Julie first began experiencing symptoms of liver disease when she was just 12 years old and had a transplant three years later. Now 40 years on, her donor is still always in her thoughts and she’s very grateful to them, and her medical team, for saving her life. Thank you for sharing your story, Julie
My childhood wasn’t easy. My mum left me and my sister when I was two and we were in and out of children’s homes and foster care for five years while my dad fought for custody. We then lived with him and the lady who became my mum and her three children.
As a child there wasn’t much food that I enjoyed and as I was moving from primary to secondary school I started getting tummy pains and developed a big belly. I was only 12 but there were lots of rumours going around that I was pregnant. Doctors prescribed medication for my appetite, but it didn’t help. They couldn’t explain the pain and told my mum and dad I had malnutrition because I was skin and bone and had the big belly. Then I had a blood test and that same evening there was a knock on the door – the GP surgery nurse said my blood had clotted so they needed to redo the test. I later found out it was because they couldn’t believe that they were seeing what looked like an alcoholic’s blood in a 12-year-old.
I was referred to a specialist at Grimsby hospital, who immediately said it was something to do with the liver and I was admitted and diagnosed with autoimmune hepatitis. I wasn’t too bad until my mum had to leave and then I started crying because I didn’t want to stay there with strange people. Also, there was test after test and I hated needles.
I began deteriorating and spent more and more time in hospital. Eventually the doctors referred me to a liver specialist in Sheffield Children’s Hospital, where I had my first liver biopsy. Luckily, I was sedated for this.
Transplant is only hope
I don’t remember much about the hospital, apart from a girl with leukaemia teaching me how to make perfume out of flower petals. One morning when I woke up her bed was empty. I was told she had gone home but later found out that she had passed during the night.
Not long after this I was transferred to Sheffield’s Royal Hallamshire hospital, which I hated as in my eyes it was full of old men and women. By this time my stomach was extremely large and the doctors found it hard to believe that my skinny body could bear its weight. When I reached the age of 15 they said my only hope was a new liver.
My final transfer was to the Queen Elizabeth in Birmingham where I had more tests and they had to build me up so I was strong enough to get through the operation. Everyone helped, nurses and patients’ families would all bring me in little treats to try to get me to eat. I was supposed to be on a no-salt diet, but eventually they let me eat what I wanted to at least get some food down me.
I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the operation, but luckily they took the risk.
My transplant co-ordinator was great and made me laugh. He got me a teacher to help with my schoolwork when I was well enough and made sure I had things to keep my mind occupied. I was discharged, but haemorrhaged on my first night at home and ended up back in Grimsby hospital where they gave me blood for a couple of days and then transferred me back to Birmingham.
I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the liver transplant operation, but luckily they took the risk.
I was now losing the strength to carry on, but luckily my parents were there to support me. They rented a flat near the hospital and there was always someone with me from when I woke in the morning to when I went to sleep at night. Eventually my sisters came too and went to local schools – one sister has learning difficulties and didn’t really understand what was going on. Our neighbours back home were also great, they sent me letters and my favourite spaghetti Bolognese when anyone was visiting. I am so proud of all my family – it must have been difficult with me getting all the attention.
Mealtimes were still a challenge and my dad would get angry when I didn’t eat, but if he hadn’t pushed me, I would never have pulled through. I went into a coma while waiting on the transplant list which scared everyone, although I came out of it a day later, I wasn’t making any sense for several hours.
Eventually a donor was found, but the liver wasn’t suitable. Some more time went by, I’m not sure how much. I was on drips constantly, either feeding me or giving me blood and was getting weaker. Then another donor became available and this time it was suitable. I asked if I could have some soup first (I’m not sure why) but I wasn’t allowed to eat. I hadn’t eaten much that day and just because I wasn’t allowed, I really wanted to.
I was given my pre-meds and could see the worry in my parent’s faces and had to stay brave for them. When the time came for them to wheel me to the operating theatre, my mum and dad came as far as they could, holding my hand. I still managed to keep up my brave face but deep down I was scared stiff not knowing if I was strong enough to pull through and if I would ever see my mum and dad again.
I was only the 22nd person to have a transplant at Birmingham – the operation lasted about nine hours and I woke up in intensive care. As I was on life support, they gave me a pen and paper to communicate with. I didn’t like it when they turned the life support breathing down as it meant I had to breathe on my own and it was really difficult.
Eventually I could breathe on my own and it felt good being able to talk again. I started to eat slowly but the food tasted funny with salt in it.
Liver rejected
I also had to learn how to walk again and go to the toilet. The toilet was the worst thing, I cried each time I tried unsuccessfully as I knew they would need to put the catheter back in. It seemed to take so long to get back on my feet, but eventually they let me go to my mum and dad’s flat for a couple of hours. One day I think I may have done too much – we family were visiting and that night on the ward I had a fit and woke up on drips. After that I had up and down days and when there were more better days the doctors let me move to my mum and dad’s flat, but I had to visit the hospital every day. Once my visits became once a week, we moved back home.
Family and friends put on a welcome home party, to which I was driven in a white Rolls Royce and things started to go really well, I went back to school and at the age of 16 I started a youth training scheme to be a stewardess and travelled round Europe.
Unfortunately, three years later my liver rejected and I was back on the transplant list, but they amended my medication which seemed to work, I was stable again and back off the list. My bloods have always been at a stable stage which has worked well for me, but I don’t think they will ever be perfect.
I am now 55, fit and well, and have had 40 years of living a normal life and two children, although the pregnancies were not easy.
I would like to thank all the doctors, nurses, friends and family who helped give me a life, but most of all the parents who made that difficult decision to donate their young child’s liver. I will never forget the donor, they are always on my mind and the fact that they lost their lives and I will always keep part of them alive with me.
