There was always a chance that Lisa’s primary biliary cholangitis would recur, but her consultant said they wouldn’t expect to see anything for at least five years. So it was a shock when Lisa’s health began declining rapidly just a year post-transplant and we were told she was likely to need another transplant. Without being too melodramatic, I thought: “Is she going to make it?”

Lisa felt a lot of guilt because the amazing gift she’d been given by her donor and their family was failing for reasons she couldn’t control and we were worried a clinician could decide she was too much of a risk for a second transplant. When we were suddenly told in November 2024 that she would be listed, I thought: “Oh, wow!” but it can sometimes take a number of years to be lucky enough to get another donor, did we have that time? But at 5am on Christmas Day the phone rang and Lisa said: “Oh my god, it’s Kings!” and we were on our way to London.

The surgeons had said there could be more complications with a second transplant because of the scar tissue and the close proximity to the previous one. I’m rarely pessimistic, but there’s always that dark little shadow in your soul that thinks something could go wrong. Lisa and I had to have conversations about what to do if the worst happened twice within a couple of years. It’s pretty brutal.

Pacing around and just waiting while Lisa was operated on was emotionally exhausting. While I was obviously keeping in touch with family I just wanted to be on my own, but Lisa has so many people invested in her story and they all wanted to know how she was getting on. While the level of support was amazing, answering messages left, right and centre was draining.

Strong and positive

As a carer I had thought things would be easier second time around, but it was more of a struggle emotionally because I knew what Lisa was going through and the complications that could arise. However, she is so incredibly strong, positive and proactive even when things go wrong as they often do, so if I was anything but strong too, it would be kind of defeatist.

For the first six or seven weeks after the transplant Lisa had an ongoing infection which prevented her liver from kicking in properly, but then all of a sudden it started working and she’s been very stable for weeks now. However, because she’s been on extremely strong medication for five years, she’s at stage one of acute kidney injury. It’s being monitored and we hope it stays at that stage – otherwise we could be looking at kidney failure and transplantation. Lisa knows there’s a chance of that, but we’ll face that if it comes and with the same strength and stoicism that she has faced everything else.

Lisa has become so knowledgeable about liver conditions and all she’s done since her diagnosis is help others. She’s made so many connections across the world and her blog on what to take to hospital has resulted in people with autism and anxiety messaging her to say how helpful it’s been. It’s cathartic thing for her and helps her feel she’s not just sitting there waiting to see how she is week on week.

Lisa was incredibly jaundiced before the second liver transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing.

There’s still a lot of stigma and we’re grateful to the British Liver Trust for their work in educating people. Lisa was incredibly jaundiced before the second transplant and people would stare at her and take their phones out to take a photo. Seeing that side of the human race was very depressing. Most of the time I chose to ignore it but sometimes it got so obvious that I would look them in the eye as if to say: “Come on, think about this!”

Often when I was at work, I would turn myself inside out wondering whether Lisa was experiencing that with no support and towards the latter stages she avoided going out in public altogether because she got so many stares. Out of the whole journey they were probably the most difficult times. Seeing that directed at someone you love is cruel and upsetting, especially when you know what they are going through.

It’s not necessarily because people have made bad choices, they’re just not educated. I’m sure some of the kids who took the photos shared them with their friends and I hope somewhere along the line someone said to them: “My auntie has a disease and that’s why that person is that colour”. Educate yourself rather than judge.

We’re both grateful to the British Liver Trust for everything they do, not just for us but for everybody with different liver conditions and all their varying degrees of negative and positive outcomes. We were therefore humbled when the organisation asked us to become their ambassadors. It’s given us an official way to get the word out about early diagnosis, Love your Liver and connecting more people to the donor register. If you or a loved one are diagnosed with a liver condition, I would always advocate for the British Liver Trust. The information and support on their website is truly remarkable, including the Living With pages, events and publications. We invested heavily in them when we were educating ourselves on Lisa’s condition.  There are also many people like Lisa who give up their time to tell their stories and I think people can find a lot of solace in seeing where they are physically and emotionally afterwards.

Support from family and friends

Because Lisa has been through so much, I decided to nominate her for Lorraine’s Woman of the Year in 2023. While Lisa knew I’d nominated her, she didn’t know she was in the top three, so when we were invited to the studio to meet Lorraine, I told her I’d won a tour of TV studios in a competition. During that ‘tour’ Lisa ended up on the set and was interviewed by Lorraine! It was a bit of a fairy-tale moment and I was blown away when the public voted for Lisa and she won the title.

Even though we have a lot of support from family and friends, it’s still been a difficult year. I also lost my mother and stepfather within seven months of each other, so you think, crikey, what’s next? But you either fold or you fight and Lisa and I always try to stay as positive as we can.

As a carer being present and educating myself on everything Lisa’s having to do, like what drugs she’s on, what levels they are is very important. It would be very easy for me to let her deal with it all, but being there for her has also helped me. We’re in a great place now and long may that continue. Lisa will be gradually phasing back into her job which she absolutely loves – and we’ll just keep plugging away.

Women are totally the stronger sex, I’ve no doubt that that’s the case and Lisa’s extremely strong. That’s why I’m able to cope so well.

Read Lisa’s story

The post Justin’s story: “As a carer I had thought things would be easier with a second transplant, but it was more of a struggle emotionally” appeared first on British Liver Trust.

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.

My husband was self-employed, but in 2019 the work was reducing. He felt anxious and afraid of being in his fifties and not having a living, so began drinking quite a lot. His parents and the children asked him to cut down, so he went to his GP but they weren’t helpful and didn’t refer him to any alcohol services. Then when Covid and lockdown hit, his work completely stopped and the drinking volume went up. He was drinking around eight cans of cider a day, gaining weight but eating a lot less and becoming very grumpy.

He went to the doctor a few more times and tried AA, but as an atheist the references to God didn’t sit well with him. We weren’t aware of any other options, even though we did ask. He should have been helped a lot more at this point.

In April 2022 he got a parasitical stomach bug which gave him the most horrendous sickness and diarrhoea for four weeks. He literally couldn’t stand up and was so dehydrated that I took him to hospital. I expected him to be there for a couple of days, but within 24-48 hours he was in intensive care where he stayed for six weeks. His kidneys had completely stopped working and his liver was also damaged and unable to fight the bug.

He was on dialysis and intravenous antibiotics but going downhill. Communication with the hospital was absolutely appalling – I would visit him at least once a day but couldn’t find out anything because the doctors and nurses were just not talking to me. I made lots of complaints to PALS.

I Googled the British Liver Trust and they were amazing. The website has the best information available and the Nurse-led helpline helped me many times with some really difficult conversations when my husband’s care was not great and I was being ignored. The hospital didn’t have its own liver unit and the Trust’s nurses told me how to push them to contact their sister hospital which did and get some different treatment options. It worked and my husband was given a drug which kick-started his kidneys and got him off dialysis.

The British Liver Trust’s nurses told me not to give up

And even though he was hallucinating due to hepatic encephalopathy (HE), my husband wasn’t prescribed Rifiximin. I raised this with a number of doctors and called the Trust’s nurses who told me not to give up. In week four of intensive care I spoke to another consultant who said: “Of course he should have it” and it was finally prescribed.

After 23 days in intensive care and 2 weeks on the gastro ward the hospital discharged my husband because they needed the bed, but it was too early. He’d had no physio in intensive care, had lost 40 kilos, still had HE and couldn’t walk.

How was I expected to keep a full-time job and care for two children when it wasn’t safe for him to be  alone? What if he fell down the stairs? He couldn’t go from the bedroom to the bathroom or down to the kitchen and they said I’d just have to put a tray of food in front of him for eight or nine hours.

So I was on the phone to the Trust’s nurses again who told me what to say to get some things in place, but the hospital still sent him home with no care, no physio – nothing. Forty-eight hours later he was back in A&E and in agony. They were so understaffed that I had to leave the kids at home and go up to the hospital on the bus four times that day to give him food and water. He was moved onto the ward but discharged again after five days with no care package in place. There was no care from the GP or community nurse either. He was so weak, had to use a wheelchair and couldn’t move or get to the bathroom in time. He fwll once and the children and I had to lift him up off the floor and get him back to bed. They were just 12 then. He wasn’t in control of his bowels and they had to see that too.

When he came out of hospital he was referred to a unit called MDU which deals with kidney and liver outpatients who need more care. You go for regular blood tests and, depending on the results, the doctor there might look at your medication and increase or decrease as required. That service has been very good, but it’s an ongoing battle.

My husband was told if he ever drank alcohol again he would be dead and hasn’t touch a drop since

When my husband was first diagnosed, he was told if he ever drank alcohol again he would be dead and hasn’t touched a drop since. They also said he might need a transplant, but it was only now that he got connected to the alcohol services – they were all there before, but we had no idea.

He got his first appointment with a gastro consultant over six months after coming out of hospital when he was still in a wheelchair and couldn’t walk. I’d done loads of research on the brilliant British Liver Trust website and went along too with lots of questions. The consultant was marvellous and answered them all. She believed that if my husband’s blood tests continued stabilising, he would be in the area for a liver transplant.

However, because the whole experience has been so traumatic, my husband was now on antidepressants. She said he would have to come off them, improve his mental health, be out of the wheelchair and physically able before he could be considered. We paid for private physio, and in April 2023 he went for a transplant assessment and was put on the list. Within six weeks he got the call, but had a complete panic attack – shaking, vomiting and saying: “I can’t do it”. It was clear to me that he had PTSD from being in intensive care without any mental health support.

So again, I pushed all those buttons, with help from the British Liver Trust. I believed both the GP and liver unit had a duty of care towards his mental health if that was stopping him from getting a transplant, but nobody could help so my family clubbed together to get him private mental health support. Once he’d dealt with the PTSD and anxiety, he was back on the transplant list on 29th August 2023.

He’s been stable for around a year now, can walk a mile, do three-four hours activity a day, cook a meal, do the washing up, go to the shop, but he has to rest and put his feet up. His joints really hurt all the time, he needs a lot of sleep, and he’s not strong. He can’t open a jar of pickles or carry a hoover up a flight of stairs.

Battling for bloodtests

The GP should be giving him blood tests every month and passing them to the liver unit, but they just don’t – we’ve battled with them for ten months and have now given up. They also wouldn’t prescribe the Fortisip protein drink because it was too expensive. I asked the hospital dietician to send an assertive email, but the GP still wouldn’t do it, so in the end we had to ask the consultant.

I’ve had to build up relationships with consultants who can fill out prescriptions and then hunt them down, this can mean ringing the hospital three or four times a week. If that fails it means sitting in reception and waiting to bump into them. We’ve also had letters with appointments that arrive after the appointment has been.

I’m a very determined, annoying person who won’t give up and without me I don’t think my husband could have fought those battles because he was too ill. The fight is exhausting and I wonder if many, many other people are not having the right treatment because they can’t fight.

There are a lot of brilliant people working in the NHS, but it’s completely broken so you need to know what conversations to have and buttons to press so you can support your partner. Be resilient and don’t give up. Things do improve, but it can take months.

Hepatic encephalopathy has completely changed my husband’s personality

Encephalopathy has completely changed my husband’s personality, he has sleep issues, can’t remember things very well or process information like he did before, needs notes and repeated reminders. He used to be kind and empathetic, but is now very grumpy because he’s in pain a lot of the time. He often can’t communicate because he can’t find the right words or process communication coming to him, fill in forms or read a book and we’re talking about a very intelligent man who was very capable in full-time work for 30 years.

There’s also a very different relationship between us now as husband and wife. Because of the encephalopathy he doesn’t hug or kiss me or ask how my day’s gone. I’ve tried to make him learn to ask and also act as a bridge between him and the children by spoon-feeding him things to say to them. It’s like having three kids. I’ve been under huge stress trying to keep a job and keep him and the kids ok. Both children have been under a lot of pressure too. We’ve had mental health support which has been really important and friends give us lots of support too.

My husband receives disability benefits, but there was no help accessing those either. It was a horrendous process because the people assessing you may or may not understand about liver disease or encephalopathy. I had letters from the consultant and hospital discharge letters providing independent evidence of what he could and couldn’t do, but it still took eight or nine months before we got any payment. It’s difficult if you don’t understand a patient’s rights and the NHS and benefits system is an absolute minefield.

Don’t take no for an answer

Getting information is key and I recommend visiting the British Liver Trust website, particularly on questions to ask a doctor and when discharged from hospital. When you’re stuck the Nurse-led helpline is absolutely invaluable too. If you’re looking for support don’t take no for an answer because it is out there it’s just a question of finding it. I would also recommend doing some research if you have family members who need to know what’s going on in a kind and sensitive way. I had to tell my kids that the doctors didn’t know if their dad would live or die and ask them if they wanted to say goodbye to him in intensive care. I really needed help with that conversation. The Trust’s nurses really helped with this too.

Carers have a heck of a lot on their plates, we’re not going through the physical pain but a lot of other challenges and that’s why I also joined the British Liver Trust’s online support group for carers. There are people on there with partners who have had their transplant, or are on the list or where I was a year ago – in hospital and panicking. It’s a really great forum to share those stories because you just need a glimmer of hope that things will change or improve. When you see people who are further along and coping, it shows that you can do it too.

My husband could have died in intensive care, but he’s alive and able to function for half the day because of the treatment he’s had and the medicines that he’s on. He’s a Dad to our children and that’s incredibly positive.

*Name has been changed as Laura wishes to remain anonymous

The post Laura’s story: “The British Liver Trust’s Nurse-led helpline helped me many times with some really difficult conversations” appeared first on British Liver Trust.

Symptoms

My wife Lisa was diagnosed with primary biliary cholangitis (PBC) in March 2020, a chronic, hereditary form of liver disease. Since then, our lives have turned upside down, an emotional rollercoaster to say the least. Thankfully, I can consider myself one of the lucky few who has come out at the other end, and I can still wake up next to my remarkable wife.

Lisa’s mum was diagnosed with PBC at an early age, so we have always had a clear understanding of liver disease, and how to manage it. Lisa has always been conscious of her liver, remaining active, and keeping a healthy lifestyle with minimal alcohol. All of which contributed to her positive recovery.

What we did not expect was how quickly everything unfolded and how far along her condition was. The only real symptom that started to show was an itch that slowly became worse and worse, to the point she was itching 24/7. Looking back, perhaps we should have considered this a symptom sooner, but once the insistent itching started to cause her pain, it was her mum who pushed her to speak to the doctor for a blood test. The results came in at 11pm from our doctor – that’s when you know something must be wrong. The doctor explained that Lisa had to be admitted into the hospital as soon as possible. At this time, I was about to start a new job at 6am the following morning that I couldn’t get out of. I had Lisa in the back of my mind the whole day, trying to understand what was happening to us. As soon as I finished work, I rushed back to see her.

Diagnosis

Thankfully the level of care and follow-up was second to none, she received several scans, tests, and a biopsy. The disease was so far developed that they quickly diagnosed Lisa with an aggressive form of PBC called ductopenia.

I spent 10 years in the Parachute Regiment, so I’m no stranger to stressful situations, but watching a loved one go through a trauma like this made me feel completely helpless. There was nothing I could do, the whole process was out of my hands. When it’s yourself, you’re able to process what is happening and work through the pain, but having to watch the one you love suffer such immense stress and not know the outcome is simply horrifying. The only thing I did have control over was offering my unconditional love and support.

I went to a very dark place as a husband. I was emotionally drowning.

Transplant

After only a few short months, we received a call in October informing us of a potential donor for a liver transplant. We never thought that a couple of days later Lisa would be in surgery. We spent two weeks in hospital, everything was completely Covid secure and the staff were incredible. Every day I would stay in the hospital with her for at least 4 or 5 hours.  We were fortunate enough to attend our local hospital near our home and family, and with my job providing me some time off, I could make sure Lisa had everything she needed.

I have never felt more emotional and anxious than in the days between Lisa receiving the call, undergoing her operation, and the recovery process. I will never forget the next morning after the transplant. The phone rang at 7:10am and the nurse asked if I wanted to speak with Lisa. I almost fell out of bed. I completely fell to pieces. All my emotions poured out of me at that moment because I knew everything was going to be okay.

Recovery

I am so grateful and in absolute awe of the miraculous work the NHS achieved, and how strong and positive my wife has remained throughout the process. I am also amazed by the level of support we received from friends and family. My phone was filled with messages of love and guidance from so many kind people on Instagram and messenger, it was something that helped keep my spirits up for Lisa’s and my own sake. Thankfully, Lisa has such a strong family unit that we all worked together to keep positive and optimistic.

During this time, I’ve learned the power of communication. By reaching out and talking through your emotions and situation, you gain a support network. This can help you learn from others’ experiences so that you can begin to understand what to expect. This is where the British Liver Trust is brilliant, the Support Groups help bring everyone together regardless of what stage they’re at, making sure no one has to deal with liver disease alone.

We are now both working extremely hard to raise awareness of liver disease. My wife has been actively blogging, sharing her experience on social media, and talking with the press to help educate as many people as possible. We want to raise awareness of what the disease is and how to care for your liver. We also want to help reduce the unfortunate level of stigma attached to the disease.

We both feel incredibly fortunate to have come out at the other end of this journey. I have a whole new appreciation of life, and I am forever grateful to the donor for giving us the gift of life.

The post Justin’s story: “I am so grateful and in absolute awe of the miraculous work the NHS achieved, and how strong and positive my wife has remained throughout the process.” appeared first on British Liver Trust.