I was diagnosed with Cystic Fibrosis (CF) at 11 months old after experiencing digestive issues and a more-than-normal amount of colds and infections. I had a relatively 'healthy' childhood, with only a few hospitalizations. In August 2014 I was hospitalized with pneumonia, which knocked down my already low lung function from 40% to 24%, and forcing me to give up a work contract. After a week long hospitalization and home IV treatment for 4 weeks, my lung function was stable enough that I could stop the antibiotics. After a relatively stable few months after that, I returned to work, only working part time. In July 2015, I was hospitalized again with pneumonia. This required more IV antibiotics and many follow up appointments. After moving 8 hours away from our home and family, I received my double lung transplant just 3.5 months after being placed on the list. My recovery was fast and incredible. After 14 days I was out of the hospital and walking blocks around the city. After the mandatory 3 months in my transplant city, I was able to go home and really start living my life. I went back to university full time, started a part time job and tried so many new activities! I tried kickboxing, jujitsu, I went hiking and mountain climbing. It was amazing! Around my 18 month assessment my lung function started to decline with no real reason. After more tests and interventions, nothing seemed to improve my lung function. Unforunately, I am now back on oxygen and have a lung function of 21%. I have been reassessed for a 2nd transplant and am currently waiting to relocate, yet again.
"I don't want to think about when I die"
That is the line I hear most when I ask if people are registered, or why they aren't. I was quoted once by saying "organ donation isn't scary until it's you who has to deal with it". I understand why people don't register: they're uncomfortable talking about their death, religious or health reasons, they don't know the impact organ and tissue donation can make or they don't know someone directly affected. By being a registered organ donor, one person can save up to eight people. That's a huge number. For those of you who still aren't sure about organ donation or don't know anyone needing a transplant: now you know me & my story. I'm ready to start chapter 2, where I can fully enjoy everything that I accomplish and breathe easy while doing it, again. I'm ready for someone else's loved one to live on in me.