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Kylie's story

Life is there to enjoy and I'm so unbelievably lucky to be here

When I was 14, I was dying. I said no to transplant a million times and even walked out of clinic appointments whenever it was mentioned. I thought that being born with cystic fibrosis meant that dying was my destiny and that was OK with me.

At age 15, I did the work up and I was put on the official waiting list for a double lung transplant. I waited almost four years for a donor. Because I am very small in stature and I have a specific blood type, the wait was grueling. When I was 17, I had a stroke and I believe that this deprivation of my abilities was what gave me the strength I needed to keep on going until I got my second chance.

A year later, I received the phone call (the frantic footsteps up the stairs confirmed it). No matter what happened from that moment on, I had a chance at living. I felt peaceful, though sad that somebody must have lost their child that night...and that's never an easy thought to process.

After it was all over, I could not believe the inhale could be so long and not in gasps! It was the most amazing feeling.

Since my transplant I have done things that I have always wanted to do including becoming a qualified youth worker/counsellor to young people. I volunteer support to young people living with chronic conditions, I help run support groups, I have been part of a rotary club, I have spoken at international and national events and I also sit on an advisory council for the children's hospital.

I have learnt to appreciate the people who love you. I have watched 17 of my very close friends pass away from illness and complications. But they all taught me something that I take with me through this journey and for that I am always grateful.

I think of my donor family literally every single day. I think of their loved one and I'm always imagining they are enjoying things alongside me. I think the word hero gets thrown around so flippantly these days....but donor families are true heroes in every sense of the word. They literally save the lives of people they have never and will most likely never meet. In their darkest hours, when they are at their most vulnerable and in so much pain...they choose to save lives and bring a light to the end of the tunnel for so many people who are suffering. That is something i will never ever forget for as long as I live.

I think that you need to be able to see the beauty that every single day brings to you. And if one day you are having a really hard time seeing it, then make the beauty yourself. Go out and try something new, do something new, see someone you love and be grateful you have them there to make you smile. Life is there to enjoy and I'm so unbelievably lucky to be here to experience it in all its glory!


Nicky Burton