The Insidious Nature of CF

Something that has really struck me lately is the insidious nature of cf. I will be sitting at home, feeling fine, breathing ok and I will think to myself "Perhaps I don't really need a transplant, living like this is not so bad, maybe I was too hasty going on the list." Then approximately 2.3 seconds later I will have a massive coughing fit, vomit my last meal up and desperately grab for my oxygen, taking 10 minutes to breathe properley again. That's when I remember, "Oh yeah, this is why I'm on the transplant list." This disease affects every single part of your life, everything has to be altered in some way to accommodate this illness and not always in the obvious ways. Brad and I were talking last night about going on a day trip to Hervey Bay to see some friends. Ok so I'd have to take my portable oxygen cylinder and my tablets with me, done, right? Well not really, Hervey Bay is a 3 1/2 hour drive from Brisbane so as I'm expected to be at the hospital within 30 minutes of getting a call about lungs, I'd have to let the transplant co-ordinator know where I'll be. One oxygen cylinder won't be enough so I'll have to take two so that means I won't have enough for the rest of the fortnight so I'll have to order more. A big trip like that will really exhaust me so I'll sleep in the car and I get reflux if I don't sleep sitting up so I'll have to bring a pillow, it just never ends. Look, I know these aren't earth shatteringly huge things to cope with, but what I'm saying is to apply that bit of extra consideration and annoyance to every single aspect of a life. Its downright exhausting.

Far from being an isolating illness, cf also affects your family. I remember last year when my cf doctor told me that if I keep declining at the same rate I had been, I would only have 2 years left to live and I agreed to the referral to the transplant clinic; I decided to tell my immediate family when we were all together to save repeating it all over and over again. So we have a family tradition of taking a night time drive to the beach, buying fish & chips and eating them at a picnic table while enjoying the view and the breeze. Boy, do I know how to kill a buzz! We had all been happy and chatty then I gave them my news and instantly my dad started to cry and my sister started sobbing. Crikey, I had never thought that my sister thought much of me but she was sobbing like she was heart broken. My incredible mummy, whom has been to hell and back in her own life, sat there and started asking questions about what I needed them to do, when will the testing start etc. It was my little sister that really got to me; there is 11 years between us, she is only 25, and I had honestly thought that she wasn't a huge fan of mine, just a duty-bound "I love you" sister, but it turns out that she really loves me and was terrified at the thought of losing me. Wow.

So cf affects you, your family, your work, your friends, every part of your life, it sinks its insidious talons into. And it does this. Every. Single. Day.

love
K