We’ve always been the type of family to look at our lives as fortunate, as I could truly have it so much worse!
I’m fortunate to be here with healthy lungs.I’ve always been a fighter, it’s in my blood. My grandfather was a boxer and he always said “Gosh Tash, if you were a boy you’d be great in the ring… because you have so much heart and determination.”
Well in fact, I said, “Pa I do love to box and I’m sure it doesn’t matter whether I’m a girl, because look at these amazing athletic women fighting here today! Boxing is great for me because it’s another form of cardio exercise keeping my lungs healthy!”
My parents both carry the CF gene and I received it from both which gave me the disease. So when I was born I never actually put on weight as a baby, all the food Mum was feeding me would go straight through me.
People would accuse Mum and Dad of under feeding me, when in fact I was probably given three times the amount of food of a normal baby. The food would go straight through me, and as nasty as it is to say, it turns into diarrhoea which means I was just leaking out of two nappies, plus in those days the baby nappy towels.
Yeah that’s gross, but that’s the reality.
I’ve always been a fighter, it’s in my blood.
Unfortunately 20 years later if I don’t take medication when I eat, the same thing happens. This is a result of my pancreas not working. My body doesn’t break down and digest food, so I take a substitute medication which comes from a pig’s pancreas. I take this every time I eat which breaks down my food.
So back to being diagnosed with cystic fibrosis. I was diagnosed at six weeks old through a heel prick test. I was then rushed to Camperdown hospital in Sydney where I got more tests, while mum and dad were put though two weeks of intensive learning about cystic fibrosis! Eventually I got to come home and began putting on weight!
That’s how my life started. Now they say our life expectancy is around 40.
This disease affects every organ in our body. In particular the pancreas like I’ve just said and largely our lungs! Every organ in my body is clogged with sticky mucus. Each person with cystic fibrosis can develop infections on their lungs which grows in the mucus. We generally have these bacterial infections for life.
I personally have a bacterial infection called Sutamonis, and I also frequently grow a form of staph infection. When I go for check ups I see around six different specialist. My cystic fibrosis specialist, respiratory specialist and I do lung function tests, dietitian, chest X-rays, blood tests, bowel specialists, physios for lungs, and a sputum test.
So as well as the tablets I take to digest food, I do physiotherapy twice a day including three different medications through a nebuliser as well as a chest clearance breathing. This is great. I’m committed to doing it as its kept me well for this long. My doctors say you can do your physio once a day because I’m so fit and sporty, but I say “nah, I’ll do it twice just because it’s better.”
I’m extremely sports orientated. I’ve had only ever had two hospital admissions in my life. They were both when I was six and I was only home for a couple of weeks after my first admission before I got really sick again and went straight back to Sydney for another two weeks. Now at this point my parents were scared, scared I was going to be hospital bed ridden most of my life, and not have a great quality of life. So I came home from my second stay at hospital and I started playing sport.
Netball, touch football, basketball, athletics, cross country, you name it, I was there, and I have never looked back to that hospital bed! I’ve never been back and 14 years later still no hospital admissions. I’m now 20.
Sport has given me the grounds to stay alive, fit, well and happy. I’ve actually always done extremely well in sports, especially netball and touch football. I’ve represented NSW at an Australian national tournament and we were silver medalist. I’ve been able to play high level netball as well representing at NSW tournaments. No one I’ve ever played against would even know I’ve got a disease which could cause me to not even take the field or court.
Cystic fibrosis has never impacted me on the sporting field and to be honest if it has I’ve just pushed through it because I’d prefer to win then to leave the court. Since I started playing I’ve never been sick. I also work hard at the gym. I have to say it’s my life, literally it keeps me alive! It keeps me off ventilators, and an oxygen unite.
When I was young I hated people knowing I had cystic fibrosis. I wanted to be known as “oooh that’s the kid whose really good at netball and touch”, not the “oh that’s the kid who does well at sport with cystic fibrosis!”.
But now I don’t mind, now that I’m older, I know people respect me for my talent and to top it off, yeah I can do all that with crappy lungs. However cystic fibrosis makes me who I am. Stronger, determined, a fighter, resilient; and I think that’s a good thing.
Cystic fibrosis is part of who I am, I don’t think “poor me”. I believe everyone’s sore toe is their sore toe, but some just have sorer toes. I’m here I’m breathing, I’m walking, I’m running, I’m living, I’m living well, but yeah cystic fibrosis is going to catch up with me one day, but I’ll be okay because I’ve done and will continue to do everything I can to double that life expectancy to 80.
Cystic fibrosis makes me who I am.
Stronger, determined, a fighter, resilient; and I think that’s a good thing.
I’ll keep playing sport because I love it, and I’m crazy about it. And it’s a bonus that it helps keep me well. And maybe one day my life could turn into ventilators, living on oxygen tubes and collapsed lungs resulting in lung transplant.
But hey, I’m gonna have a fair crack at changing the odds.