I was born with a genetic condition called Cystic Fibrosis. My big brother was born three years earlier with CF so when I was born my parents we're neither shocked or inexperienced in caring for another child with the disease. At first it was a surprise. Back then there was no screening to confirm the presence of the CF gene. I was born a chubby and very healthy 9-pound baby. It was only when my mother kissed my head that she could tell I had CF, like my brother. She tasted the salt on my head - one of the symtoms of CF is that the body loses salt. After sport or in this case the very act of being born, a child with CF has salty skin.
Nevertheless I was a healthy child. My brother's birth was more complicated, he was born with a common problem to CF babies - meconium ileus - blockage in the bowel. He was born weighing 7 pounds and had to have an operation immediatly after birth in order to remove the blockage, quite a delicate procedure which left him slightly weakend. He survived which to this day at 27 years of age remains his legacy - he's a survivor.
I am now 24 and have had my fair share of health issues in that time. My childhood was great and my CF was extemely well- managed due to the patience, care and medical knowledge of my mother, radiographer to the stars. Nothing ever surprised her or made her queezy. My brother and I had so much energy and participated in so many different sports from trampolining to baseball, netball and soccer (many of which sports we seemed to have a natural affinity for, all these physical activites are credited for our healthy early lives.
It wasn't until I was 12 years old that CF became more of a burden to me in my everyday activities. By then I'd had my first admission to hospital and my parents were going through a separation. After that I had a hospital admission each year and I had to see the specialist more often, sometimes once a week, so they could keep an eye on me. By the age of 16 I wasn't as active as I once was, I would become breathless during sporting games and it became a struggle to get anything done. It seemed my lung function was below 30% - those kind of figures indicate lung transplant to the experts.
Meanwhile, my brother had had a liver transplant after his liver had failed - a complication of CF, mainly seen in males. He waited 9 months for a liver transplant. He survived but it was a very difficult time for the family.
I made it through school, even though there were many days I either was too sick or was wagging and hanging out with my boyfriend or both. I was so lucky to have such an amazing friend in my boyfriend. We were together for 4 years. We are still very good friends now. I was equally lucky to have an excuse for having loads of sick days... well it's one of the very limited bonus's of CF! With all that going on I got through my final year. Although in that difficult year my lung collapsed (a pneumothorax) and I was told I couldn't play the trumpet or play any netball. Netball was the one thing that I felt was doing me any good, but soon I couldn't even walk up a flight of stairs without being short of breath and almost unable to breath. It was very scary for me, as I knew I was getting closer to going on the transplant list for a new set of lungs. I had been playing the trumpet for 7 years and it was the instrument that I had chosen to play for my music exam for the HSC in my last year, but I wasn't allowed to play otherwise my lungs would surely collapse again. I felt extremely depressed. I didn't want to finish my schooling at all. I wanted to leave it all behind and move to the country side. But by some miricle I made it through and finished school.
After school, I went to university in Albury-Wodonga to study Biological sciences and I was happy because I had always dreamed of living away from the city. It was a great year - I met new friends, a new boyfriend and I felt healthier than I had in years. Things began to change for me - although I was still having regular hospital admissions and my lung function wasn't improving all that much, I still felt better. Sometimes numbers and statistics on medical tests have no bearing on how you actually feel. They don't always correspond.
In order to cut a long story down to medium length I have been brief and will continue to be brief in bringing up to date with the present.
I now work as a website editor and online producer and I have been offered an intership as a radio journalist in Germany. I leave soon. My health still has its ups and downs. I'm always on trial, I'm always pushing it, putting my mettle to the test, sometimes too far, to see what my body can do. Right now, I'm in control and even if I wasn't I have been through a lot and I reckon I have the courage to make it through anything. If I had the choice to be rid of CF, I would chose to keep it, because it's made me who I am. I wouldn't have it any other way. I have CF and you might think that's a pity for me, but I don't know any different, or what life is like without it. Also I am more than open to see what life could be like without CF, and so as the search for a cure continues, I live my life as normally as I can. It's a different life to any of my friends but I still have goals and dreams, and I am more than capable of fulfilling them. It's an extremely exciting ride to be on!
