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.

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.

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.

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.

In 2017 following a routine blood test I was diagnosed with possible fatty liver disease and further tests showed I had very low platelets and an enlarged spleen. However, after a biopsy in 2020, the diagnosis was revised to autoimmune hepatitis and I was prescribed prednisolone.

For the next few years my blood tests, endoscopies and scans were stable and I felt good, exercised a lot and was only going to clinic every six to eight months. I would occasionally get an infection and go into hospital, but I’d always come out feeling very well. I was assessed for a transplant during one of these infections in 2020, but my doctors decided it wasn’t needed yet.

By March 2024 I tired more easily and walking distances and going upstairs became a problem. Fluid started appearing around my lungs which meant having a chest X-ray and my medication being changed until it cleared. I also started getting occasional bouts of encephalopathy. My first experience on encephalopathy was following an endoscopy. I came home, went to bed and when I woke up I didn’t know who anybody was. It’s such a weird and frightening thing and we didn’t know what was happening at first.

Encephalopathy worsens

I gradually started to recognise when the episodes were coming – they only lasted five or ten minutes and then I was back and would remember every single detail, but I wondered why I couldn’t do anything about it or stop it. By autumn 2024 I was still working and doing all the things I normally did, but was a lot more tired and the encephalopathy was getting worse. I would contact family members and say: “I can’t get hold of mum or dad, you need to take me there” when my parents had died 20 years ago. And every time after the encephalopathy had passed, I would go through the whole mourning process again.

I also started wandering without a clue where I was going. One night it was tipping down with rain and I put my coat on, left the house and walked in my slippers for about five minutes. Eventually I got back to our close, soaking wet, but didn’t know which house I lived in, so I stood around for a bit until I finally remembered. From then on my family locked the doors and hid the keys. They also fitted a camera in the kitchen, got me a watch with GPS tracking and a pin from a dementia charity that is programmed with my husbands phone number in case I ever got lost. It felt intrusive, but it kept me safe. If anyone starts experiencing encephalopathy, I would advise them to tell their team, otherwise it will just get worse and be more frightening.  I took a supplement Lola suggested by my team.  I think it did help a bit.

Because of the encephalopathy I didn’t remember what my doctors were saying so my husband had to be responsible for everything. When my consultant saw my hands were shaking he said I couldn’t drive anymore and two weeks later I was admitted for a liver transplant assessment. I was listed in November 2024 and was so relieved because my illness was affecting everybody’s lives, not just mine.

The donor liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me.

I worked right up till the transplant and my boss Mark, was brilliant, but as things progressed, I started working from home for my own safety. When I went to clinic in March 24, I didn’t know who anyone was, so my doctors put on the priority transplant list. I had my first call a couple of weeks later, but the liver wasn’t suitable. A second call came a couple more weeks after that at 4.20am on April 27^th.

I was asked to be at the hospital for 6.30am and was taken into theatre at 3pm – the liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me. The transplant took seven-and-a-half hours and when I woke up the next day in ICU I remember my husband giving me ice cubes as I had a terrible thirst.  The day after I had to get out of bed – which I absolutely didn’t want to do, and had to sit on the end of the bed, stamp my feet, stand up, sit down… The following day I refused and they left me alone.

The second day I woke up without the wooziness from the anaesthetics I knew my head was better because I knew what was going on and who everyone was. Now I just had to get better physically, but I was surprised at how weak my muscles felt and it was almost like I had to retrain my body to do everything. Walking any distance or going upstairs was hard but I was determined. After I was moved to the high dependency unit I would get up every day and walk with the physios, my son or husband – whoever was there – and was discharged after nine days. I went back to Addenbrooks the following week for a check-up and that went well, then again the following week for another check-up and they left me for two weeks. It’s got a bit longer each time and as of October 2025 I haven’t been to clinic for two months now.

Life-changing operation 

The operation has completely changed my life and I’ve got my strength, energy and brain back. Before the transplant my speech had slowed because I was trying to think what the words were and trying to form them, but since the operation I’ve been talking ten to the dozen.

When I was first diagnosed  in 2017, I was terrified and didn’t know what it was. Then I found the British Liver Trust – the patient information is really informative and I now follow them online because I’m really interested in medical breakthroughs and new medications.

Because of my donor and their family I’ll be here for my son my grandson and my family. It’s really important people understand what a difference organ donation makes – it’s not just to people’s lives, but to their family too. My 86-year-old uncle kept looking at me and saying: “I don’t believe it”.

The post Jackie’s story: “My family locked the doors, hid the keys and fitted a camera to keep me safe” appeared first on British Liver Trust.

In 2008 I was a 45-year-old mum of three, my dad has just passed away, I was doing my nurse training, working hard and feeling really tired. My doctor said it was stress and suggested a blood test.

Because I had no symptoms I left it for a while until one morning at work I felt my blood sugars were low. I had the blood test and the doctor came to find me that night because there was something wrong with my liver and I was admitted immediately.

The doctors didn’t know what it was at first and asked me if I drank or took drugs – I didn’t. They then sent me for a scan which showed my liver had shrunk to the size of my fist, so I was blue-lighted straight to Birmingham for a transplant.

That was the Wednesday night, I was given 72 hours to live and listed super urgently. By Saturday they had a potential liver but said it was too big and they could wait another day, then on Saturday night they got another one and I was transplanted on the Sunday morning.

Hepatic encephalopathy

It all happened so fast, but I couldn’t think straight because I had HE and was very argumentative with the nurses, although I would apologise afterwards because I’m not that sort of person! After the transplant I was in for two weeks and remember having a Chinese nurse who was an angel, but the food was awful. Pre-transplant you’re given everything possible to make sure you’re as healthy as you can be, but the first meal I had post-transplant was fish and chips with cold, rock-hard peas. People were bringing me in food from home.

After I was discharged I had to keep going back every three days and take an overnight bag with me in case I needed to be readmitted. Derby to Birmingham isn’t the best trip to be making when you’ve got a massive scar that’s still healing, but it was during one of these appointments that they discovered I was experiencing rejection. I spent six days in intensive care while they stabilised me and my doctors told me to prepare myself for the worst. Everyone was round my bed and my friends helped me to make a will to ensure my girls benefited from everything I had, but I recovered!

When I first had the liver transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport

Later, I also had a lot of ascites and two hernias, I looked like I was six months pregnant so I was admitted to have a stent put in. My weight had dropped to seven stone at this time, I’m normally ten and the doctor sent me home because I was malnourished and the hospital food was so awful.

When I first had the transplant I thought I looked awful and would never be normal again, but then I saw a poster about transplant sport in the hospital canteen. The people in it had been through the same thing as me, but they looked normal! So as soon as I was fit enough, I got in contact with them and never looked back. I had my first World Games in 2010, representing Great Britain and I’ve taken part in them ever since.

I tried swimming at first but didn’t really like it, then decided on cycling because you could do without joining a club. I went from owning a crappy bike to getting a better one and training more and more.

The first medal I got was a bronze in Sweden, which I didn’t expect to get and the first Gold was in South Africa where I was competing with one of my closest friends. On the first race I stopped at what I thought was the finish line, got off my bike and started walking, but then people were shouting: “You’ve not crossed the line!” so my friend got the medal for that. The following day I decided there was no way she would beat me again and, this time I knew where I had to stop and got my first Gold medal. I’ve won six more since then!

Donor’s family

I’ve written to my donor’s family three time and told them what I’ve been doing, but I’ve never heard back. I’m so grateful to them because they respected my donor’s wishes and I’ve had 17 more years with my family than I otherwise would have done.

I’m sharing my story because people need to talk about organ donation and share their wishes more with their friends and family. There are so many people who want to donate but their families stop it, so it doesn’t happen. When you’re at the World Games you see all the people whose lives have been saved by somebody else and the donor families take part too and they find it so uplifting.

If you’re waiting for a transplant you’ve got to stay positive and don’t feel your life is over because it’s not. Apart from a scar and someone’s liver inside me I live a normal life and so will you.

The post Diana’s story: “Thanks to my donor, I’ve had 17 more years with my family than I otherwise would have done” appeared first on British Liver Trust.

My childhood wasn’t easy. My mum left me and my sister when I was two and we were in and out of children’s homes and foster care for five years while my dad fought for custody. We then lived with him and the lady who became my mum and her three children.

As a child there wasn’t much food that I enjoyed and as I was moving from primary to secondary school I started getting tummy pains and developed a big belly. I was only 12 but there were lots of rumours going around that I was pregnant. Doctors prescribed medication for my appetite, but it didn’t help. They couldn’t explain the pain and told my mum and dad I had malnutrition because I was skin and bone and had the big belly. Then I had a blood test and that same evening there was a knock on the door – the GP surgery nurse said my blood had clotted so they needed to redo the test. I later found out it was because they couldn’t believe that they were seeing what looked like an alcoholic’s blood in a 12-year-old.

I was referred to a specialist at Grimsby hospital, who immediately said it was something to do with the liver and I was admitted and diagnosed with autoimmune hepatitis. I wasn’t too bad until my mum had to leave and then I started crying because I didn’t want to stay there with strange people. Also, there was test after test and I hated needles.

I began deteriorating and spent more and more time in hospital. Eventually the doctors referred me to a liver specialist in Sheffield Children’s Hospital, where I had my first liver biopsy. Luckily, I was sedated for this.

Transplant is only hope 

I don’t remember much about the hospital, apart from a girl with leukaemia teaching me how to make perfume out of flower petals. One morning when I woke up her bed was empty. I was told she had gone home but later found out that she had passed during the night.

Not long after this I was transferred to Sheffield’s Royal Hallamshire hospital, which I hated as in my eyes it was full of old men and women. By this time my stomach was extremely large and the doctors found it hard to believe that my skinny body could bear its weight. When I reached the age of 15 they said my only hope was a new liver.

My final transfer was to the Queen Elizabeth in Birmingham where I had more tests and they had to build me up so I was strong enough to get through the operation. Everyone helped, nurses and patients’ families would all bring me in little treats to try to get me to eat. I was supposed to be on a no-salt diet, but eventually they let me eat what I wanted to at least get some food down me.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the operation, but luckily they took the risk.

My transplant co-ordinator was great and made me laugh. He got me a teacher to help with my schoolwork when I was well enough and made sure I had things to keep my mind occupied. I was discharged, but haemorrhaged on my first night at home and ended up back in Grimsby hospital where they gave me blood for a couple of days and then transferred me back to Birmingham.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the liver transplant operation, but luckily they took the risk.

I was now losing the strength to carry on, but luckily my parents were there to support me. They rented a flat near the hospital and there was always someone with me from when I woke in the morning to when I went to sleep at night. Eventually my sisters came too and went to local schools – one sister has learning difficulties and didn’t really understand what was going on. Our neighbours back home were also great, they sent me letters and my favourite spaghetti Bolognese when anyone was visiting. I am so proud of all my family – it must have been difficult with me getting all the attention.

Mealtimes were still a challenge and my dad would get angry when I didn’t eat, but if he hadn’t pushed me, I would never have pulled through. I went into a coma while waiting on the transplant list which scared everyone, although I came out of it a day later, I wasn’t making any sense for several hours.

Eventually a donor was found, but the liver wasn’t suitable. Some more time went by, I’m not sure how much. I was on drips constantly, either feeding me or giving me blood and was getting weaker. Then another donor became available and this time it was suitable. I asked if I could have some soup first (I’m not sure why) but I wasn’t allowed to eat. I hadn’t eaten much that day and just because I wasn’t allowed, I really wanted to.

I was given my pre-meds and could see the worry in my parent’s faces and had to stay brave for them. When the time came for them to wheel me to the operating theatre, my mum and dad came as far as they could, holding my hand. I still managed to keep up my brave face but deep down I was scared stiff not knowing if I was strong enough to pull through and if I would ever see my mum and dad again.

I was only the 22nd person to have a transplant at Birmingham – the operation lasted about nine hours and I woke up in intensive care. As I was on life support, they gave me a pen and paper to communicate with. I didn’t like it when they turned the life support breathing down as it meant I had to breathe on my own and it was really difficult.

Eventually I could breathe on my own and it felt good being able to talk again. I started to eat slowly but the food tasted funny with salt in it.

Liver rejected

I also had to learn how to walk again and go to the toilet. The toilet was the worst thing, I cried each time I tried unsuccessfully as I knew they would need to put the catheter back in. It seemed to take so long to get back on my feet, but eventually they let me go to my mum and dad’s flat for a couple of hours. One day I think I may have done too much – we family were visiting and that night on the ward I had a fit and woke up on drips. After that I had up and down days and when there were more better days the doctors let me move to my mum and dad’s flat, but I had to visit the hospital every day. Once my visits became once a week, we moved back home.

Family and friends put on a welcome home party, to which I was driven in a white Rolls Royce and things started to go really well, I went back to school and at the age of 16 I started a youth training scheme to be a stewardess and travelled round Europe.

Unfortunately, three years later my liver rejected and I was back on the transplant list, but they amended my medication which seemed to work, I was stable again and back off the list. My bloods have always been at a stable stage which has worked well for me, but I don’t think they will ever be perfect.

I am now 55, fit and well, and have had 40 years of living a normal life and two children, although the pregnancies were not easy.

I would like to thank all the doctors, nurses, friends and family who helped give me a life, but most of all the parents who made that difficult decision to donate their young child’s liver. I will never forget the donor, they are always on my mind and the fact that they lost their lives and I will always keep part of them alive with me.

The post Julie’s story: “I was 12 years old with a big belly and there were rumours going round that I was pregnant” 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 was a happy and healthy young boy until I caught chicken pox, aged five. It caused awful stomach pains and the out-of-hours GP told my parents to take me to A&E immediately. My liver and spleen were enlarged and I was transferred from one hospital to another while they tried to work out what was wrong until eventually my parents were told I had liver cancer. I was due to start chemo, but a final liver biopsy showed that it thankfully wasn’t cancer, but congenital hepatic fibrosis.

Things were then pretty much problem free until my thirties. The scarring of the liver caused high portal pressure and my enlarged spleen was swallowing up my platelets, and the risk of oesophageal varices was more of a concern than the liver condition itself.

In the summer of 2022, I started experiencing occasional slight swelling in my feet. I thought nothing of it until it was around my knees and mentioned it at my liver clinic. I was told it was the start of oedema and was prescribed a low dose of spironolactone. I didn’t realise this was the beginning of end-stage liver disease.

In March 2023 I developed gastroenteritis and contracted campylobacter and spent a week in hospital with severe stomach pains. I was administered morphine, but was unaware of how much it bungs you up and wasn’t given any laxatives or other medication when I was discharged.

Prescribed Rifaximin

Two weeks later, I tried to get up in the morning but completely fell over. My pupils were huge and I didn’t know who my fiancée was, or where or who I was. When the paramedics arrived, I was lying down with my eyes rolling in the back of my head, mumbling nonsense and totally unresponsive. I had also become quite aggressive which was completely out of character. I was blue-lighted to A&E, then quickly moved into intensive care where they concluded I’d had a massive episode of hepatic encephalopathy. Due to my body not being able to process the toxins properly the ammonia levels in my brain had reached almost 200. Much more and I would have surely been in a coma or have died. Thankfully, I made a full recovery and was discharged after 11 days. I was prescribed Rifaximin and placed on the transplant list in October 2023 which was amazing. However, that was quashed when my fiancée decided she didn’t want to be with me anymore.

Through Christmas and into the new year my oedema and now ascites became much worse. My condition and losing the love of my life was affecting everything and by mid-March 2024 I had left my job and was being drained every few weeks as the diuretics weren’t really working anymore. I was going downhill and would go into hospital for a week or more at a time, get discharged and a couple of days later I’d be back again. By August I was in full time and was being drained of at least eight litres every week. I also now had a feeding tube which I hated at first. I’d have vivid dreams in the night and would pull it out, it was horrible.

By the end of August 2024 I was taken off the transplant list as I had become too poorly. Due to the shortage of livers they don’t have enough to fix everyone and people become too ill to survive the operation. The palliative care team talked about preparing for end of life, but I don’t remember feeling too upset about it. Prior to this I had been begging to be transferred to the transplant unit in Leeds, but I had now almost given up hope and didn’t want to be poorly anymore.

Ten months after my liver transplant I feel better than I have done in years; my fitness is almost back to my 20s, my meds have stabilised, my bloods are perfect and my post-hospital recovery has been ‘text book’

Amazingly on 16^th September I was told: “You’re going to Leeds!” I couldn’t believe it and was so happy. I was rapidly becoming more unwell and was extremely weak, shaky and could only slowly walk a few laps of the ward. The muscle degeneration was also evident. I was assessed by the transplant team, but I don’t really remember much from this point onwards.

On September 29th my bloods had become deranged and I was moved to ICU and put on kidney dialysis with a view to transplant re-listing. Two days later I was placed on the ACLF (Acute on Chronic Liver Failure) list and had multiple blood products overnight due to coagulopathy. The following day I experienced confusion and was put into a coma. I had an endoscopy and CT scan after developing melaena and became top of the transplant list. A potential liver was found but unfortunately it was too fatty, so couldn’t be used.

I was being kept alive by machines, was in a coma and literally had days to live before the miracle happened! Another liver was flown in and at 6.30am on Monday 7^th October I was taken to theatre and came out around 3pm after my transplant and umbilical hernia repair, with the liver actually starting to work while I was still on the operating table.

The following day I was extubated and woken up after seven days in a coma – I don’t remember much other than the staff being very kind. Two days later I started experiencing delirium and was put back on dialysis to give my body a chance to recover. The next few days I struggled with breathing and coughing up the grey sputum from being on the ventilator during the coma and was unable to talk. This went on for at least two weeks and one of the physios brought me picture cards and a whiteboard to help me, but I still couldn’t communicate, which was so frustrating.

Posterior Reversible Encephalopathy Syndrome

I was still struggling with other problems when I suddenly had a massive seizure and a drop in consciousness and was put back into a coma while they tried to work out what was wrong. I had developed PRES (Posterior Reversible Encephalopathy Syndrome) due to a reaction to the medication and after an MRI of the head and a couple of days of medication changes, I was woken up for the second time and came off all ICU support.

A few days later I was moved to the post-transplant ward where I spent the next month. My recovery was very up and  down, I had lost so much weight and muscle mass (20kg! I only weighed 72kg to begin with) so I was extremely frail. I went from not even being able to lift my head off the pillow, to just about sitting up, then starting to stand, to walking with a Zimmer frame, then finally walking with a crutch. It was a real struggle and I had to learn to do everything again – speak, walk, eat and write. But I was determined – I had Nanna Cheryl’s Boxing Day Party to get to and that became my target. Remarkably I ended up leaving hospital on 14^th December and made it to the party!

Through it all I had some of the absolute best doctors and nurses I could have ever wished for. Their patience, kindness, dedication, skill and care was incredible and I am eternally grateful to them!  Ten months on and I feel better than I have done in years; my fitness is almost back to my 20s, my meds have stabilised, my bloods are perfect and my post-hospital recovery has been ‘text book’. I’ve joined the gym and try to walk a few times a week and keep fairly active. The only thing I struggle with a little is getting tired at times, but if that’s all it is, then I’m good with that!

For anyone on the list or waiting to maybe go on the list KEEP GOING, it really can and does change your life! Good luck to everyone out there and thank you for reading my story!

The post James’ story: “If you are on the list or waiting to be listed KEEP GOING, a liver transplant changes your life!” appeared first on British Liver Trust.