Thursday, February 13, 2014


I felt extremely anxious in December when the media portrayed the positive PBAC listing for Kalydeco to seem as if 'the battle was won'. I was receiving messages and phone calls from friends and media congratulating me on the victory yet I still felt a sense of great worry and anxiousness. While we are one step closer it certainly is not the end of fight. As Christmas started to creep closer my health began to decline, but with work, social and family commitments I chose to ignore my nagging and persistent cough. I had 8 shoots in 4 weeks, Christmas and a move to Sydney all planned for December and early January. Come late January I was exhausted- mentally and physically. While I know my work load was a lot for a 'normal healthy person' I knew I could have done all this with ease on Kalydeco. 

I was having sleepless nights for weeks, unable to get to sleep from persistent coughing. I'd wake up in the morning after 2 hours sleep feeling as if Id run a marathon over night. I'd continue the morning with my lungs feeling as heavy as concrete and as sticky and thick as glue. By lunch time my coughing had usually subsided and with some exercise I'd feel back to normal. Each afternoon I'd convince myself that I wasn't that bad and it was probably just a bad day. I'd have this conversation with myself daily around 4pm when I felt my best and decided to continue on like nothing was wrong. This is always a red flag! When you have to convince your self that it's 'not that bad' things aren't right. I continued to ignore this red flag until my lungs started bleeding quite badly on sporadic occasions. I'd be laying on the couch and cough once and my entire mouth would be filled with blood and I'd run to the sink. When your staring at the bathroom sink looking at 1/4 a cup of fresh blood that came from the inside of your body you start to wake up to your self and realise things could be better. 

Its at this point I finally call up the hospital and book my self in for a CF 'Tune Up' - Intravenous  antibiotics 4 times a day plus extensive physiotherapy and exercise to try and get rid of the infection that has built up in my lungs. 

The thing is I never 'look' sick nor would I say 'I feel sick'.  I've been sitting here trying to think of a word to describe how I feel physically and the best thing I can think of is 'Frustrated'. I'm frustrated when my lungs won't relax and let me breathe easily, I'm frustrated when I can't get to sleep, frustrated when I'm tired, frustrated when my lungs bleed and frustrated when I have to go to hospital. I don't lay in bed and feel physically ill, I simply do everything I need to do day to day except with an annoying, persistent and nagging cough that won't go away. 

I spent 4 days in the respiratory ward at The Alfred Hospital and 7 days staying with Mikes parents on hospital in the home.  I was put into a double room with a lady who was 57 years old and had Emphysema caused from her smoking addiction. She had 11% lung function and could hardly talk, walk or eat for her entire body was failing because of her lungs. She would often start sobbing to me about her situation and I was sorry but couldn't really find the words to console her. She was the living dead, with little chance of receiving a lung transplant the only way to go was down. The doctors would mill in and out of our room recommending that she should be sent home however she refused to be discharged for the fear of dying alone at home was terrifying. So there she was dying next to me- unable to stay but unable to go. In the night when she was struggling to breathe I'd feel overwhelmed with sadness but also feel extremely thankful and hopeful that my future would not look like hers. 

After 4 days in hospital I was well and truly ready to escape! Mikes (my partner) mum kindly let me stay with her and the family while I finished off the rest of my IV antibiotics and treatments for the next 7 days. I was so incredibly grateful to have their support and be in comfort of a home again! 

I'm now back in Sydney with my lovely partner Mike and looking forward to 2014 finally! After a rocky start I hope this year is as good as the last.

Looking back on 2013:


1 comment:

  1. Dear Alex,

    My name is Maya and I would like to introduce you to the company I work for - Handle My Health. We have created MIAMI - an award-winning patient centred platform, accessible through mobile devices and the web which allows users to manage their medicines, nutrition, physiotherapy and exercise, and keep in touch with others with the same health condition.

    We are currently embarking on a project to service the UK CF population and we are looking to mirror this project overseas. As a CF patient yourself and someone who is deeply involved with the CF community through your blog, we would appreciate your insight on how to best meet the needs of the Australian CF community. CF patients come with inspiring stories and we would like their voice to be heard globally.

    I would love the opportunity to speak with you and introduce you to Handle My Health and what we are planning to achieve.

    Thank you in advance - your help is much appreciated.

    Looking forward to hearing back from you.

    Kind Regards,