Doctors discovered an abnormality on a scan before I was born but didn’t know what it was. Bloods were taken after my birth and within two or three days a problem with my liver had been identified. My doctors knew it was serious but didn’t know what it was, so I was sent to King’s College Hospital. Just 24 hours later King’s confirmed it was biliary atresia and I had the Kasai procedure at just 12 days old.  At that point I was the second youngest person in the world to have had it.

The only comfort my parents could find in my situation was that my dad grew up very near King’s and his brother lived nearby so there was a lot of family support in the area.

I’ve had endoscopies and clinic appointments ever since but had no symptoms and thankfully they only had to do a surgical band on me once. My whole family is really into their sport and keeping fit and eating very well has really helped me over the years. From the age of 13 I was running national and regional cross-country championships, at 14/15 I played for Salisbury City and I played a bit of tennis too. I also ran for my university.

Academically I’ve done OK. I studied philosophy at university and graduated last year and I’m now working full time as a trainee teacher in Spanish and English. I’ve also been very involved with the Children’s Liver Disease Foundation over the years and done podcasts and blogs for them, as well as running the London Marathon.

I always knew I would need a liver transplant, but was still shocked when my doctors told me

When I was 21 doctors said it was looking increasingly likely that I would need a transplant within the next two years. I had always known it would happen, but when the reality actually hit, it came as a shock. I’m now on the transplant waiting list.

I contacted the London Transplant Football Team to say I would love to play some games with them. I had never met anyone with biliary atresia before outside of a medical environment and never really dreamed it would happen, so it was a bit of a wow moment to be playing with people with my condition. Everyone in the team has had a transplant, and not just livers, so we’re able to sympathise with each other and help each other. It’s good to be involved with them.

If you’ve been diagnosed with a liver condition, be kind to yourself and always remember you’re doing really, really well. Push yourself to stay fit and healthy if you can, but considering everything that people like myself have had to endure medically it’s important to look after your mental health too. Whatever you do make sure it makes you happy.

The post Louis’ story: “I was the second youngest person in the world to have the Kasai procedure” appeared first on British Liver Trust.

My daughter Otillie was born on March 28^th, 2023. After having her I felt very uncomfortable and wasn’t sleeping well, but as she was my first baby I was unsure if it was my body adjusting. During the midwife’s home visit a day or two after Otillie was born, she pointed out that my ankles were quite swollen, but said it was nothing to worry about and it’s fairly common in new mums.

The swelling didn’t go down for about a week and, if anything, I was getting bigger and more bloated than I had been when fully pregnant.

Checks, blood tests and scans

I’m normally quite slim and fairly athletic, so felt there was something wrong. My first thoughts were that I hadn’t delivered my placenta correctly, however when revisiting the hospital, they checked this and took some blood. They said my liver enzymes were slightly elevated, however in postpartum women this is normal. After another week the swelling still hadn’t reduced and I spoke with my mum and midwife that day and we were told to go straight into urgent care. It was horrendous. They were unclear what was going on, so I had lots of checks, bloods and scans, after about eight agonising hours they realised I had no flow into my liver, or out of my hepatic vein.

I was admitted into hospital that night, 14th April 2022, and never thought I’d spend the next two months as an impatient.

I remained in hospital for a week under constant monitoring until I could be transferred up to Queen Elizabeth Hospital in Birmingham. I was petrified. The QE did a venogram and biopsy and said they would place a stent in a few days later and I would be able to go home to my daughter and recover. Unfortunately this first attempt was unsuccessful. I was placed on IV antibiotics for the next couple of weeks until we tried again.

My sodium levels had dropped and I was transferred to ICU for 10 days

When my anaesthetist came to see me pre op, they informed me that my sodium levels were low and needed to come up to ensure it was safe to operate. It should take around 24 hours, then we could try again. Twenty-four hours later I wasn’t getting any better, my whole body was restless, my legs kept cramping, I was unable to eat and drink and when my husband came to see me, I was talking nonsense and very confused. My sodium levels had dropped to 113 and I was transferred into ICU for ten days. It was awful. By then I wasn’t fully aware of what was going on, but it was one scary thing after another. I slept a lot. My stomach kept swelling up and I was drained every couple of days, around 12L at a time. I was also being pumped full of sodium and my blood pressure dropped very low. I was put on a water restrict and only allowed 50ml every hour.

Mum sat by my bedside, which gave me great comfort.  

After 10 days they got my sodium levels up to a stable level and decided to have a go at the procedure again. This time it was successful, but the stent clotted over so I was back in ICU. I remember thinking ‘I don’t know how much more I can take of this’. I was very weak, and very sick.

The weeks without Otillie were horrendous, I don’t know how I got through it. I’d just given birth, but she couldn’t stay with me in hospital – it felt like she’d been taken away from me. Then I became so poorly that my brain shut that out to protect me. My husband would bring Ottie in, but I was so weak that I couldn’t hold her or feed her and she would just lay with me on the bed. I felt like I didn’t know who my own daughter was.

Life or death

The doctors managed to get my sodium levels back up (but still under normal limits) and said they would have to do the stent procedure again, it was a life or death thing. That was the scariest part. I remember going down to theatre and really thinking I would die, but I wasn’t afraid because I was so unwell that I became accepting of what was going on. Thankfully, that  procedure was successful, however I had bled during the procedure so they placed me on a ventilator and returned me to ICU. I woke up the next morning, very confused but my dad had driven up to be with me. I’m so very grateful to all the ICU nurses who let him sit with me after visiting had ended. I spent another week or so recovering before they transferred me back to ward 306.

I was in for another four weeks during which they did ultrasounds on my liver, ECGs, heart scans, endoscopies, and daily bloods. I had to learn to walk again, go up steps and use the bathroom. Mum and I would walk up and down the ward, I couldn’t believe aged 27 I was a shell of who I’d been. It was heart-breaking.

From now on I will have a yearly venogram and six monthly ultrasounds of liver

It was a slow process of building the muscle up again to get me ready to leave. I was discharged on 16th June, but still had to have bloods every two days, then every six weeks I would go up to Birmingham where they would weigh me, check that everything was going in the right direction and see which medications I could slowly come off. From now on I will have a yearly venogram and six-monthly ultrasounds of my liver. I’m also on warfarin for life.

My consultants had asked me about my lifestyle and family, but I had no predisposition to any clotting disorder and there was no family history of my condition. I’ve been advised not to have any more children, which I found immensely hard to deal with – I did a lot of crying. However, I’m very blessed to be here and have Otillie who’s my world. She saved me, I had to get home to be her mummy.

Forever blessed

Thank goodness for my incredible family. My mum, dad and husband who sat by my side, cried with me, cared for me when I was at my weakest and got me home. My mum was just incredible, she is such a fierce, strong mumma, I remember one day she wheeled me out of ICU to get us both a Mr Whippy – it was perfection. We moved in with them when I was first discharged and mum and dad helped bring Otillie up with myself and Dom. I was unable to get up and down the stairs, in and out the bath or even lift her when I first returned home.

After around two months living with mum and dad, we moved home to start our little family. I was scared, but I am slowly getting back into fitness now and very lucky that I have the best family and friends locally to help me when I need it.

One of my consultants, Matthew Armstrong, said the British Liver Trust is amazing and told me to check them out – the website is fantastic. I’m really grateful to the Trust and Birmingham, not only did the team there look after me, but also my Mum, Dad, Dom and, of course, our darling Otillie– we couldn’t have asked for anything better.

Back in September I walked 100 miles for the Trust– I could do it slowly and take Otillie and Jasp, our cocker spaniel with me. I raised £1,355, which was amazing and I’m very grateful for anyone who donated.

I am extremely grateful and will be forever blessed to be here today. I never take anything for granted anymore. Always tell the ones you love how much you love them, because no one really knows what’s around the corner.

The post Issy’s story: “The British Liver Trust’s website is fantastic, and I’m really grateful to them” appeared first on British Liver Trust.

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

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

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

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

After two CT scans the hospital decided I had liver cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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