When Michelle’s dad was seriously ill in hospital, she was concerned about the lack of communication and information she received from the medical staff. The British Liver Trust’s Nurse-led Helpline helped explain the diagnosis, symptoms she should look out for and the care that should be in place. Thank you for sharing your story, Michelle

My Dad had always been a social drinker until he got Covid twice which developed into long Covid. With being home alone all day, his drinking became more severe.

He went back and forward to the doctor and was in hospital a couple of times. The admissions must have been linked to his liver, but I don’t know what tests they ran because six months later he was gone.

Dad was then admitted due to a high heart rate and his partner and I were told he wouldn’t last the night. I know they have to prepare you for the worst, but they could have said: ‘We’ll see how the night goes’.

Dad got through that night, but was worse the next day. The whites of his eyes were yellow, there was swelling in his tummy and legs, he was shaking and twitching and was very confused and hallucinating. He had stopped drinking a few days before and the doctors said he shouldn’t have done that without support because it accelerated his symptoms.

Different consultant every time

They drained him and tried giving him Laxido to flush out the toxins, but he kept spitting it out and the doctors said he could end up in a coma without it. He did eventually start taking it.

Communication with the consultants was really poor. Dad was in the hospital for at least a month before we even knew it was cirrhosis and the only way I could speak to someone was by demanding it. It was a different consultant almost every time and having to retell the same story was upsetting.

I contacted the British Liver Trust’s Nurse Helpline because I didn’t understand a lot of the medical terms the hospital used and they were really good in breaking that down. They also explained that his confusion was connected to his liver. I Googled cirrhosis (I know you shouldn’t) and found there were different kinds, so I contacted the helpline again and they were really helpful.

We should have had more information and at least a couple of check-ins from a doctor. They could have told us what symptoms to look out for and when to call an ambulance, but all we had was information I found myself on the British Liver Trust website.

After six weeks Dad was transferred to the local community hospital. They were trying to get him on his feet and walking so he could be discharged, but there was no care in place once he was home and Dad became bedridden because the muscles in his legs weren’t working anymore. No doctor came out to see him and I couldn’t get anything from the GP such as support from district nurses. Dad was just left.

We should have had more information and at least a couple of check-ins from a doctor. They could have told us what symptoms to look out for and when to call an ambulance, but all we had was information I found myself on the British Liver Trust website.

Dad was quite a closed man so never really spoke about what his illness and prognosis meant to him, but did get upset a few times because he felt he was a burden. We hoped that being home might bring him some comfort and his partner got carers in to help, but they were awful initially – they would make his food, but set it where he couldn’t reach it.

Dad’s liver failure progressed and his kidneys were also impacted. He stopped eating and was drinking very minimal. I called the Trust’s helpline again towards the end to ask what we should look out for and anything I could do to get care in place. They were really helpful and gave me a breakdown of what I should ask for. Now the district nurses finally started coming

Sadly, Dad passed away at home in September 2025 – he was only 68.

More compassion 

We needed more compassion than we got. Maybe it was just in my head, but I felt like Dad was treated like an alcoholic who had brought it on himself. Ok, he drank too much and it could have been avoided, but he didn’t choose that life, it was an addiction that he needed help with. I’m now seeing a counsellor for support and while I’m sharing my story to help others, it’s also good for me to get it all out.

I decided to fundraise for the British Liver Trust by running two 10k events. The second race was after Dad had died and was quite an emotional one. Because it was so personal to me, people responded really well and I raised £770.

Cirrhosis doesn’t happen overnight and by the time the symptoms appear the damage can be irreversible. If you suspect someone in your family is drinking too much, it’s a conversation you need to have, even though it’s uncomfortable. We didn’t and if we had said something sooner, perhaps more could have been done.

Look to the health professionals to make sure that you’re accessing the information, help and support that you should be, so your loved one gets the best care. If it’s coming to the end of life, I would definitely recommend the British Liver Trust helpline because that was really helpful for me.

The post Michelle’s story: “I contacted the British Liver Trust’s Nurse Helpline because I didn’t understand a lot of the medical terms the hospital used” appeared first on British Liver Trust.

When you are an alcoholic you don’t think about how much you drink, it’s like a drug and you have to get as much of it as you can. For me, drinking was all part of a social lifestyle – we would all go the pub after work and playing sports, but towards the end I was drinking 10-12 cans a day. Alcohol made me a different person and I’ve only got myself to blame. I wasn’t very nice and didn’t have a proper care for anyone, including my family.

My stomach started swelling in the summer of 2022 and my GP said it was likely to do with my liver. He put me on water retention tablets which helped and sent me for an ultrasound of my liver which showed cirrhosis and I was told I would have blood tests every three months.

Ascites drainage

At Christmas 2023 my children gave me a box of non-alcohol beer and I knew I was drinking too much, so on 2^nd January 2024 I decided to stop. It made me nasty at first, but I got through it.

In June that year I had a blood test in the morning and at teatime the hospital called saying I needed to come back with a bag because I was staying. I walked in and left in a wheelchair three weeks later. I nearly died. Because my stomach was massive I had two drains for the ascites and they took 12 litres the first time. The hospital was good, but it’s not a liver hospital so they had to keep phoning Leeds and putting me on different drugs.

After I was discharged I had to go back for a blood test every week and a drain every month. The drains were done by junior doctors and they put me through that much pain. They took six hours and sometimes I would go in at 9am and they’d only start draining me at 3.30pm and by the time they’d finished and checked me over, I’d be going home at 11pm. I was transferred to Leeds hospital in September and because they have a special liver unit their drains only took and an hour-and-a-half and I didn’t feel a thing.

My liver will never repair itself because I have end-stage cirrhosis

I had a full day of tests at my first appointment in Leeds and they put me on the liver transplant list at first, but after a period of time they took me off that. I had the TIPs operation, which didn’t hurt and I was only in hospital for three days. It’s also caused me to have an umbilical hernia repair.

My consultant’s main concern was the ascites and that has now gone away, thanks to the TIPs procedure and I will have a scan every six months. However, my liver will never repair itself because I have end-stage cirrhosis and I will need a liver transplant in eight to ten years’ time due to the extent of the damage.

‘One won’t hurt’

My legs and my golfing arm are a bit stiff as I haven’t used them in a long time, but the exercises they gave me using a spring that I compress has helped.  Other than that, I feel like a million dollars.

I consider myself a recovering alcoholic now. I haven’t had a drink since the day I stopped and will never touch it again. It would be very unfair to my family and the people who looked after me if I started again. Sometimes people will try to buy me a drink, saying “One won’t hurt” but my friends will either jump in and stop them or I give it to someone else. I only drink soda water now.

If you drink too much you have to accept that you’re an alcoholic to get better and to give up alcohol you have to want to do it for yourself.

The post Neil’s story: “I consider myself a recovering alcoholic and will never touch alcohol again” appeared first on British Liver Trust.

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.

In the summer of 2024, I started feeling more tired than usual. I didn’t have any other symptoms at first, so I put it down to the stress of buying my first house, but then my mum noticed I was napping as much as my two-year-old niece.

My GP surgery ordered blood tests after which a request appeared on my NHS app for further tests because the results were ‘borderline abnormal’. By now the tiredness had turned into fatigue and I’d be in tears at times because I just couldn’t function properly. I called the surgery and the GP I spoke to said it was just my ‘moods’, but eventually agreed to more blood tests and a liver function test. The LFT was 666, when the normal range should be 30-130 and I was immediately referred to the hospital.

My hepatologist explained what the blood tests meant and said they’d try all the non-invasive tests first to rule out more common conditions. Over the next few months I had countless blood tests, a liver ultrasound, a biopsy, and two MRIs.

The biopsy ruled out autoimmune hepatitis, so then it was potentially PBC or PSC. The MRI showed a narrowing in my bile ducts, but there was also dilation which is very unusual. My consultant put me on ursodeoxycholic acid capsules, but I found them difficult to swallow and dreaded taking them. I’d never been ill before in my life so to suddenly have so many appointments and tests was quite overwhelming. Some days I would be my normal energetic self and then the next day I didn’t even have the energy to get out of bed. I wondered if I’d ever feel normal again!

I found the British Liver Trust as a link from an NHS site because I only go on trusted websites. Along my diagnosis journey when lots of autoimmune conditions were suspected, I basically lived on the British Liver Trust website researching what everything was! When my hepatologist suspected PSC, he gave me a leaflet produced by the British Liver Trust and there’s no other trusted source of information on Caroli disease, so it’s been the only place I refer back to.

Liver resection

I was referred to the surgical team at Leeds at the end of November 2024 and my surgery date was 8th January 2025 where they would remove sections two and three of my liver. They suspected it was Caroli disease, but I wouldn’t get a diagnosis until after surgery.

I was put on a protein diet, had to practice my breathing using a spirometer and keep myself as fit as possible (easier said than done over Christmas). But I stayed positive because I knew there was something I could do now to help myself and feel more in control.

I was surprisingly calm about the surgery, which ended up being a bigger operation than originally planned. I was warned they may have to take more of my liver away and I had about a third removed. I had robotic keyhole surgery and then a large cut to remove the section of liver. I had tubes coming out of everywhere – a catheter, two or three cannulas, two wound catheters, a drain and then other wires and the tube in my nose. I could press a button for pain relief if I needed it so there wasn’t much pain, but the meds made me feel woozy and it almost felt like it was happening to someone else.

The ICU staff were so supportive and kind. They helped me get out of the bed to sit in a chair, reassured my mum and more besides. I was moved to the ward after a few days and discharged a couple of days after that.

Two months after my surgery the surgeon confirmed it was Caroli disease with no underlying autoimmune condition. I was elated as it meant that surgery should have solved the problem and I didn’t have to be on medication anymore.

Recovering at home felt harder because I didn’t have a nurse there all the time. My mum helped me with the blood thinning injections and I was taking laxatives because of the pain killers I was prescribed. We found ingenious ways of doing things like showering with a bin bag to keep my wound dry and using books as steps to help me into bed. I decided to keep a recovery journal to track all the little wins every day and it helped me recognise how big of an achievement simply having a bowel movement or getting out of bed by myself was at the time. I could see the progress quite quickly in the early days until things started to feel like a new normal or went back to normal completely. Now my scars are certainly looking better but I’m still getting used to them!

Two months after my surgery the surgeon confirmed it was Caroli disease with no underlying autoimmune condition. I was elated as it meant that surgery should have solved the problem and I didn’t have to be on medication anymore.

Unfortunately, a follow-up MRI scan revealed my bile ducts were now dilated at the other side of my liver. It was a rollercoaster summer, waiting for another scan and more appointments. I psyched myself up for more surgery but was instead referred back to hepatology in autumn. There’s a question mark over whether I might have PSC or more Caroli disease – my consultant suspects Caroli and they’ll do regular scans with the possibility of more surgery depending on the results.

It’s crazy to think how much has happened in just over a year and I’m trying to view this next chapter as a new challenge to overcome. But recovery is a journey and everything takes time, you’ve just got to be kind to yourself along the way.

I work full time which has definitely been challenging when dealing with the fatigue. It’s better than before the surgery, but it’s difficult dealing with the bad days and trying to accept a different way of doing things just to get through each week. My employer is very supportive and was fantastic when I was off work for my surgery. However, it’s hard explaining to people that some days I’m perfectly fine and the next I’m too tired to work. I work hybrid and often find myself napping in my lunch break when I’m working from home, or sometimes I fall asleep at my desk! Other days my tiredness levels may be OK, but I struggle with brain fog or being unable to concentrate. I’m trying to find ways of managing it but it’s not easy.

Meeting other Caroli patients

With a rare condition, you can feel like you’re getting passed from place to place and no one quite knows what to do with you. You’ve got to fight for yourself and keep chasing for appointments or scans and go to your appointments armed with as much knowledge as possible so you can have honest conversations about next steps.

I’ve contacted the British Liver Trust’s Nurse-led Helpline a few times to provide some clarity on my situation and they’ve offered great advice about what questions to ask at my appointments. Just having someone you can talk to who understands and who knows about medical environments can be extremely useful. I have attended the online support groups too, including a wellbeing session.

I’m always talking to people about my diagnosis as it helps them understand, and me to process my situation. The Health Unlocked forum can also be great to connect with people going through something similar. Unfortunately, I’ve yet to connect with anyone with Caroli disease but hopefully one day I’ll meet someone I can swap stories with!

The post Rachael’s story: The British Liver Trust’s Nurse-led Helpline has offered me great advice. Having someone who knows about medical environments is extremely useful” appeared first on British Liver Trust.

I have lived with depression ever since I can remember and really struggled through childhood and my teen years. It just happened that I stumbled upon alcohol when I was 15, before any kind of therapy or medical intervention. It gave me the lift out of the mire that I craved, and it was instant. Alcohol was my best friend.

I rarely took a break from it for the following 30 years and it was mainly heavy binge drinking at any opportunity, for any reason. Although it gave me that lift, it also changed my character and behaviour significantly. Yes, I was more confident, but I had a temper and my mood would swing at the drop of a hat. Over the years GPs would talk to me about me cutting down or abstaining, but I wasn’t convinced it was a problem and didn’t feel like an alcoholic.

I lost jobs, friends and fell out with family. I had financial woes. I didn’t know anything about making a home or settling down, I would sofa surf, move around, be a bit of a rolling stone. I just couldn’t manage real life stuff, I felt I had no choice, it was all about not being that depressed child.

The most stable part of my life was between 2009-2019. I met the love of my life and had a good set of friends, but I couldn’t curb the daily after-work drinking habit. It got really tiring for those around me, but I would defend my right to a beer. It was more than that though, I was hiding in plain sight, not declaring my addiction or wanting to believe it was one. Eventually my relationship broke down, my life’s biggest regret.

Blood tests

My last three or four years of my drinking were isolated. After work I would get home and drink significant amounts of alcohol. I eventually couldn’t carry on at work anymore, so I left. From 2014 onwards I avoided going for a blood test – I just didn’t want to know what the results might be because I had been given mild warnings from the GP for a good 10 years prior to that about my liver enzymes etc.  Basically, I buried my head in the sand.

In November 2022 I ended up in hospital for a week to detox. I thought I was cured, this is it, new start, onwards and upwards. I only managed a few weeks, then I thought because I’ve done so well so I will get a bottle of whiskey as a pre-Christmas treat. It can’t do any harm.

Well, it did. It triggered off my underlying addiction to alcohol. It got so bad I was up to three litres of vodka, 20 cans of strong cider and a bottle of wine every single day. I stopped eating completely, stopped looking after myself and gave up on life.

Even though I thought I was a lost cause, the guys from the local alcohol service didn’t. In March 2023 they came around, looked at the situation and took some bloods with a plan for a home detox. A day or two later they were back, the home detox was not suitable because my bloods were too dangerous, so I had to go into hospital that evening.

I had all of the symptoms – jaundice, ascites, sarcopenia, vomiting and excreting blood, skin issues and so on, and we didn’t know if I would make it.

The first week or so in hospital I was experiencing psychosis which was distressing. When I came round and was compos mentis I was told I was in liver failure and very poorly. I had all of the symptoms – jaundice, ascites, sarcopenia, vomiting and excreting blood, skin issues and so on, and we didn’t know if I would make it.

I had an ascites drain which took litre after litre of abdominal fluid, after that I got SPB (spontaneous bacterial peritonitis), and sepsis. I was probably in a single digit percentile for survival at that point.

I spent approximately two months in hospital, had a Child-Pugh score of 11 (severe), FibroScan was 75kpa (highest it goes) and was diagnosed with decompensated end-stage liver disease (cirrhosis).

When I went home to recover, there seemed to be a huge void of not knowing what would happen. I was told ‘we will know more in six months at your review’. That naturally took me to the internet which can be a frightening place to research a diagnosis, with a lot of contradictory information.

I became aware of the British Liver Trust in hospital and was given leaflets with helpful information and resources etc.  Then I checked it out online and on socials to understand the jargon and read people’s stories. Knowing there is a vast community out there with similar stories is a great comfort, and the information available is easy to understand on the BLT website.  It made me believe I could begin to recover and reclaim my life.

Learning to cope

By joining an online liver disease community I quickly became more at ease and made some great friends. It helped me learn to cope, and speaking to others who had been living with the same diagnosis for many years was a great comfort.

On discharge I had been prescribed Rifaximin, Lactulose, Spironolactone, Carvedilol, Co-Trimoxazole, Cyclizine, Omeprazole, Folic Acid, multivitamins and Fortisips. However, one-by-one and review-after-review my medications were whittled down, my imaging showed positive changes and my bloods were consistently in range. My liver is compensated again and my Child- Pugh score has gone down to 5 (mild) and now I am completely med free. I have a six-monthly ultrasound and bloods for monitoring purposes and am currently taking part in an HCC study which aims to improve surveillance methods, early detection and diagnosis of liver cancer in people with cirrhosis. I can hopefully live out a full life without transplant. A life of living.

Eventually I also got talking again with my former partner and we’re now close friends. She and my friends have helped me more than they know through my sobriety and recovery and I owe them the world.  I just wish things had worked out differently. I’m especially grateful to my mum, for without her love and rock solid support I don’t think I would have survived. Going forward I would really like to work in the addiction and recovery field and leverage my lived experience into something positive and be an advocate for people with ARLD.

If my story sounds familiar to yours – acknowledge that you have a problem. Don’t bury your head in the sand as long as I did.  Be proactive in your health and get those bloods done.  Seek help and self-refer or ask your GP to refer you to your local alcohol and drugs service – people that will listen. And request a FibroScan and ultrasound.

In sobriety, take your time with recovery, one day at a time, do not clutter yourself with fancy ideas, hobbies or schedules that are unmanageable in the beginning.  Do simple things – walk, stretch, eat healthily, journal, appreciate nature and look forward to quality time with family and friends.  Clear your mind and your new path and gradually build up your life.  There’s plenty of life left to give.

I’m now 47 and have been sober since 28^th March, 2023, the day I went into hospital. It’s proof we can turn it around from the most dire situations. Connection, not isolation, is the key.

The post David’s story: “Acknowledge that you have a problem with alcohol. Be proactive in your health and seek help” appeared first on British Liver Trust.

When I was just eight years old I was taken to A&E because I was passing blood in my bowel movements. I was diagnosed with ulcerative colitis and autoimmune hepatitis, and was very lucky not be physically affected by it – except for the hospital visits, I lived my life the same as anyone else. My doctors said I was a quite a rare case and my consultant even did lectures and presentations about me at university. I’m now 30 and it’s still unknown why I have it when no one else in the family does.

Because I was so young when I was diagnosed I didn’t really understand autoimmune hepatitis and because I didn’t have symptoms, I thought I didn’t need my medication. From the age of 12/13 I started taking it as and when and would flush the rest down the toilet. At 16/17 I decided I was mature enough to deal with it on my own and went to hospital appointments without my parents. I also started drinking with friends. How very wrong and naïve I was.

My consultant tried to tell me what would happen if I didn’t take my meds. He took me to the liver ward and walked me round people who were severely poorly, but it didn’t make a difference. I thought it would never happen to me, but then I was diagnosed with cirrhosis of the liver (micronodular) and was placed on heavy steroids and immunosuppression. I didn’t like the feeling of being hungry all the time and the weight gain which the steroids caused, but I did take my meds most of the time as my parents would watch me every morning and started offering rewards, such as presents, for taking them too.

Blunt consultant

When I was transferred to the adult clinic my new consultant was as blunt as possible, saying it was more dangerous for me to take my medication as and when than not at all, so he took my tablets away completely. Eventually it started to click that I should take them, but I don’t think my consultant was comfortable enough to allow me to do that. Plus, I wasn’t getting more scarring on the liver, so my body was maintaining itself.

Fast forward to my mid-20s and I had also accumulated non-alcohol related fatty liver disease, caused by the increased appetite from the steroids. Because I also had irritable bowel syndrome, I was referred to a dietician who placed me on a low Fodmap diet and advised me to go lactose free so we could find out what foods triggered it. Everything had to be cooked from scratch and I lost six stone and after seven years of trying to conceive, I fell pregnant. I gained three stone during the pregnancy, but the good news was that my bloods were within perfect normal range. After I had my son, I lost 1.5 stone, but then my results started to creep back up again.

Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

Just after my son’s first birthday I became pregnant again and had the same weight gain and perfect bloods during the pregnancy, with weight loss after the birth and results creeping back up.

Over the years I have had flare-ups but remain off medications. My sons are now two years old and six months old and my spleen remains enlarged (it went back down after my first pregnancy), my fatty liver remains and my AIH is very much active. Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

I am currently waiting to hear if I will go back on medication for the AIH. I have been very clear I do not want steroids because of the weight gain, but I will take the immunosuppression which takes longer to kick in.

Body in ruins

I find it hard because a lot of people, including my family, don’t know what it’s like for me or what having autoimmune hepatitis really means. Not once as a mature adult have I been asked about any therapy so I can talk about how I feel.

When you’re a child yourself you don’t realise what’s going on but looking back, I do regret a lot of it. My body is in ruins and I’m only 30. If only I had taken my condition seriously when I was younger, I might not be in this situation. Now I have children of my own I’m committed to being better because I want to be around for them. I worry that I may have passed the AIH down to them, but they can’t be tested for it until they’re older.

If you’re diagnosed with liver disease, stay strong and remember it’s about how you treat yourself and your body that impacts your life later down the line.

The post Nadia’s story: “My consultant tried to tell me what would happen if I didn’t take my meds, but I thought it wouldn’t happen to me” appeared first on British Liver Trust.

I had no symptoms of liver disease other than infrequent periods, hair loss, and some spider veins on my arms. When I visited the GP about these various issues, nobody raised the possibility of liver damage. It wasn’t until a routine blood test for my lupus flagged an elevated liver enzyme that I was sent for a liver ultrasound and then a biopsy.

Being diagnosed with AIH and cirrhosis at a young age was bewildering. I felt alienated amongst my peers, who were finishing university and pursuing their careers without much thought about their health. There was nobody who I knew going through similar health problems of such a serious nature. I began to doubt my body; how could I appear so healthy on the outside, whilst everything was going wrong internally?

This sense of isolation and insecurity continued to some extent throughout my early twenties, when I experienced repeated flares of AIH. As I started immunosuppressive medication, my hair began falling out much more and I ended up having to wear wigs. Aged 25, I suffered an esophageal bleed and was placed on a variceal banding programme to avoid reoccurence.

As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact.

Around this time, I had something of a mindset shift. I considered myself very lucky to have survived a bleed and despite having a period of decompensated cirrhosis, I was able to recover back to being compensated. I realised that life cannot be taken for granted, and I made a commitment to make the most of each day whilst I am healthy enough to do so.

AIH has opened so many doors for me. I have volunteered with the British Liver Trust for many years now, and am part of the Patient Advisory Group (PAG) who provide opinions on key issues impacting the charity’s work. I’ve also been lucky enough to volunteer as a patient representative on various research projects to improve the quality of life for liver disease patients. During COVID, the Trust established a Young Persons’ Zoom meeting. It was so helpful to be able to chat to others with similar experiences to mine, particularly when most of us were shielding.

As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact. Besides the medical fun and games – the fatigue, infections, banding and bruises – there is a really big impact on relationships (how to mention on a first date that you might need a transplant?), career choices (will I be able to work remotely if I’m fatigued?), and body image (despite its ugly thread veins, moonfaced cheeks and bloated stretch marks, I think my body is truly amazing). When I turned thirty, I was told that it would be incredibly risky and unlikely for me to become pregnant in my current state – and I couldn’t have IVF, either. This was another turning point, and I felt very sad for many months.

As part of processing this, I decided to write a book (‘Get Well Soon’, available on my website www.kirstymills.org) about my experiences with chronic illness to raise awareness of autoimmune conditions and also to reduce stigma around liver disease. It’s the book I wish I could have read when I was 20 and scared about my new diagnosis. Liver disease is not fun, and it’s not pretty, but it’s also been the making of me as a person, and I’m grateful for what it has taught me.

The post Kirsty’s story: “Liver disease is not fun or pretty, but it’s also been the making of me, and I’m grateful for what it’s taught me.” appeared first on British Liver Trust.

Despite some pelvic girdle pain, I had had a relatively smooth first pregnancy until a few weeks before the birth of my son.

I mentioned that I had not gained any weight and was becoming increasingly thirsty at several appointments with my community midwife, but was told that was ‘normal’. However, the thirst became excessive, I was drinking six to eight litres of water a day, with at least two of those being at night and my thirst was never quenched.

Approximately two weeks prior to delivery I had persistent right upper quadrant pain alongside vomiting, which again I was assured not to worry about. I was told the pain was due to Braxton-Hicks and that vomiting can occur in the third trimester. I also felt lethargic and uncomfortable, and lack of appetite which caused me to lose 3kg in two weeks – all of which I believed was due to being heavily pregnant.

Although I am a nurse myself and felt as none of this was normal, I believed and trusted the maternity services and professionals.

Six days before the birth, I attended maternity triage due to increasing right upper quadrant abdominal pain and vomiting. I had my observations taken, CTG monitoring of the baby and had a cervix exam to check if I was in labour. I mentioned all of my other symptoms, but was quickly sent home as their only concern was whether I was in pre-term labour or not.

On the following Saturday I stood in my mother’s kitchen and cried as I felt unwell, uncomfortable and didn’t know how I was meant to continue for another four weeks. Later that day it was noted my eyes may have been a slight yellow tinge, but I was so exhausted I went to bed. I didn’t sleep very well that night – I knew something was wrong but I didn’t know what or how serious it would be.

Jaundice and vomiting

I got up early on Sunday morning and immediately started projectile vomiting. I hadn’t felt my baby move and couldn’t get them to move and I was jaundiced. I immediately rang maternity triage, and unfortunately was told to monitor baby’s movements for an hour and call them back if I was still concerned – the fact I was jaundiced and vomiting didn’t seem a concern. I wasn’t happy with that and called back 20 minutes later to say I was coming in.

The midwife who greeted us at triage knew something wasn’t right and immediately put me on the CTG monitor. The monitor showed my baby was in distress and their heartbeat was dropping. The emergency buzzer was pulled and within 45 minutes of arriving in the car park, my baby was delivered via emergency C-section.

Due to the seriousness of the situation, I was put to sleep for the C-section and my partner wasn’t allowed to be present. Everything happened so quickly and I was scared I would wake up to no baby. Luckily, my son was born relatively healthy – he was transferred to neonatal intensive care for minimal support and care, where he stayed for six days.

However, things escalated and were so much worse for me than we had ever imagined they could be… I had developed Acute Fatty Liver Disease of Pregnancy, a rare but life-threatening problem. It took me several hours to wake up from the anaesthetic and things weren’t right. Not only was my liver failing, but also my kidneys. I had also developed pre-eclampsia despite a normal/low blood pressure throughout pregnancy.

My blood wouldn’t clot due to the liver failure, so I become one big bruise and a very difficult patient to get daily blood tests from.

I was very quickly transferred to Intensive Care (which happens to be where I work). I have no recollection of the next three days, the last thing I remember was being put to sleep in theatre. One thing I do remember was being spoken to by a liver specialist who stated my bilirubin was so high that they had discussed my case with a specialist liver unit as I may need a liver transplant.

Fourteen hours after delivery, I was taken to the neonatal intensive care unit to meet my baby, which sadly I do not remember, but luckily I have videos and photos to see that moment. My baby’s gender had been kept a surprise throughout pregnancy, and I do not remember the moment I found out he was a boy. For the next five days I was wheeled down to spend the day with my son, with an intensive care nurse to care for me.

My blood wouldn’t clot due to the liver failure, so I become one big bruise and a very difficult patient to get daily blood tests from. I had so much fluid in my legs – from my toes to my hips – that even just moving was difficult.

The following Saturday, whilst still a patient in intensive care, I noticed new bruising, pain and swelling on my left lower abdomen which was initially dismissed by obstetric doctors, however the intensive care doctors investigated. My haemoglobin had dropped to less than half of the normal value, so I went for an urgent CT scan. The CT scan showed I had blood in my abdomen, so obstetrics were contacted and I was wheeled to theatre urgently. I had emergency surgery to remove almost two litres of blood from my abdomen that had accumulated due to a small tear in one of the abdominal muscles. I received multiple blood and platelet transfusions.

Trust your instincts

I spent a total of 11 days in intensive care due to a stagnant bilirubin level and the unexpected bleed. Due to my critical illness, my breast milk never came in. I tried to encourage it with pumping, but unfortunately I was not able to.

Every single aspect of ‘normality’ of having a baby as taken away from me, despite the constant reassurance that how I felt and my symptoms were ‘normal’.

I spent the next nine weeks having regular bloods to ensure my bilirubin and liver function returned to normal, which I’m pleased to say it did. I lost 9kg of fluid from my legs, and a further 14kg of weight from what my weight was prior to pregnancy. I believe I was continuously losing weight while pregnant to have lost such a dramatic amount since.

I am recovered and my baby is healthy. But things could’ve have been so much worse had I not trusted my gut on that Sunday as we were told both myself and my son wouldn’t have made it.

There needs to be more awareness of AFLP and education within maternity services. As a nurse working in a large teaching hospital trust, I am now going to ensure this happens and practice changes. I do not want what happened to me, to happen to another woman. I want women to know if something doesn’t feel right, please trust your instincts and I want maternity services to be aware of AFLP and investigate when a women presents with the symptoms!

The post Chloe’s story: “There needs to be more awareness of AFLP and education within maternity services. I do not want what happened to me, to happen to another woman.” appeared first on British Liver Trust.

Liver disease can be there for a long time before it raises its ugly head and Kev and I want to share our story because he wasn’t aware of anything until it was too late.

Kev was diagnosed with type 2 diabetes in 2020, but he was never monitored and liver disease was not mentioned. In July 2023 while on holiday he had three episodes of shivering, rigors and although he said he didn’t feel unwell, I wasn’t happy so we came home early and went to the GP. By now Kev had started to go yellow, his liver was also quite distended and his blood tests were deranged. The GP thought it might be liver cancer and referred us straight to the medical assessment unit (MAU). He was transferred to intensive care where I work for more tests just hours later.

The following day Kev was sitting up and didn’t look ill apart from the fluid building up on his belly and legs and his yellow eyes and skin, but the consultant said he had sepsis and he didn’t know if he would get through it. They treated the sepsis with antibiotics and he was also diagnosed with MASH and cirrhosis, which they put down to his diabetes and previously being overweight. Four days later Kev was moved to the hepatology ward, but he went off his legs because they were very heavy and he became quite weak. He had a couple of ascitic drains and three weeks later he went home, but after three days his belly had grown again and he was struggling to breathe. The GP saw him at home and sent him straight back to MAU.

Kev spent another four days in ICU and was ventilated for 24 hours while they did more CT and MRI, he got sepsis again, was drained a couple of times, then went back to the hepatology ward and was discharged three weeks later. After that he would go in every two to three weeks to have his ascites drained, but didn’t want to eat so had to be NG-fed for a while which he hated.

Intense itching

He was referred to Birmingham for a transplant assessment six months later after a potential issue with his kidneys was resolved. Prior to that Kev was admitted and the doctors said: “We’re not saying no (to the transplant) because we feel we might be able to build him up enough, but we can’t say yes at the moment because he may not get through the surgery.” That’s what we expected and at least we didn’t get a no.

Prior to this assessment in March 2024 Kev started to get a bit muddled and his itching was really intense, so I took him to A&E. He was admitted with HE and was unconscious for a week. The hepatologist said he didn’t know why Kev wasn’t coming out of it and wasn’t sure he was going to. This was the third time I’d been told that he may not survive, but the first time I felt really scared.

On my birthday he did start to wake up a little bit, then he started to come round and came home after two-and-a-bit months. Since then, the only time he’s in hospital is to have his drains done and to look at him you wouldn’t think he’s ill

I now became a bit of a whipping lady trying to build him up with the protein shakes and Kev’s weight started to come back on and he was happy because he didn’t need the NG tube.

Even though everyone was fighting for a yes at the hospital Kev couldn’t have a liver transplant because his heart scan had shown too much calcification

A friend recommended him going out for a meal and eating whatever he could and that it didn’t matter how much he was able to manage. Thank God for that advice as it worked probably because it wasn’t me telling him. I tried more substantial things and if he only ate a quarter of it, that was fine. Otherwise, he would have just kept on having soup.

We kept going back to Birmingham for different tests until in November 2024 the doctors said he would be discussed at the MDT meeting to see if he was ready. A week later we got a phone call a week later saying unfortunately even though everyone was fighting for a yes at the hospital he couldn’t have a transplant because his heart scan had shown too much calcification.

We were obviously very upset but over the months we’ve talked about it a lot and maybe, in a strange way, this is the better option. Apart from his liver Kev’s fit and well so we can enjoy life. If he’d had a transplant he would have needed an extensive recovery and rehabilitation and he’d be on lots of tablets and might not even have made it through the surgery because of complications.

Most recently in October and November he’s just been on a trial to see if permanent drains would be suitable which I can look after and it will be done at home every three days, rather than going into the hospital.

Seeing some positives

We’re both passionate about raising awareness of MASLD because many people are only diagnosed when they have a blood test for an unrelated condition. We need to have more Well Man and Well Woman clinics that do blood tests that include your LFTs because if liver disease is caught early, you’ve got a bigger opportunity to get yourself treated. We need to see more about liver disease on TV too – why aren’t the powers that be advertising it on TV?

Emotionally, it’s been hell on earth and Kev is more emotional than he ever has been. Every time something isn’t right he worries that it’s his liver. When he was first diagnosed, I thought if something happens to him I don’t think I’d want to be here, but I’ve since had counselling and have been on happy pills for a long time. If I wasn’t, it would be a completely different story.

I’ve volunteered with the British Liver Trust, will write to my MP and am spreading the word as far as I can locally too. There is a Liver Lantern support group which is run locally and they have been great. I’ve also met a few lovely people along the way who have been so supportive and I can’t thank them enough. I’ve started painting rocks to promote the Trust and put them in my local area and in the ICU garden. It’s so easy to do and I find it very therapeutic. I also did the 30 for 30 Challenge and managed to raise over £1,000 – I was only aiming for about £250 so I was gobsmacked. My little certificate now sits very proudly on the shelf.

Kev and I have been married for more than 30 years and we try to see some positives in our situation. He’s fit enough to enjoy life and we’re doing things that make us laugh and smile. Two-and-a-half years after diagnosis he’s still here and we’re making sure we’re enjoying life more than we ever have done, going away on little holidays and making memories.

I have also had a tattoo done with the word love and next to it are two butterflies denoting the two years that Kev has survived this awful disease. I can’t wait to have another butterfly added for year three. Even the artist said ‘I’ll see you next year’.

The post Kev and Suzie’s story: “We’re both passionate about raising awareness of MASLD because if liver disease is caught early, you’ve got a bigger opportunity to get yourself treated” appeared first on British Liver Trust.

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.