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.

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When Ben’s father was admitted to hospital with alcohol related liver disease, the family fought to ensure he received the best care possible in a ‘critically ‘underfunded’ NHS. However, when the doctors said there was nothing more they could do, the family did everything they could to ensure their beloved dad’s final days were as comfortable as possible. Thank you for sharing your story, Ben  

My dad first started drinking at weekends when he was younger. He later became a functioning alcoholic for the last 30 years of his life following the death of his dad and best friend in quick succession, meaning drinking went from social to numbing. He and my mum separated when I was 12, but they lived only two minutes away from each other and he was always a great father.

It was only when my brother and I got older that we realised the quantities Dad was drinking and would sporadically raise the issue with him. He recognised it, but didn’t do anything about it and tried to hide it. Dad’s physical health began deteriorating rapidly in 2021 when he was 63 – his balance became a lot worse, there was muscle wastage and the smell of his breath became foul. Because he was a stubborn Northern bloke he’d never admit to being ill, so when he eventually said he felt awful we immediately took him to A&E. Dad was in and out of hospital for the next six months.

While the individual staff were brilliant, the NHS is clearly critically underfunded. Everyone knows it, but until it happens to you or someone close to you, you don’t realise just how bad it is. Dad stopped drinking and did everything the medical staff asked of him, but during his first admission he said to staff that he only drank two bottles of wine a week because he was embarrassed and wanted to go home. It was hard to get hold of medical professionals who knew about my dad to correct that information and even when I did, I wasn’t sure how much it was taken on board.

No liver ward

Dad’s first discharge letter was just two sentences long and he was given two types of tablets. We were appalled that no one checked if he had family or carers and if we hadn’t demanded that someone take him on again, he would have died within weeks. He should have been referred to the appropriate (liver) team immediately, like you would be if you had a heart problem. When that eventually happened they were great, but they needed more help. There was no liver ward, only a tiny office down the corridor for staff which was not always occupied. Both mum and I worked at the hospital so we could knock on people’s doors, but I don’t know how someone would cope if they didn’t know where to go or who to ask, or if they didn’t know how to use the internet. They’d be completely lost.

Now Dad wasn’t drinking, my mum noticed he was getting his old personality back and becoming more jovial even though he was very poorly. However, he was becoming very forgetful and the liver specialist diagnosed him with hepatic encephalopathy almost immediately. Dad was very ill at this point, but we were staying positive and continuing to do whatever we were asked as it was all we could do. However, by January 2022 Dad’s doctor said he was too ill for a transplant and the chances of him surviving were basically zero. Nothing can prepare you for a conversation like that. Everything became a blur and it was now all about doing what we could to extend his life for as long as possible, and enjoying whatever time we had left.

I stopped working, and my mum, brother and I took it in turns to care for him. Because I’d worked in healthcare since I’d left school and my mum had 30 years’ experience as an NHS occupational therapist, we were used to looking after people. However, Dad hated having his closest family do literally everything for him, especially when the itching and HE got really bad and he constantly needed the toilet. We were happy to help him, but the pain on his face from having to ask was hard.

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the hepatic encephalopathy set in, he was bored of almost everything because he felt so crap.

Food became a real challenge. Dad hadn’t like the hospital’s hot food, so they would just Leave sandwiches for him, but he never ate sandwiches before and was not about to start now. By the time we got him home and did our research on what we should be feeding him and aligned that with what he actually wanted to eat, he was weak and bedbound. I found that conversations about what he used to like eating proved really useful. When we chatted about that he said how much he used to like fish, chips and mushy peas. That night we had some and
he probably ate three times more in that meal than he had in the previous two days!

We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the HE set in, he was bored of almost everything because he felt so crap. He could just about walk from his hospital bed in the lounge to the front door with someone keeping an eye on him, but it would knacker him out for a day afterwards. When we’d ask him what he wanted to do he’d say ‘nothing’, so we’d try different things and he always enjoyed them. Family would come and visit and we took him to Swanage one day in
his wheelchair. Although this was extremely tiring for Dad he really enjoyed it.

Constant itching 

The district nursing team were brilliant before Dad died, helping to sort out equipment and provided useful tips. It would have been amazing to have their help months before but, sadly, that’s not how it works. Towards the end Dad was delirious, constantly itching and in pain, and was unresponsive in his last couple of days. When Dad died on March 9th 2022, my brother and I walked in from a different room and quickly realised it was happening, we phoned my mum and she came over straight away. We were all together.

Immediately afterwards the family did a whole load of nothing, apart from just being in each other’s presence. After a few months I had counselling. I had been quite sceptical of it, but it was what I needed. Just being able to talk to and cry to somebody other than my family – I would really recommend it. Eventually my emotions stopped occupying every minute, I found the energy to do things again and I returned to the gym and started a master’s degree in nutrition.

Mum only found The British Liver Trust by Googling a while after Dad had been diagnosed, it hadn’t been signposted by the hospital. It was only after he died that we started thinking about sharing our experience to help families in a similar situation. I also volunteered with the Trust’s publications team and a dietician on how to encourage people with cirrhosis to eat and contributed to the Questions To Ask Your Doctor web page. I remember being so blown away by the magnitude of what was happening with Dad that we didn’t take in what the doctors were saying. It’s so easy to be tongue-tied during your appointments and only remember afterwards what you wanted to ask, so hopefully the template can help.

Knowing about the information and support provided by British Liver Trust earlier would have been invaluable and I would recommend that people go straight to their website rather than relying on a busy hospital to provide that. We were in the dark for the first few months and the hospital can only tell you so much before they get the results back.

Ben’s close shave raises more than £2,000 for the British Liver Trust

The post Ben’s story: “Knowing about the information and support provided by British Liver Trust earlier would have been invaluable” appeared first on British Liver Trust.

To help us prepare, the Trust’s policy team sent us an email outlining the structure of the event and what our roles would be. As well as telling the MPs about my dad, there were also key messages that the Trust wanted us to share with them. This included asking them to write to their local health board about commissioning an early detection liver disease pathway and to call on the Department of Health to provide early diagnosis technology for liver disease and liver cancer in the community.

We then had an online call with the policy team and other volunteers who would be at the event too. It was nice and informal and everyone was really friendly. We also set up a WhatsApp group so we could message each other beforehand and when we all met outside Parliament it was like we already knew each other. Even though everyone’s story was different, there was a real bond between us.

Meeting MPs was a very positive experience and I could see they were very receptive to what I was saying

Parliament has airport security and you can see the armed police so Dorothy and I felt a bit apprehensive at first. However, we all went in as a group, were shown where we had to go and never felt we were on our own, and it was really exciting to be there.

Dorothy met the MPs coming into the event, told them about Dad and then showed them into the main room where I was with the policy team and other volunteers. Richard the policy manager introduced me to the MPs and told them about my dad. I explained that we needed more awareness of liver disease and also showed them the map which illustrates which regions in the UK have a pathway for early detection of liver disease. I asked where their constituency was so we could see whether they had one.

It was a very positive experience and I could see the MPs were really receptive to what I was saying. I can’t oversell how important sharing your story is because we brought a personal, human aspect to the message that made them say “Oh wow!” and, as  a result, I now genuinely believe that liver disease will be higher up on their agenda.

Find out more about Sara and her father

The post Sara’s Westminster story: “My dad died of MASLD aged just 62, so I went to Westminster with the British Liver Trust to campaign for change” appeared first on British Liver Trust.

Before I was ill I knew very little about the liver and how important it is 500+ functions!

I was diagnosed with liver disease in early September 2018 after an emergency hospital admission. My life was saved in hospital but what could have helped me on discharge would have been more information about the condition I had been diagnosed with and how to live with it. I was bewildered and fearful about the future. Thankfully I was told about the British Liver Trust by a friend.

The information and support provided by the charity was a real game-changer, and over time I learnt I could live with my condition and live well by implementing the suggestions made with the help and encouragement of my GP. This took time, effort and a willingness to change.

Compared to the period around the time I was admitted to hospital I feel great – mentally as well as physically. Although my liver is damaged, I’m unlikely to ever need a transplant as I’ve done everything suggested including abstinence from alcohol and making significant changes to my diet. I take medication as well.

The British Liver Trust is a fantastic charity which does extremely important work. As I got better I started thinking about volunteering for the charity at the grassroots level. Before I was ill I knew very little about the liver and how important it is 500+ functions!

Research suggests 90 per cent of liver disease is preventable so we need to look after it which is why the British Liver Trust’s Love Your Liver campaign is so important. The liver is robust and patient but when it starts to struggle a person can feel and look very unwell very quickly. Sometimes the physical symptoms are obvious and sometimes not.

As a volunteer I was able to discuss liver disease in a very general way and many people seemed to relate to what I was saying.

Volunteering at the Love Your Liver roadshows in Wales in October was a great experience. It was good for my confidence which is taking time to rebuild plus I love to chat! It was also good to talk to people waiting for the screening and scan from a patient and non-professional’s perspective about how important the liver is.

People were in general very surprised that I have a liver condition because I look so well. As a volunteer I was able to discuss liver disease in a very general way and many people seemed to relate to what I was saying. I felt what I had to say was helpful and the feedback I received was really good for my personal growth.

The campaign is not anti-alcohol, anti-salt or anti-sugar but what it does is provide clear guidance about preventative lifestyle changes that can be made: Being aware of units in alcoholic drinks and the sugar and salt content in pre-packaged foods and choosing healthier options plus exercise. These are low-key changes that people can make over time. Alcohol, sweets and crisps, for example, can still be consumed but sensibly and in moderation while also being mindful of units, sugar and salt content.

I’m looking forward to next year’s campaign when I’ll be volunteering again. I look forward to meeting you at the shows!

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