Vicky

  • Vicky’s story by Vicky-Wilson’s Disease

 

Hi my name is vicky and I’m 19 years post transplant, I was transplanted in st Vincent’s in may 1994, I was 15 years old.

Things started to get bad for me early 94, I was feeling very ill and down, I saw lots of doctors and my parents were told I was heading towards a nervous break down due to exam stress, I was tired all the time and my moods were so low I thought of ending my life, I suffered nose bleeds every day that lasted hours and I kept having terrible leg cramps. In early may I started to notice my eyes turning yellow and I stopped sleeping because I was itching all over and I couldn’t or wouldn’t eat as I felt so sick afterwards and had terrible stomach pains.

My mam took me to our gp and he ordered some tests, he asked for a urine sample too and it had blood in it, I over heard him talking to my mum about me and I got upset, as I started to cry my nose starting bleeding really badly and the doctor couldn’t get it to stop, he sent us straight to casualty.

I don’t remember much just feeling very very sleepy, doctors kept asking me if I took something and wouldn’t believe that I hadn’t. I was kept in and the rest is a bit of a blur, I know I had a haemorrhage during the week I believe it was the Friday, then being moved to high dependency, my mum said I was slipping in and out of consciousness and doctors were draining fluid from my abdomen. I recall being put in an ambulance but most of what I remember is fiction I had started to hallucinate but I do remember thinking I was dying. I was moved to st Vincent’s on Monday may 10th and was in a critical condition they told my family to expect the worst, I was put on the transplant list that day. Family were brought to the hospital to say good bye and a priest was brought in. My little brother and my grandmother were brought to the hospital to see me one last time as they thought but when they got there mam and dad told them theyd had a call they had a liver for me. I was brought to theatre at 1am Tuesday 11th may.

It must have been the worst night of my parents lives.

It took a few months to find out why I got so sick it turns out I had Wilson’s disease a genetic disordered that means your body can’t absorb copper, my doctors said when they removed my liver there was less than a third of it left.

I only found out about my transplant after I woke up so it was a bit of a shock and the bit I found the hardest was knowing someone had died in order for me to live and I really struggled with that.

Being a teenager on a cocktail of medications wasn’t easy, I was teased at school for having a big moon face and facial hair, I had people judge me that’s one that never stops. There’s a stigma attached to liver transplantation, people think only drug users or alcoholics need them but I love educating people like that.

It’s not been plain sailing, I’m still on a cocktail of medications and I got chronic rejection after my first year but I’m still here fighting it 19 years later and most days I feel just as good as anyone else.

Having my transplant has never stopped me living my life, I’m happily married and have a wonderful little boy, I work and I’ve gone away with the girls and had fun in the sun, it’s a scary time when you get out of hospital first but it does get easier.

I’ve always had the attitude that the life I am living is a gift and I owe it to my donor to go out and live it.

WHAT I WOULD SAY TO CHILDREN

I’d say its not going to be easy, you will have really bad days but you will have truly amazing times too, you will get older it will get easier but never use your illness as an excuse to not achieve something. It’s not easy and its not fair going to school when you feel tired or sick and facing nasty comments about your weight or how the steroids make you look but I can tell you from experience these side effects don’t last. Live your lives because we have something very rare from an early age, we have the knowledge of how fragile life is and how important it is to make every day count, we are the lucky ones.

WHAT I WOULD SAY TO PARENTS

To you parents I say please allow your children to live their lives, let them take the same risks and steps you would have before they got sick, I know after all you have been through you just want to protect them as did my parents but instead it just made me feel different to everyone else and at times it got me really really down. All I wanted was to be treated like any other teenager because believe me I acted just like one.

 

 

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