Decided to update my blog after 6 months of neglect!
Since I last blogged I have been skiing, 4wdriving, finished uni placements and exams, visited Kangaroo Island, went to the Australian Open tennis & have been quite involved with the Kalydeco campaign in Australia. I was also interviewed by a TV program about the current delay regarding Kalydeco availability in Australia: 730 Report Story
Last September I also had my first IVs on Kalydeco. We decided that after 1 year of Kalydeco, given that I used to have IVs every 3-4 months, that it made sense to use IVs to get my lungs in the best shape possible. I had also dropped very slightly to 66% after visiting South America.
After two weeks I was at 69% and my cough had decreased significantly (less sputum, lighter green, thinner). I didn’t feel that different, but my varying energy levels are more related to CF diabetes.
In September I also started taking insulin (fast acting with meals high in carbohydrate), however I have had numerous issues with what may be an allergy to the insulin. It has been quite painful to inject, we are still working on this, and potentially may try tablets (although generally tablets are not the preferred CF treatment option). When I have injected insulin it has worked well; my energy levels improve significantly and I feel less tired after eating.
I have also had ongoing issues with reflux and possibly gastritis recently. Always fun waking up at 4am with a stabbing pain in your stomach!
So overall the lungs are going amazingy well, still stable after almost 1.5 years of Kalydeco. I find it hard to believe (as it is just so different to before) how little my lung function varies, mostly staying betwen 69-70. I have never been this stable, especially with no physiotherapy and minimal medications. However, I am having reasonable issues with the diabetes in particular, but it is not surprising given that I am 28. Hopefully this will improve soon.
Photos from my ski trip last September at Perisher:
Keith and I on the chairlift