So in terms of my health there isn't a whole lot to report but ill go through the small changes that have happened over the last 6 months.
For years and years my lungs have always grown aspergillosis (fungal bacteria) and my doctor decided we should have a good go at tackling it. I was put on posaconazole. It is predicted that Kalydeco doses are significantly increased when taking this drug so my K doses were altered accordingly. I was told to take only 2 Kalydeco per WEEK while taking posaconazole daily. It should be noted that there isn't a whole lot of information for prescribing physicians on how to alter K doses with interacting drugs so my dose was recommend from the pharmaceutical documents provided to doctors from Vertex. Within 2 days I started sweating salt when exercising like the old CF days. Quickly my reflux symptoms began reoccurring and I was feeling quiet lethargic and congested. After a series of discussions, my doctors and I decided that the recommended altered dose was probably not suitable/accurate for me and we decided to go off posaconazole and go back to the normal K dose.
Since those minor changes I have been quiet well. In saying this I still really struggle with the whole life/work/health balance. I like to do things at a million miles an hour and I still haven't really learnt when to say No! With my career taking off over the past 12 months my health does tend to be put on the back burner. In the world of advertising photography the world never sleeps and it certainly doesn't stop for anyone. As a young person running my own business I am still figuring out how to actually run my life. It is a constant juggling act; looking after my health, running my photography business, traveling to a from Sydney weekly, teaching 2 days a week, spending time with my amazing partner, friends and family and then just the usual everyday maintenance of cooking, cleaning and running around doing chores!! The reality is 'something's gotta give', and that's usually my health. Without Kalydeco there is no way I could possibly do all the things I do, however last month I decided that I could be better than I was. My lung function had gradually dropped from 80% to around 73% and this was basically due to my ridiculously busy lifestyle. If I was to continue going at the pace I'd been going I decided I need to be back in the 80's! For the past 15 days I've been doing hospital in the home 'tune up'. I've been focusing on trying to make my health a priority and generating some kind of routine where my health is included in my daily 'to do list'! I've been on IV antibiotics twice daily, exercising daily, AD physio daily as well ensuring I am eating a proper healthy breakfast, lunch and dinner. Today I had my review and I'm the heaviest I've ever been at 57kg (which is so exciting!!!!!!!!!) and 84% LUNG FUNCTION!!!!!!!!! So its fair to say I'm back on track.
For those that don't know what AD or ACBT (Active Cycle Breathing Techniques) it is a physiotherapy technique that doesn't require any equipment. After years of being nagged by physiotherapists to do my pep mask and feeling dissatisfied with the therapy, a physiotherapist finally decided that maybe 'pep' wasn't for me! She taught me the AD technique and I haven't looked back. It is a series of steps where you take one really big breath out and slowly take really small breaths in progressively getting bigger, ending in productive huffing and coughing. I feel the most important aspect of this technique is body awareness- you become more aware and sensitive to the crackles, wheezes and overall feeling of your lungs and therefore can apply the therapy when absolutely necessary.
Going forward we eagerly await the approval from the TGA for Kalydeco in Australia closely followed by the decision from PBAC in regards to government funding. In March I travelled to Canberra Parliament House with Cystic Fibrosis Australia in conjunction with Rare Voices organisation to assist in the advocation of rare diseases funding and to build an awareness for Kalydeco within the wider community. I had the opportunity to communicate the positive life changing impact Kalydeco has had on my wellbeing and lifestyle as well as the significant negative financial stress and burden the individual cost of the drug is having on my family.
I spoke with many politicians and I hope that I made a memorable and lasting impact on the people I spoke with. I look forward to continuing this advocation over the coming months to raise awareness for both Kalydeco and C.F in general. In the meanwhile I hope to stay as well as possible, prioritising my health regime amongst my many other priorities.
Here is a picture of me with MP Dan Tehan and CEO CF Australia, David Jack at Parliament House.
Here is a picture of Mum and I graduating from our Grad Dip in Middle Years Education at La Trobe University in April.
Here is me standing in front of one of the images I took for the Panadol Rapid photographic campaign on Young and Jackson, Flinders Street in Feb.
Here is some more of my recent work for Country Road! :-)
All this in just 6 months!!! ALL THANKS TO KALYDECO- I couldn't have done it without you!!