Chris was just 29 when he was diagnosed with Alpha A1 deficiency which damaged his liver. He was put on the liver transplant list, but his condition deteriorated significantly over two years and he was moved into intensive care in December 2022. On the morning of New Year's Eve Chris was put onto end-of-life treatment, but just three hours later he was told there was a potential liver for him. However there was a catch... Thank you for sharing your story with us, Chris.
It was the August 2020 when I realised that my shirt had got much tighter in the space of a week, so I went to the doctors and had a blood test. Back at home I was sleeping like I had really bad flu and my wife said I’d turned yellow and made me go to A&E. They sent me to the gastric ward where I stayed for two and a half weeks. A liver biopsy confirmed I had Alpha A1-deficiency, an inherited condition that can damage your liver and lungs. It is caused by a mis-shaped protein that can get stuck in your liver and normally affects people in their seventies – I was just 29. The next thing I knew I was being told I had liver failure. I asked if a child of mine would inherit it, but they couldn’t say.
I’d had Guillain-Barre Syndrome, a rare genetic autoimmune condition which causes numbness, weakness and pain in the limbs, since 2018 and my doctors thought that may have accelerated damage to my liver.
I was discharged and told I’d be treated as an outpatient, but a liver transplant could be a possibility. I was only home for a day or so when I cut myself shaving and wouldn’t stop bleeding because I had a very low platelet count. I went back to the hospital and was put back on the gastro ward and then transferred to Birmingham to be assessed for a transplant.
We were still in Covid so I was not allowed visitors, but I was always very positive, thinking ‘I can do this – my story isn’t finished yet’. I was there for a week and on my daughter’s fourth birthday I was told I was eligible. It was a shock and very lonely.
I was discharged and surprised my daughter at home later that day, but she didn’t understand why I hadn’t been there for her. As she got older she started asking more questions and I explained: “Just like your toy, my batteries are running out and the batteries are out of stock.” One day she asked: “Why don’t you just order them from Amazon?” I had to explain they were special batteries.
I was already driving very short distances because of concentration problems, but in June 2021 my consultant told me to stop completely. I started really going downhill then and three weeks later I had to stop working as a manager of a leisure centre. I was really tired all day, every day – some days I slept for 20 hours.
Then in August 2021 Birmingham Hospital said they were really snowed under with Covid and receiving organs but didn’t have any beds, so they had to pause transplants. I started to panic, but the Royal Free in London were still doing them and I was asked if I’d like to be transferred. At first I didn’t know, but talked it through with the transplant coordinators in London who said my chances would be slightly improved with them, so I agreed.
I had my first offer of a liver, but it went to someone who needed it more than me
My breathing was getting very heavy now because my lungs were filling up with fluids and I was admitted to hospital for three or four days at the beginning of October. Ten litres were drained from my right lung, a few weeks later it was 17 litres. I had my first offer of an organ at this point, but it went to someone who needed it more than me and I was fine with that.
I was readmitted to Swindon hospital on 3rd/4th December with low sodium levels and told it wasn’t looking great and I would probably stay in hospital until I was transplanted. I was there 100 per cent mentally, but struggling with concentration and I could feel myself deteriorating physically. Eventually I got a bed in London on 17th December and was taken straight into intensive care and put on life support.
I put a photo of myself in intensive care on Facebook explaining the importance of organ donation and a friend messaged saying I should put a donation for a charity on there. So I decided to fundraise for the British Liver Trust and within a week I’d raised £2,500. I also wrote to my local parish council and they fundraised for the Trust for a year as well and raised another £2,500!
I spent Christmas Day in intensive care. I facetimed my family, but took a bit of turn that night – the fluid was continuously building and started bursting out of my skin. I had a CT scan at 10pm and was told it was a case of days rather than weeks for me, which obviously no one wants to hear at Christmas. I was on a machine 23 hours a day to take out as much fluid as possible to prolong my life and offered my second organ on 27th December, but it wasn’t suitable. That was a real downer. A psychologist came to speak to me about it and she gave me the boost I needed to keep going, but it was incredibly lonely.
My family felt helpless because I needed a liver from a brain-dead person
My family felt helpless too because I needed an organ from a brain-dead person and was getting worse each day. I could no longer move now because of the fluid build-up and my body was black and blue. At 9.30am on New Year’s Eve I was told I would now be receiving end-of-life treatment.
But at 12pm I was told they had a potential organ, but there was a catch. I would have to have surgery immediately but the liver wouldn’t arrive until later on that day. If it wasn’t fit for purpose I wouldn’t recover from the surgery as my own liver would already be out. Even with the surgery that could still be it, but what choice did I have?
I rang my wife and mum before I went into theatre but not my daughter. She was only five and I didn’t want her to see or remember me with loads of tubes hanging out of my body. I recorded a message for her but asked my wife not to show it to her unless I passed.
My wife was contacted regularly during the operation and after about three hours they told her my liver was out. They phoned again when the new organ arrived. Then at two minutes to midnight on New Year’s Eve the surgeon rang and said the transplant had been successful. My wife woke my daughter up to tell her that daddy had his new batteries and they watched the fireworks together.
I woke up at 8am on New Year’s Day. On 4th January I had internal bleeding and was taken back into surgery where they replumbed in my new liver and put in quite a few more new drains. I was in intensive care for two weeks afterwards and didn’t get out of bed until another week later. I was discharged at the end of January and that was the biggest struggle because I had been in hospital and bedbound since the beginning of December.
I used a zimmer frame at home but could only do about 15 steps at first, I had an NHS physio and got a private one too twice a day to get myself moving. Every day felt like I was getting stronger and I started wondering if I really wanted to go back to the leisure centre. I’d been working 60 hours a week before and was now looking at life a bit differently, so I got another job as a deputy clerk at the local council. Just before that we went on holiday to the Isle of Wight and I then in May I was ready.
I’m now cured and lead a normal life. Every day when I take my tablets I know I’ve been given a second chance because someone passed away and their family decided to donate their organ. I cannot say how thankful I am. It’s people’s own decision whether they want to register as a donor, but I would advise them to make sure their close family know, because they have the last say.
My daughter is my whole life and she was my drive to get through this. I wasn’t ready to go, it wasn’t my time. I want to see her grow up and be there later in life when she gets married and has kids of her own.