Seven years after being diagnosed with Primary Biliary Cholangitis, Clare was a busy working mum and, although a bit tired, she was generally feeling well. So she was stunned when her consultant told her the medication was no longer working and she needed a transplant. Determined not to be seen as the 'sick mum' or 'sick colleague' Clare put a smile on her face, projected a positive image of herself and told her children "Don't worry unless mum worries" .Thank you for sharing your story with us, Clare
In 2015 I was a full-time working mum of two young children, doing everything in the house and walking my 2 dogs daily. I was going to be tired, but I was floored so I asked my doctor for something to perk me up a bit. When he took my bloods one of the measures for primary biliary cholangitis was up at 600-700 when they said should have been 40. My medical notes showed that it had been like that through my second pregnancy, but no one did anything about it or even mentioned it to me.
At first I was told to stop drinking and exercise more. Then I went for more tests, had a liver biopsy, MRI scan and was diagnosed with primary biliary cholangitis. They put me on various drugs, including urso acid and I carried on with life as normal. I still felt tired, but not as much.
I had annual check-ups, but after seven years the urso wasn’t doing anything and my markers were really high. Then in the autumn of 2021 my home life blew up and I was under extreme stress. By December my eyes were going yellow and my bilirubin had shot up. My consultant said I probably had gallstones or a blockage in my bile duct. A scan showed everything was clear, so then I had a CT scan, an MRI and another biopsy.
My bile ducts had just shrivelled up, so bilirubin was building up in my liver and the only cure was a transplant. Apart from the urso acid, I was told to stop taking the medication because they didn’t know if that had caused it. I wondered if it was stress or if my liver had just had enough.
My son was in Year 7 and my daughter was due to do her GCSEs that year and I wondered how would they react if they thought they were going to lose their mum?
I couldn’t control my liver, so instead I got busy with things I could control. I got on with life with a smile on my face by being a good mum, exercising more, walking the dogs and watching my diet. And I had to work – someone had to pay the mortgage.
I told a few friends and obviously my family, so I had enough people to support me. I was getting yellower, but could live with that as everyone else was too polite to question it. I didn’t want to be the sick mum, the sick woman at work or someone who had people tipping their heads and asking: “And how are you?” I wanted to be the best I could because I got the impression that the decision to put me on the list would be about behaviours, outcomes and how quickly I would recover. And if this was going to be it, I wanted people to remember a smiley, positive supermum.
I was put on the liver transplant list, but would have to get much more poorly before I got the liver. I'm a single mum. How poorly did they want me to get?
By the middle of June I was put on the transplant list, which was a big relief, but I would have to get much more poorly before I got the liver. I totally got it, but really struggled with that too. I’m a single mum and my children need me. How poorly did they want me to get?
I’d lost weight and was jaundiced but if I put on my sunglasses I just looked tanned. People just kept telling me I looked great, which was the weirdest thing. In the meantime I went to Leeds every eight weeks and they recalculated my place on the list each time.
When winter started to kick in I started feeling sicker and looked more yellow. Everything started hurting – standing in the shower sent massive pains through my legs, I couldn’t put fuel in the car because that hurt too much and the itching got a lot worse. I was trying not to scratch with my nails because I was drawing blood, so instead I would press on the itchy area and twist the palm of my hand. My thighs were black from bruising and I started bleeding and it just didn’t stop.
My sister got married at the end of October and I was the maid of honour. I’d never been self-conscious until that point, but didn’t want to be there looking like a minion in a bridesmaid dress so I bought a ton of makeup, took a deep breath, arrived there with a smile on my face and didn’t take it off until two days later when we left. I was exhausted and some of the pictures are horrific – I wasn’t even yellow anymore, but verging on green but I didn’t want to be remembered as Mel’s poorly sister. At the wedding I danced the night away, talked to everyone and had the best time doing it. I think my dad was struggling with it though – he kept kissing me on the head and telling me how much he loved me.
My daughter knew everything that was going on. She was 16 when it all started going wrong and there was no way I could pull the wool over her eyes. She was like my little rock but I never told her mum would be gone if I hadn’t got the transplant. My son was only 12 at the time and didn’t really know what was going on. I just said “Mum’s got a poorly liver, but don’t worry mate, I’m going to get a new one”.
I told them both “You don’t worry unless mum worries” and they took their lead from me.
From Halloween onwards the itching got worse, the bleeding heavier, the bruising more severe and the pain unbearable.
One day I sat down at my computer at work and thought “I can’t do this.” I’d never thought that before and I’m filling up now just thinking about it. But I was really upset when I saw my consultant in December and they said I was still “robust”. Who wants to be called that?
On December 21st I told my boss that I had to stop work in January and at one o’clock that day I got a phone call saying there was a liver for me. I said something obscene down the phone as a knee-jerk reaction, then burst into tears. Then I told my daughter and she burst into tears. I gave her a big hug, told her I loved her and left. I didn’t even get the chance to say goodbye to my son because he was still at school. My parents cancelled all their Christmas plans, moved in and did everything with my children.
I felt like an ant being sucked up a Hoover. By 5am I was pacing around the hospital, it had been 10 hours and I didn’t think it was happening and I wanted to go home. Then at 6am all hell broke loose, I went to theatre and never looked back.
I asked them to play Gerry Cinnamon before I went under and was singing along to him as I passed out. Then when I came round the lovely liver nurse was with me, holding my hand, telling me that I’d had the drugs, but I shouted out “They’re not working!” and that’s all I remember because I was bobbing in between worlds.
I spent three days in intensive care, because they had no room for me on the ward. I had a great time and everybody was amazing. Then I was moved into my own room and I’ve never been so happy to have Christmas on my own – I was waited on hand and foot.
I was walking around the second day after the liver transplant
From the second day after the transplant I was walking around – by day four I was walking up and down stairs and on day seven I went home. They gave me a massive bag of pills – now I’m down to four in the morning and two at night. As soon as I got home I was active, just pottering around the house and cooking because I wanted to get back to normal. My parents were there until the end of February. I couldn’t have done it without them.
While I was on the transplant list three or four members of my family had contacted the living donor team and I felt so blessed. My sister was the best match – I didn’t want her to do it, but there was no stopping her and she got the green light to be my donor the day after I’d had my operation. My mum and dad were in bits because they were going through it with both of us. My donor was a true guardian angel – she saved me and my sister – thinking about that had me in tears.
I felt an enormous relief at first after the transplant, but then felt scared of this new baby liver I had to look after, then guilt because someone had lost someone so precious to give me this gift. I was so overwhelmed by the amount of people who had reached out and cared for me since the operation. Some though haven’t been able to deal with it – and I found out who my friends are. It’s been eye-opening.
The transplant was the only thing that was going to cure this condition, but there’s a 25 per cent chance it could come back because it’s an autoimmune condition. I still take the urso acid and have been on my best behaviour before and after the transplant. My doctors are really pleased with me and said: “Whatever you’re doing, just keep doing it.” The whole team were just incredible – from the people giving me meals right up to the consultants. They are a bit bossy – get out of bed, do this – do that, but if they’re telling me to do something they’re telling me for a reason.
I’m going from strength to strength – I’m now driving again, walking the dogs, have done some shopping, been away for a few night with friends and ridden roller coasters. All I want is to continue inspiring my children, especially Erin as a young woman.
I’ll never understand why it happened, but I’ve been given this gift and I’m going to treasure it with all I am. I’m a stronger and better person for it. I’m not spiritual but I’m so aware of the gift of life. It’s not about money or shopping or going out, but just stepping back and watching – I find myself doing that a lot now and appreciating the wonder of this world and seeing what my children are growing up into. I’m going back to work soon and I’m really excited about that.
The grim reaper was sitting on my shoulder, but I honestly believe the reason that I am still standing is because of how I looked after myself and how positive I remained throughout this process. Focusing on my children was really important too – for them to be in a world where I wasn’t just wasn’t an option. I was going to fight this.
I wasn’t ready.
I wasn’t done.