Initially Paul wasn’t worried when told he had fatty liver disease because he felt fine. However, as he began to experience frightening symptoms and was placed on the transplant list he wished he had taken more care of his liver. Thank you for sharing your story, Paul
I was diagnosed with type 2 diabetes about 15 years ago. My local hospital said I should watch what I eat and drink, but it went in one ear and out the other. I attended a diabetes course where they talked about diet, but when you don’t feel too bad you think it’s all rubbish. I thought I was doing enough exercise because I went to the gym twice a day and walked 16-18 miles every Saturday. Whenever I went to the hospital they said: “It’s alright, just keep an eye on it”.
In 2012 I went to my GP because I was feeling tired, it hurt when I passed urine and I was on and off my food. My blood tests showed abnormal liver function thought to be associated with fatty liver disease, which was purely down to my diet. The hospital again told me to watch what I eat, but not to worry and I’d have appointments every six months.
Then in 2012 I was diagnosed with Non Alcoholic Fatty Liver Disease. I felt great at first, but gradually started to feel worse and by 2021 I was in a lot of pain, had diarrhoea and no appetite. After a blood test, my GP sent me to hospital where they found internal bleeding, so I needed blood transfusions and iron infusions every two months.
In June 2022 I started feeling really dizzy and ill, fell to the floor and bled and bled out of my mouth. My wife rang 999 and the last thing I remember was hearing the paramedics say: “Scoop and run now”. They blue-lighted me to A&E and the duty liver doctor called a specialist at the Royal Free Hospital in London who said he had a theatre, but no team or intensive care bed, so the hospital’s theatre personnel came to the Royal Free with me and did the Tipss procedure there. I was then blue-lighted back to intensive care and put on a ventilator for eight days. My family was told I was unlikely to make it.
After a couple of weeks I went home and felt like a new man, but then my stomach started hurting and kept growing. I rang the hospital’s liver nurses who told me to come in to have it drained. It was horrendous – they put a tube in your stomach and then gravity feeds the fluid out. They took 12 litres over six hours.
I was drained every two weeks and had iron and blood infusions every three weeks because I was still bleeding internally. For over a year I could only wear tracksuits bottoms and trainers with no laces and my wife had to dress and undress me because I couldn’t bend down. I was also having falls but couldn’t get up because of the amount of fluid on my stomach. In March, 2023 I was sent to the Royal Free for a transplant assessment. Medical professionals gave me lots of information, but I was really depressed – speaking to a patient who had been through it would really have helped me. I was put on the transplant list in March 2023.
One morning in April 2023 I got really aggressive and didn’t have a clue who or where I was. My wife rang 111 and I was taken to my local hospital because I had toxins in my brain from the liver. It was a really horrible experience and I was in hospital for a long time on God knows how many drips. The nurse asked me what day of the week it was – I didn’t know and when my wife tried to give me my insulin I got upset because I didn’t know what was going on.
The doctors had declined a donor liver for me because I was so unwell. I was really upset
In April 2023 I was in hospital having a transfusion and I passed out. When I came round the doctors told me I had just been offered a liver, but they had to decline it because I was so unwell. I was really upset and had to stay in hospital for another two weeks. I was now just 12 stone, I had been 16 and I was so ill, just skin and bone, and I cried and cried.
One month later I was offered another liver and told to go to the Royal Free as soon as possible. I’d previously been told there was a 50/50 chance I wouldn’t survive and my consultant had even suggested making a funeral plan. Would this be the last time I said goodbye to my wife and kids? Who should I ring, what should I say? And my thoughts were with the donor. Who was it, how old were they and what had happened to them?
When the surgeons were ready for me, I walked down to theatre where everyone was standing in their gloves, masks and boots and got on the bed. They put a canula into my arm and said they would give me stuff to make me sleep. The next thing I knew I was in intensive care with all these machines and tubes and I was discharged three weeks later. I couldn’t fault the service, but it was the most frightening experience of my life and a very steep learning curve.
I fell over a couple of times afterwards and smashed my ribs, as I was trying to do to much and was told to slow down. A few months later I was back in hospital for eight days with an infection and the tubes in my liver had swollen up. I was home for a week-and-a-half, got another infection and had to go back in for eight days. All the doctors and nurses knew me by my first name now. It was embarrassing and I’d had enough, but without the medical expertise I wouldn’t be here today.
I now eat a healthy diet and exercise gently. I think I’m doing my liver donor proud
I now have my bloods done every three weeks, then see my consultant who adjusts my medication – it’s less every time and I won’t need to see him as often, which is a positive. I now eat a healthy diet, exercise gently and do everything I am advised to do and think I’m doing my donor proud. I also take lifelong medication to stop rejection.
When I felt ready to go back to work my employer said: “Have a bit more time off” then let me go as part of a larger round of redundancies. I’d been there for 27 years. At first it really hit me, but I’ve got a new job now and am staying positive. I’m lucky – I can walk unaided, my appetite has come back, I’ve got the family and I’m happy.
On the day of my transplant my wife ordered a tree and silver plaque in my donor’s honour and we planted it in our garden. Whenever I look at it I think how lucky I am but how sad it is for their family. My family say they’re OK but they’re on edge. If I lift something they say I’m overdoing it, always want to know where I’m going and for someone to go with me. My wife texts me three/four times a day while she’s at work and if I don’t answer she sends her mother round.
I should have taken heed at the very beginning, rather than thinking it would never happen to me. There needs to be more awareness of the liver – you talk to people about liver disease and they say: “Shut up, you could be hit by a bus tomorrow”. Well, you’ll feel like you have been when you’re told you need a transplant.
One of the liver nurses thought I would be an ideal person for liver patients to speak to for more information. I will tell people how it is and won’t brush over how hard it’s going to be for them and the family, but if I can help just one person then I’ve achieved what I wanted.
