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Hannah’s story

We are very grateful to 14 year old Hannah for sharing her brilliant and moving account of being diagnosed with liver disease….

I was sitting in the back seat of my Dad’s car coming home from an 11-day stay at the hospital, feeling like l was floating in mid-air. l couldn’t believe what had happened to me in the last 11 days, l had endured multiple tests, scans and even a biopsy. l felt like l had been watching one of the really sad videos you see on TV when it’s Pudsey night.

I guess it all started back in February 2018. l had been off school for about three days, I had been feeling horribly sick. I have a younger sister Katie who was at school when I was off so when my gran, who was looking after me, said she was going to get Katie I asked if I could come too. Katie had been worried about me because we are very close, I wanted to show her I was fine, sadly my plan didn’t work because, when Katie and my gran got into the car, my gran realised my eyes were yellow.

So when we got home my gran phoned my Mum and then my Mum phoned my Doctor who told her to take me to hospital. My Mum then phoned my Dad and they both came home early to take me into hospital. I don’t remember much about the journey but I do remember driving along the motorway thinking “ls this some sort of sick joke? I feel fine, why do I need to go to hospital?” but in hindsight I’m glad we went because if we hadn’t I could have died. If we had just let it carry on or it would have been worse and harder to treat.

I stayed in hospital for 11 days and had a lot of tests and scans, I wasn’t particularly scared of the tests or scans. The bloods tests hurt, I was always worried about the outcome of the scans or I would move too much or miss an instruction during them, but I got used to it. The one thing that scared me was the biopsy, what if I woke up half way through and saw them doing it. What if something went wrong? What if I had cancer? What if? What if? What if? The day of the biopsy I had to fast. Tthat means I wasn’t allowed to eat, it was torture. The night before the biopsy I had a moment of acceptance, there was nothing I could do, whatever happened was going to happen.

After the biopsy, my stay in hospital was a blur of tests and scans, I don’t remember much but I do remember that it was Valentine’s Day when I was in hospital and l received a teddy and a balloon, I’m pretty sure it was my parents but they wouldn’t admit anything, I felt like a little kid with everyone saying “Aw, was that your boyfriend? How lucky are you!?” and me saying “no, I don’t have a boyfriend I don’t know who got me it.” and probably going red, it was weird, everyone was saying I was brave but I felt like I was a ghost or I was reading a book. Basically l felt like I was dreaming.

The worst part of the whole experience was having to say goodbye to Katie, I felt cruel because I needed my Mum to help me with stuff because I had a cannula in my arm and that meant Katie didn’t get to cuddle up with my Mum in bed at night like she always does.

On Valentine’s Day my Mum and Dad had a fancy dinner at one of the cafes in the hospital and my sister and I went to the medi cinema together and watched “The Cavemen” I got really tired and ended up resting my head on Katie’s shoulder, she got worried and asked if I wanted her to go get a nurse, I told her I was fine just a bit tired but I felt really bad. She was the little sister I was meant to be looking after her not the other way round. After that I tried to sit up more so that I didn’t scare her again, it was really tiring so I slept on the way back to my room and a nurse pushed me in a wheel chair, Katie walked alongside.

When we were told I could go home I was so excited but kind of scared. What if something went wrong? When we told Katie she said “Excuse me for a minute, please,” and went out into the corridor and jumped up and down saying “Yes, yes, yes.” It was adorable and made me feel like my heart was going to burst.

I’m back at school now and I have started S3, I’m actually about to start S4, when I got back I told my friends and they decided to protect me, there was actually one time someone accidently bumped into me in the corridor and one of my friend yelled at them it actually scared me so the person must have been petrified. It took a while for me to get back to school, I was off for a month and went home from school early a few times at the start, but I’m so glad I’m back. Not everyone can say they like school and mean it, but when you spend so long away from it, it feels great and I can say I like coming here because it reminds me how far I have come, I am not a sick girl, I am a girl that has a condition called auto-immune hepatitis, it doesn’t define me, it never will, all I have to do is take my medicines every day and be careful doing sports and stay away from touch sports.

If I could go back and do something different, I would try to be more positive when I was diagnosed and less scared of the biopsy.

If you are a young person like Hannah, remember that we are here for you and can support you in many ways. Contact our Young Person’s Digital & Engagement Officer on 012 212 6007.

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