordinator was lovely and talked me through it and let me feel feelings. A social worker was offered, I didn’t think I needed it then but I’ve since been in touch because I realised I could do with some help mentally. After a nerve wracking couple of weeks, undergoing all sorts of tests, I was accepted on the list on 10th September 2024. On leaving hospital I moved back with my parents because I was feeling quite weak and couldn’t manage basic daily tasks by myself.

Over the next few months I was in and out of hospital quite a few times, the first time due to a raised temperature. Then I got ascites and was given water tablets to treat it. The next time I had a minor case of Covid and my spleen was enlarged and my gallbladder had filled up so much that it had dropped below my ribs, so you could feel the outline through my skin! An MRI revealed a blocked bile duct, so a stent was put in during an ECRP. That was quite scary because I’ve never been under general anaesthetic before, but it helped and my gall bladder got a lot smaller and moved back up into place and I could go home.

When I was first put on the liver transplant list I was optimistic it would happen soon, but as I’ve been classed as ‘stable’ since December 2024, it’s likely to be a longer wait.

Then one night I woke up with an intense pain in my right side and my parents took me to A&E. It was a cholangitis infection and I was put on a morphine drip. The stent was replaced but I got quite a bad infection afterwards. I saw the word sepsis in the doctor’s report which frightened me, but they managed to get it under control after a day or two and I haven’t been in hospital since. In total, I had been an inpatient for nine weeks over the four-month period, and some of the staff were calling me their VIP!

By this point I’d lost nine kilos, felt very weak and was sleeping a lot. My diet was very restricted and I wasn’t able to eat much anyway because my throat was so dry because of the antibiotics and I’d lost my appetite due to the jaundice. I was referred to a nutritionist, but the main thing that helped was having the stent put in and suddenly starting to want food again felt great. I’d lost lots of muscle mass so I was eating carbs and protein every few hours and gained back 10kg over eight months.

It’s a long slog and I need a lot of help from my family, but each month I have a little more energy and feel less weak. I’m still very ill and can’t work; I rest, read a lot and set myself small, achievable goals, even if that’s just going out for a slice of cake or a short dog walk.

When I was first put on the transplant list I was optimistic it would happen soon, but as I’ve been classed as ‘stable’ since December 2024, it’s likely to be a longer wait. I stare at my phone, waiting and feeling sad and sometimes frustrated that I’ve not got it yet and the longer you wait, the more time you have to overthink things. I’m having talking therapy to process everything and it’s helping me feel less tense, working through all the emotions that the wait list brings. I can’t exercise, but the transplant coordinator recommended walking and I’ve been trying some basic yoga.

Support groups

I did a tour of the liver wards and intensive unit, knowing that I’ll recognise the space when I wake up post-transplant helps. I’ve also been in touch with some transplant recipients and it’s been good to hear about their lives post-transplant. The British Liver Trust’s Pre and Post-transplant and Under-40s support groups are amazing – we sit laughing about jaundice and talking about different remedies such as cold showers. My friends and family are really supportive, and the groups give me a chance to talk to people going through similar situations, rather than balling myself up.

Seeing their daughter in hospital scared my parents a lot. It’s the first time any of their children have been ill, but we are learning the language and life of hospital and severe illness together.

I keep an eye on symptoms without going overboard because that’s not mentally helpful. I check my temperature once a day, try to eat well and do what I can – even if it’s just going out for that slice of cake. I also book things with friends, so I have something to look forward to, and they’re always happy to adjust plans if I need to. I’ve learned to be sensible about what I can achieve and still have a bit of a life, but as an ambitious, active person it’s a struggle.

If you’ve been diagnosed with PSC, go to the British Liver Trust and NHS websites, don’t Google it. Join support groups, ask for help, and ask questions. I’m project managing my health by keeping a record of all the notes from my doctors’ appointments and I go into every appointment with questions to help me understand more and feel a little bit more in control. Don’t be afraid to tell the doctors about anything you spot even if it turns out to be nothing and while you’re waiting for the transplant just live your life as best you can.

The post Katie’s story: “While you’re waiting for the transplant just live your life as best you can” appeared first on British Liver Trust.

I received my liver transplant on the first day of spring 2014; it felt very apt. I had always been the fittest person that I knew, with family demands, a full-time job, as well as being a District Commissioner for Guides and a kayak coach. So when I started to feel tired I was concerned that I had a heart condition. Several years later, and a move from Buckinghamshire to the North, I was finally diagnosed with Primary Sclerosing Cholangitis (PSC). Four years after that I was the lucky recipient of a new liver.

I went to the British Transplant Games in Cumbria the following year – I had practiced badminton in the back garden with the help of my husband and a northerly wind! I was rewarded with a bronze medal for badminton and a silver for volleyball – something that I hadn’t played since school.

Each year since then I have tried a different sport – something outside my comfort zone, like the 100m, then the 200m, shot putt and javelin – it was all great fun! I rediscovered tennis which, again, I hadn’t played since school. I turned up to the tennis tournament with a few coaching sessions and lots of misplaced optimism. Since then, I’ve continued with the coaching and it’s one of my hobbies – I play at least three days a week.

On the strength of my medals, I have been selected to represent GB&NI in tennis and athletics, and last year we went to the World Transplant Games in Perth, Australia. What an amazing opportunity and experience, who would ever have thought that something as negative as a rare liver disease/transplant could lead to such a truly fabulous experience.

I won a gold medal in archery at the 2024 British Transplant Games in Nottingham. I really didn’t expect it but was delighted to win it. I was equally delighted to win a European Gold medal for pétanque and a European silver medal for tennis in the European Games in Lisbon, held a week before the British Games.

Now back down to earth, the British Transplant Games are a fantastic way of meeting people who share your experiences. I know at least four other people with my rare disease and they all have the same strength and determination to succeed. I would hate to be defined by my condition, so the Transplant Games have given me new ambitions, challenges and lots of shiny medals.

The British Liver Trust is a great source of information for people living with liver disease. I was very pleased to be part of its Online Support Group that included pre and post-transplant patients. The pre-transplant patients found it invaluable because they were able to see what the future could hold for them, while the post-transplant patients were delighted to talk about their experiences. It began during the Covid lockdown and has continued, it helps people feel less isolated and more knowledgeable and, as we all know, knowledge is power.

The post Andrea’s story: “The Transplant Games have given me new ambitions, challenges and lots of shiny medals.” appeared first on British Liver Trust.

I was 29 years old when I received the diagnosis that changed my life.  I had never smoked, nor been overweight or more than an occasional drinker.  So, when liver disease was first mentioned to me, it was a real shock. I can vividly recall when the consultant confirmed my diagnosis. He was matter-of-fact when he said “you have the worst type of liver disease because there is no cure, or treatment except liver transplant. It attacks the bile ducts in the liver and affects the liver itself. It also puts you at much higher risk of several aggressive cancers, and if you get bile duct cancer, we won’t give you a liver transplant”.

Primary Sclerosing Cholangitis

The liver disease in question is Primary Sclerosing Cholangitis, helpfully abbreviated as PSC. It is an auto-immune condition, and probably linked to ulcerative colitis, another auto-immune condition I have had since I was a teenager. It was through routine monitoring for my colitis that a member of the gastro team noticed my liver blood tests were abnormal. “Have you had a heavy night out?” she asked.  It was a few months later, and after a couple of MRIs, that my PSC diagnosis was confirmed.

Of course, I turned to Google to find out more about the condition. What I found sent me into a spiral of despair. I read that the average life expectancy of a PSC patient is 8-12 years from diagnosis, unless life can be extended with a liver transplant. Suddenly, the life I thought I had ahead of me was turned on its head. This timeline would mean I would be dead or having life-changing surgery by the age of 40.

The question I’m commonly asked by friends is: “Why don’t you have a liver transplant now?” There is a common misconception that: (i) organs are readily available; (ii) transplants are straightforward; and (iii) they are a magic cure. PSC returns post-transplant in approximately one third of cases. Rejection issues are common post-surgery and life expectancy is reduced afterwards. That said, when my time comes for a liver transplant, I know I will be beyond grateful for every minute of extra time it could give me with my family.

While this diagnosis took some time to get my head around, I continued for several years with regular scans, blood tests and appointments. But life continued – I got married, was promoted at work and continued to live as healthily as I could.

Obstetric cholestasis

I became symptomatic with PSC in my first pregnancy. I experienced liver related complications, including Obstetric Cholestasis, which carries a risk of stillbirth.  I also started to itch like crazy! I was lucky – although I was induced early – Chloe was a healthy baby. The pregnancy had taken a toll on my liver though, and I suffered liver infections (cholangitis) and had a few surgeries (ERCPs) after she was born to open some blocked bile ducts. At this point, I gave up my career as a solicitor in London.

With my second pregnancy, I became jaundiced and dangerously unwell. I was admitted to hospital and my daughter was induced seven weeks early. I remember my (amazing) obstetrician saying: ‘Usually all our focus is on delivering the baby, but it has got to the point where we need to get this baby out for your own sake’. Alice spent some time in neonatal intensive care (NICU), but otherwise she’s perfect. Needless to say, we are not having any more children!

I have an annual surveillance colonoscopy for bowel cancer, but the risk of liver cancers are what makes me most anxious, due to the poor prognosis and difficulty in diagnosis.

As I write, I am having my second liver cancer “scare”. My first was in 2021, when I received a phone call out of the blue from a registrar who told me some lesions had been detected in my routine MRI and they could be cancerous. I would need a CT/PET scan and a liver biopsy.

These tests took longer than expected.  I hadn’t appreciated the delay between each test while the reports were written up and then waiting for my case to be discussed at the multi-disciplinary meetings. Fortunately, the conclusion after these tests was that there was “no convincing evidence of cancer”, however these lesions have been kept under review with three-six monthly MRI scans and ultrasounds.

This year, one of these monitoring scans showed that one lesion has started growing rapidly again and could be liver cancer (HCC). I am currently waiting for results of further tests. All I can do is attend my appointments and remain positive. Hopefully, the benefit of being monitored regularly means any cancer will be spotted at an early stage where it is treatable.

Anti-itching clinical trial is a positive

My liver is now very scarred, and I have the start of cirrhosis. The itch has been my most debilitating symptom, making it difficult to sleep at night.  Not ideal when little ones are waking you up as well!  However, since I joined a clinical trial for a new anti-itching drug in January 2024 I’ve been getting four consecutive hours of sleep a night, which may not seem like much, but it is a huge improvement for me!

With the benefit of more sleep, I now have the energy to use my experience with liver disease for good, and help improve liver care for others. I found the British Liver Trust through social media and have used the website to find out about diet and cirrhosis. I then answered their call for patients to speak at a conference entitled Improving surveillance for hepatocellular carcinoma in the UK in April 2024. I spoke as a patient advocate to 150 clinicians and talked about the importance of HCC surveillance and having a clear management plan.

I’m currently on the patient panel for a number of new projects and research groups. I’ve been invited onto the South-East London Cancer Alliance as a patient rep and am working with my medical team to progress a blueprint for excellent care for PSC. I support PSC Support, an amazing charity for those affected by PSC, and through them I keep up to date with accurate information about my condition.  I’m also currently on my third clinical trial/study.

PSC has changed my life.  But, with so many clinical trials ongoing, there is hope on the horizon.

The post Maria’s story: “I now have the energy to use my experience with liver disease for good, and help improve liver care for others” appeared first on British Liver Trust.

I was fine, working ten-hour shifts six days a week as a retail manager, having a pretty social life then, at the flick of the switch, everything changed.

I started feeling quite unwell in January 2022, had no energy and couldn’t do more than five minutes of movement without getting tired. When I couldn’t get upstairs and had to sleep on the sofa, I asked to be signed off sick from work. My GP thought it was Covid, then a chest infection but finally told me to go to A&E because, quite honestly, she didn’t know what was wrong. This all happened in about seven days and was very scary.

When I got to A&E at Leicester General and the nurse put a canula in my arm, I knew I wouldn’t be going home that night. I was in for two days and constantly on blood infusions because I had no blood left, but they didn’t know what was wrong either. A colonoscopy and an endoscopy were booked for January 28^th – I went back to have those done and left a different hospital six weeks later.

I was in and out of comas during that time and all I know is what my family told me since. The doctors found a mass internal bleed and my liver had pretty much stopped working. There was no blood going through it, so it was all backing up and trying to find a different way to get out. I had a cardiac arrest at one point and my family came in at 10 o’clock at night to say goodbye because the hospital didn’t think I would make it. I was in an induced coma, but my fiancée said that I woke up when they arrived. When my dad came to my bed – I started to move, then I grabbed my mum’s hand. When I saw Emma I tried to get out of bed and wanted to go home.

A team from Leicester Royal Infirmary was now coming in to treat me because I was too unwell to be moved. They gave me every procedure they could think of – they glued me, put a balloon in and banded me. Once I was stable I was moved to the Infirmary and the team put a stent in my liver which is still doing a very good job of keeping the blood flowing. Apart from a few days, I was in intensive care and in and out of induced comas, so my memories of that time are patchy. I only really remember the hallucinations and was utterly adamant they were real.

The first one was the same five-minute scenario on a loop. I was convinced I was in an old Victorian hospital in the past, there was a woman in the corner talking about sandwiches and a nurse kept coming round to me. Then I was transferred to a futuristic hospital where I was in a pod that was healing me.

In the second hallucination I heard songs that didn’t exist but was adamant they did and was trying to find them online. It’s bizarre when you’re telling people about it and they think you’ve gone mad.

The third hallucination was the worst. I was in intensive care and convinced the person next to me was getting better because he was taking my life from me. I was shouting at doctors, but no one would listen and was so convinced I was dying that I rang my fiancée to say goodbye. I can only imagine what that must have been like for her. She contacted my parents and said that if I rang them to ignore me because I was hallucinating. Eventually the hospital managed to calm me down and the next morning I apologized to everyone and was fine after that. It must have been so scary for my family, travelling to all these different hospitals, seeing me at my worst and trying to be strong. I don’t know how they managed to deal with it.

We knew it was the liver, but didn’t know what was wrong. When I got to Queen Elizabeth Hospital in Birmingham I knew I’d get all the answers

By now though, we knew it was the liver but didn’t know what was wrong with it. When I was told I was going to Queen Elizabeth Hospital in Birmingham I didn’t want to because I didn’t know how it all worked, but once there I knew I was in the right place because they’re one of, if not the best, liver hospitals in the country, maybe the world. I knew I’d get all the answers there.

It was crazy but I almost started to feel that I was back to normal now. I could shower myself, eat and go to the toilet on my own, be up and about talking to the nurses and making them laugh. I made quite a good friend on the ward too and we’d go down to the shop together or for a walk.

When I first saw the consultant he didn’t talk to me like I was a doctor which I really appreciated because I wouldn’t have understood a word. He said: “I’m pretty sure you’ve got primary sclerosing cholangitis,” then booked all these tests, came back the next day and said: “I told you!”

It was comforting that he was quite blasé about it, but he also explained it incredibly well. He said I had stage 4 cirrhosis, that psc was autoimmune, the only option was a transplant and sadly I couldn’t have a living donor which my fiancée had wanted to be for me. I was also diagnosed with ulcerative colitis of the bowel, so will need a colectomy a few months after the transplant and a stoma bag for life.

I finally knew what was wrong and that life-saving surgery would fix it.

I wasn’t concerned about the surgery because I’d be in the best hands, but the hardest thing to get my head round was that to save my life, someone needed to die. I was in a room by myself at that point and remember sitting at the window and staring out of it for hours just watching people. One of my friends who has now had a transplant said: “It’s their wishes and you carry a piece of them with you to look after.” That made it a little easier.

I was put on the transplant list in July 2022, but then taken straight off because the glue used to stop the bleeding had got into my blood stream and attached itself to my heart. I was told I would need a heart bypass before the transplant to remove the glue. This would limit the donor livers I could receive because the surgeons would need to take into account additional time for the bypass, but then my consultant personally put me on the list where I’ve been for just over a year now. The doctors now think the glue has gone which is good.

I now have clinic every month or so, do physio and my doctor calls me regularly, so I’m constantly updated with the process and what they’ve decided. They’re always trying to make things easier and better for me which is a massive positive because you’re not left in the dark.

My liver is heavily scarred and I will always need a transplant, but some days I almost forget because I feel so well

Healthwise, I feel pretty good – I’m one of the lucky ones and feel for anyone who isn’t. My liver is heavily scarred and I will always need a transplant, but some days I almost forget about that because I feel so well. Other days it’s all I can think about. I almost just want the surgery done now and get to a new normal. I’m dealing with it well, but I’m sure that will change when the phone rings – I’ll be panicking then!

I’m still signed off work. My consultant said if I felt well enough, often enough, I could potentially go back into part-time work. Most people would want time off, but when you’ve had a year-and-a-half, it gets a bit boring. Having that purpose again of getting up and going to a job, even if it’s just a few hours a week, would really help.

It’s pretty much the same thing every day at the minute. I try to do exercise because I know it’s very important that my body is in the perfect state for the surgeon. I read, find myself playing Play Station quite a lot, go for walks and look after our cats. I keep on top of the housework and really enjoy cooking so that’s a bonus when Emma gets home from work.  She’s working so hard because I can’t, so I do what I can to help.

A liver disease like mine can affect your appetite but I’m eating as much as I ever have. I just need to keep some of it on me because I don’t know where it goes.

Once I’m transplanted I’m really looking forward to working full time and going abroad on holiday again. We can start planning our wedding again too. It’s on hold because knowing my luck I would get the call when Emma was walking down the aisle!

Deciding whether to donate a loved one’s organ is very difficult, but it’s a conversation people should have if they can. And if you know it’s the wishes of the person who sadly passed away, then please do honour them.

Your gift, generosity and selflessness will save my life.

Ben received his liver transplant in April 2024. Find out more about his transplant journey and recovery

The post Ben’s story: “A medical team gave me every procedure they could think of – they glued me, put a balloon in and banded me” appeared first on British Liver Trust.

I’m 32 and a dad of two, married with a pretty relaxed lifestyle, but I do have PTSD, anxiety and waves of depression. What’s always helped me through this and general life is fitness. Being a fitness and mindset coach isn’t just a job, it’s who I am.

The signs of liver disease had always been there for me, but I didn’t realise they were symptoms of anything. I downplayed the general fatigue and itchiness, thinking I was probably under the weather or a little bit tired and although my wife had been pointing out for a number of years that I looked quite yellow, I’d just say: “Don’t be daft”.

Then when I was 27/28 I kept getting chronic nosebleeds. My doctor suggested blood tests and one thing that continually cropped up was raging LFT levels. After a lot of further testing, being prodded and poked, sleepovers in the hospital for days on end, missing birthdays and family occasions I got a diagnosis of primary sclerosis cholangitis and another nugget of gold – a whopping gallstone. Also, during the ERCP (endoscopic retrograde cholangiopancreatography) procedure they nipped my pancreas and I developed pancreatitis. I was in hospital for almost a week and had two months where I wasn’t working – either I was in too much pain or I couldn’t stay awake.

I hadn’t experienced any pain at all before, or at least none that I could put my finger on. I just thought I might have eaten something that was past its date. Now the gallstone was also causing day-to-day pain and discomfort.

There’s no cure for the primary sclerosing cholangitis and one of the symptoms that I didn’t think would be linked is chronic indigestion. I have medication for that and I’m also trying ursodeoxycholic acid. I could make things significantly worse by poor lifestyle choices so was told I needed to maintain a healthy lifestyle, including regular exercise and a well balanced diet.

The pain from the gallstone can be exhausting

The chronic fatigue is grim though and it’s hard to explain to people that I’m always in pain from the gallstone and at what level it gets too uncomfortable. The pain can be exhausting, but I’m really fortunate that my family are very supportive. I’m a typical bloke – I can bury my head in the sand or be quiet or a little bit snappy, but my wife is the best – she’s good at spotting when I’m having a bad day and my mood is low. She’ll say: “Why don’t you go and lie down and have a bit of a chillout.”

As I’m now more aware of my energy levels I have to be stricter with myself to switch off and recognise that some days will be better than others. Having two children as well means it’s not always a case of stopping and downing tools, you have to plan in advance a little bit.

I try to manage my health through good sleep, exercise and my diet. I’ve always lived by an 80/20 principle – so 80 per cent of the time I eat really well, but I’m human so sometimes I still want a slice of cake or whatever. Over the years it’s been a good balanced diet, but I’m now more aware of the fat content of what I’m eating because my body isn’t absorbing and breaking down food as efficiently as it should. I’m now trialling having smaller meals more frequently. It seems to be going well so far, but I’m only two weeks in.

The surgeon has been very honest and said there’s a higher risk of cancer if my gallbladder isn’t removed, so wants to get it out in the next couple of months. This should also help me manage some of the other day-to-day issues I face with PSC. I’ve got a whole booklet on what could happen and if things were to deteriorate, there could also be discussions around a liver transplant.

I didn’t have a fatty diet so being diagnosed with a liver condition was a shock

Before the diagnosis I didn’t know a great deal about liver disease other than the basics of what you learn in school. When you qualify within the fitness industry you have to learn a little bit more, but it wasn’t overly extensive. My lifestyle didn’t warrant having a liver disease. I wasn’t a drinker, I didn’t smoke. I didn’t have a fatty diet or anything like that, so being diagnosed was a shock, but it’s part of who I am now and I just get on with it. And hope to raise more and more awareness to others in a similar situation to me.

What has been really positive over the last three months is improvements in my blood tests. The jaundice has cleared up, the itching comes and goes and because it’s not so constant I can manage it. I’m quite lucky in that sense. For the next three years I’ll have a check-up every six months and then it will go to twelve, but if anything were to change, I can contact the hospital and they will react to it.

When I was diagnosed I was given some leaflets and was told to visit the British Liver Trust website. I try not to over-Google things but it’s hard not to. My doctor’s been very helpful with any question I’ve had at any point and given me the information I need and constantly signposts me back to the British Liver Trust, which a credit to the service the charity provides.

The post Tom’s story: “Being diagnosed with Primary Sclerosing Cholangitis was a shock” appeared first on British Liver Trust.

I am one of the very lucky ones whose GP was thorough enough to make sure my liver disease was caught early, which means I am currently far healthier than I would otherwise have been.

Way back in 2008 I was feeling a tiny bit more tired than normal so I went to go see my GP who ran a full blood panel just to make sure, as I’d had glandular fever in 2005 at age 15. My ALT on my liver panel was slightly up so she decided to just repeat it in a few weeks and see. A few weeks later it had crept up even more so she referred me to the local hepatology team just to double check.

It took a full year of bloods, ultrasounds, fibro scans and two liver biopsies (the first one was unusable as the sample wasn’t good enough) before my consultant sat me down and said: “I’m very sorry but you have Autoimmune Hepatitis. We don’t normally see it in people your age, but luckily it’s very early on so not much damage has been done and we can get medication started to help control it.” I was 19 years old and didn’t fully comprehend how huge this diagnosis would be.

Unfortunately, my path since then has been far from smooth. It took from my diagnosis in 2009 until 2012 to find a medication that both worked and my body could tolerate. During this time I got incredibly unwell, felt very lost in myself, angry at my body for doing this to me and taking the life I envisioned from me. I will admit at certain points I was a nightmare patient for my team, I was ignoring their advice, didn’t take my medication, drank too much and generally didn’t look after myself. I learnt the hard way that this was not a good idea as it made me really sick, but I just didn’t know how to deal with everything emotionally.

There absolutely is a stigma attached with a liver disease diagnosis and I was given judgemental stares when attending clinic when I was pregnant

The only downside to being diagnosed early on was that I was always the youngest person in the liver clinic which led to lots of stares and whispers and made me feel very self conscious. There absolutely is a stigma attached with a liver disease diagnosis. I heard a lot of “Oh, fond of a drink, are you?” or they jump to drug use whenever I mentioned to people that I had liver disease.  I was given even more judgemental stares when attending clinic when I was pregnant and my son was a newborn as I looked much younger in the face. Quite often people just assume if you have liver disease that it is your own fault. It can definitely make you feel ashamed of your diagnosis and can be very isolating. Liver disease can affect anyone and everyone and it is something I wish was highlighted more, especially in younger people, quite often when I was younger some of the doctors I saw didn’t know how to speak to me or give me the support I needed

I had a further hiccup when I was diagnosed with Primary Biliary Cirrhosis, also in 2012. However, my life changed for the better when I got pregnant, and through the care and support of my liver team at my local hospital, the liver team at King’s College and GP, I had a healthy pregnancy and had my son in April 2013. He gives me motivation even on my worst days to keep going and to be there for him.

Life carried on for a few years, quite a lot of the time one of my liver blood tests was abnormal, the one relating more to the Primary Biliary Cirrhosis but that was just normal for myself, my liver teams and my GP to not panic unless it was really abnormal!

But in 2017 the medication that had previously worked to control my immune system then started to cause my kidneys to shut down so I had to stop it, a biopsy sample showed I had cirrhosis of the liver from the damage done, my Primary Biliary Cirrhosis diagnosis was swapped to Primary Sclerosing Cholangitis and two additional diagnoses of ulcerative colitis and endometriosis were also added in 2017. I was also warned that due to the crossover of the liver diseases, how aggressive they are in me and the damage already done to my liver that I will probably need at least one transplant in my lifetime. Safe to say it was a rough year!

The Autoimmune Hepatitis literally vanished

Then in 2019 I had a minor miracle. I had a liver biopsy and the samples taken didn’t show any evidence of active auto immune hepatitis. It had literally vanished and both myself and my consultant were amazed. Given that at the time I was only on corticosteroids as my bloods had been stable(ish) for a while, it was something totally unexpected.

When the world shut-down due to Covid-19 in 2020 my body decided that it would be a fantastic time to reignite the auto immune hepatitis with a bang and a big flare. I know many people had issues accessing healthcare during this time but all my medical teams and GP surgery were fantastic and I felt safe and cared for even when I had to come into hospital for ultrasounds, fibro scans and another liver biopsy.

Based on this biopsy result showing that both the auto immune hepatitis and primary sclerosing cholangitis were both active again, one of the newer consultants on my hospital liver team decided to re-try a medication I’d had before but had issues with it causing blood pressure issues and migraines. This time it not only worked on my immune system, the fact that I am also on beta blockers for another auto immune condition in my thyroid means the side effects I’d had before weren’t present. At the start of January 2021 I had a full panel of liver blood tests that were within the normal range for the first time since 2015.

I am due another liver biopsy, which will be my eighth one, by the end of 2023 as it’s been decided that my blood tests don’t always reflect what is going on internally so it’s always better to get a sample. It’s a running joke that I am requesting a certificate and crown when I hit 10 biopsies, both for bravery.

Currently my bloods are still stable and I’m healthy-ish. I do have other auto immune and medical conditions that I have to deal with on a day-to-day basis, but my liver diseases are being well managed and are behaving themselves for now.

I will be forever grateful for the early diagnosis

I know that I’ve been through a lot since I was first diagnosed in 2009 but am very aware that without my GP at the time being so thorough and pushing for the liver team at my local hospital to see me, I could be in a very different position. I will forever be grateful to her for enabling me to be diagnosed early and also for all the care she gave me as a patient, especially in those early days when I was struggling emotionally and dealing with so many different medications and their side effects.

I am also very lucky that the consultant who first saw me and diagnosed me back in 2009 is still a major part of my liver care team at my local hospital. He and his colleagues have kept me as healthy as possible and have put up with a lot of late teenage/early 20s emotions from me!

Early diagnosis is definitely key and it’s something I do feel strongly about. Recognising symptoms early on is key and being persistent even when you get told “you can’t possibly have this, you’re too young”. Throughout my journey I have had so much support from not just my medical teams but also my family, friends (the other mums at my son’s school are so lovely) and especially my partner Lewis who is very good at telling me to rest even when I’m not very good at listening to him!

It’s been a long road so far, with further to go but without my GP making sure my diagnosis being caught early I may not have even made it this far.

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The post Lucy’s story: “Without my GP making sure my Autoimmune Hepatitis diagnosis was found at the age of 19 I may not have made it this far” appeared first on British Liver Trust.

Everything I do is with my donor in mind.

Many years ago I was diagnosed with inflammatory bowel disease which led to ulcerative colitis. I had a section of my colon removed and a temporary ileostomy which was meant to be for six weeks but I kept it for two years as it allowed me to rebuild my strength and fitness, and to travel and live again.

My ulcerative colitis led to a liver condition called primary sclerosing cholangitis (PSC). This was treated (unsuccessfully) with meds and in 2018 I was told I’d need a liver transplant.

I carried on running the family businesses during my illness – I would not let PSC beat me. I knew nothing and no one who had been in my situation. As a scooter owner, I’m a member of the Vespa Owners Club and through this I exchanged messages with a chap from the Midlands. One day he posted to say he wouldn’t be around for a few weeks because he was going in for his second liver transplant. Finally I’d found someone who would understand where I was! Having him and his wife there to answer my questions helped me prepare for transplant.

I received the call to come in for transplant at 6.20am on New Year’s Eve and I was blues and twos up to King’s College Hospital. On arrival I was told there would be a delay. I was later told the donor liver was suitable to be split in two – a three-year-old lad was in theatre receiving the smaller section, and I could have the larger section. I told the coordinator that I’d had an amazing life. If today wasn’t my day, no problem. I just wanted them to make sure the boy was ok. I was fortunate enough to go into theatre at 8pm for my transplant.

Shaun waiting for his transplant in hospital

I was in recovery for three months as I had a small leak but I was walking six flights of stairs in the hospital twice a day on cake and coffee runs to the café for my fellow patients.

Shaun celebrated his birthday in hospital after his transplant.

I’d prepared my life so I could semi-retire after transplant. I’ve made an amazing recovery and can now do as much as I did pre-transplant and illness, so I like to give as much back as I can. I set up a support group for pre and post-transplant patients so they have someone to discuss their concerns with and show their families it’s not the end.

My liver coordinator told me that transplant is ‘cool’. She was right. I’m so grateful for what my donor, their family and our wonderful NHS have done for me. Now I’m a totally different person. I’m living the life my young donor didn’t get the chance to live, so everything I do is with him in mind.

The post Shaun’s story: “I like to give back as much as I can.” appeared first on British Liver Trust.

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