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Around three million people in the UK have kidney disease

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Billi’s story

Billi’s story

Born with kidney problems, Billi Stone didn't experience symptoms until he reached secondary school. A hard road lay ahead, involving his mental health as well as his physical health.

Billi

I started always feeling cold, completely lost my appetite and felt really tired all the time. My teachers said I was really pale. At Christmas that year I didn't get off the sofa and I wouldn't even eat a turkey sandwich. Everyone was having a go at me because they didn't know what was wrong, they just thought I was being a teenager.

Eventually the GP gave me a blood test and at 2am an ambulance turned up out of the blue and rushed me straight to Bristol Children's Hospital.

I had no idea what was going on and I think I was in shock. I got a diagnosis of stage five kidney failure the next morning.

I had to stay in hospital a few months, because obviously I had to go straight onto dialysis and get used to it. It was hard. Staying in hospital is just the worst thing for me.

Back to school

After a while people started talking about me going back to school and I was really stressed. How was I meant to juggle dialysis with school?

Initially I refused to go back to school, but eventually I did, and then I managed school and dialysis for about two and half years. At that time I also had other stuff going on. I was in foster care for some of the time and I was bullied at school because of my kidney failure and because I'm visually impaired.

So I was deteriorating mentally, my emotional strength was reducing and I was really struggling to cope. I was pretty much suicidal.

I was dialysing Monday, Wednesday and Friday afternoons, leaving school at lunchtimes. I would get home from the hospital at 6pm, exhausted, and sleep until the early hours. Then I'd be wide awake and play on my Playstation. So I was really tired on my two full school days – I'd fall asleep in my Maths lessons.

Reaching breaking point

In the end, around Year 10, I just stopped going to school. Then one day I wasn't going to go on dialysis that day. Just like, no, I'm not doing it.

The nurses tried to persuade me, but I just refused. In the end they had to sedate me because I was so angry. I agreed to dialyse in the end, but I remember feeling awful throughout it.

Dialysis had just pushed everything back – I felt like my life was on hold and I'd grown to hate it. During the sessions my skin felt really weird from the inside – it's hard to explain. I didn't really have anyone my age on dialysis to talk to. And they tried to make me have school lessons while hooked up to the machine. I couldn't write properly because of the tubes and every time I moved my hand the machine would beep at me. It just wasn't right.
Almost the worst bit is that my diet was so restricted. Any time anything bad happened in my life I'd just go off with a mate for the day and do and eat all the stuff I shouldn't.

Light at the end of the tunnel

It was weird, because the day after I refused dialysis, a donor kidney came through for me. I'd been on the waiting list for about four years. It was just a normal Saturday night. I had a mate over and we were playing Playstation while my mum cooked spaghetti bolognaise, our favourite. She came up with the phone saying we'd had the call. I thought she was joking for about the first 10 minutes. My mate had to convince me it was real.
Initially I didn't know how to feel: scared, happy, excited. Then fear kicked in.

It was like there was suddenly some hope in my life. I no longer wanted to die, and I was fearful that something could go wrong in the operation.

I went to the hospital with my mum and mate after dinner, and had the operation the next morning. My mate waited for me the whole time – he slept on a chair in the hospital all night.

After the transplant I was very determined. It was like the opposite of how I was feeling before. I had life to live. I knew that the quicker I could get moving, the quicker I could get out of hospital and get on with my life. I was so much more positive than before. And I could eat what I wanted! I walked to MacDonalds from the hospital as soon as I could.

Some setbacks

Being off dialysis was good but I was on a high dose of steroids after my transplant and it made me really angry at nothing. I wasn't safe, it was an awful time – worse than dialysis. I was hungry all the time too – I'd eat a whole spaghetti bolognaise to myself and still want more.

Then I discovered I had diabetes because of the meds. The things I like the most, I wasn't supposed to eat. I just thought 'again, seriously?'. I ended up refusing insulin. Luckily it was only temporary, and the diabetes sorted itself out.

Looking to the future

My transplant was in November 2017 and I've got nothing in my way now. I started at the Royal National College for the Blind in September 2018; I'll be doing sport and recreation and business administration courses. I've always wanted to do sport.

At the same time I'm transitioning from childrens' to adult kidney services. It's gonna be hard getting to know everyone and, for me, finding my way around a new hospital, but I'll be alright. My new kidney is in the back of my mind every day. I've never failed to take my tablets, and I never will.

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