Never Stop Fighting!

It's been 30 months since I started my blog. That's almost 1000 days and Kalydeco still isn't subsidized in Australia. That's pretty scary. 

As I've mentioned many times on my blog I've had many up's and downs throughout this campaign. Sometimes I feel strong and other times I feel overwhelmed and exhausted, mainly emotionally but also physically at times. Recently I took a quite step back from media and social media platforms. It all became a bit much to be honest. I took the time to focus on myself again, firstly to get my health back on track and also to realise that I could still be me without being defined by 'Kalydeco' and CF. 

During this time I started to think beyond my own situation. I realised that I had been living in a bit of a 'Kalydeco bubble' and I needed to take the blinkers off. I started thinking about the rest of the CF community and even about other rare disease sufferers in Australia. I started to wonder what other parents and sufferers will do in the future when even more life changing medications are developed. I felt anxious and concerned that they will also have to go through this lengthy and exhausting process. Quickly I started to become acutely aware of many other parents trying desperately to access life changing medication for their children. Upon learning this I came to the conclusion that our country ('the lucky country') is behind the 8 ball…way behind the 8 ball and something needs to change. 

The health system that we currently have is renowned as 'one of the best in the world' yet thousands of rare disease sufferers are unable to access life changing medication due to a system that simply does not prioritise the most vulnerable people in the country. Science, technology and medicine changes, evolves and most importantly improves every year and I believe it is extremely important that our health system also changes and evolves to ensure it is reverent, up to date and best accommodating the majority and minority groups within the population. We are constantly being told to respect and understand the 'processes and procedures' of the system however I think it's time to actually question the 'systems' effectiveness. Personally, I believe our system is OUT OF DATE. I think politicians and other influential individuals associated with PBAC drug listings need to have a long hard think about whether the 'system' is actually serving the people that need it most. It is widely known that specialised medications are astronomically expensive and this problem is only going to get worse. I certainly understand that there must be a system and that everything comes at a price but I believe we need to work together to come up with a better solution, a better system for a better outcome. I don't pretend to have the answers to FIX this current situation/problem however I do believe we have the power to create awareness and consequently generate some form of change. 

And so…after a brief passing moment of quietness I have decided to continue campaigning harder than ever before, but this time on behalf of ALL rare diseases. 

I have teamed up with Rare Voices Australia to produce a photographic project called, 'The Forgotten Ones'. This project focuses on capturing young Australian's that live with a sibling that suffers from a rare disease. 'The Forgotten Ones' project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering. Rare Voices Australia have connected me with 12 different families within Australia fighting against 12 different rare diseases and I have commenced portrait sessions for the exhibition. 

Our main objectives are to: 

1. Generate greater awareness for rare diseases in Australia

2. Strengthen the common voice of people living with rare diseases 

3. Address rare diseases as a national challenge 

4. Promote rare diseases as a national public health priority 

5. Demonstrate that rare diseases communities extent beyond that of the rare disease patient (i.e siblings and families are also impacted) 


We will be holding the exhibition at Customs House, Sydney on 12th-14th March 2015 with an opening night on the Thursday 12th. 

We aim to target Australian politicians, influential individuals and media as well as the wider community to attend the event. 

I also recently got a phone call from a young guy called Alex Strachan and I could tell straight away he had that burning fire determination that I once had at the beginning of this campaign. He explained to me that he had someone close to him living with CF and whilst that person was not eligible for Kalydeco (due to genotype) he wanted to do something to really make a difference. 

Alex decided that he was going to ride a jet ski from Cronulla to Port Macquarie
to raise awareness for CF and to also raise money to fund an advertising campaign to help get Kalydeco subsidised. I have been so inspired by Alex's determination to make a difference and it has really helped me realise that we are all in this together. 

Head down to Cronulla Beach tomorrow 7am-8.30am to support Alex Strachan embark on his heroic journey!

www.rideforkalydeco.com.au

Back on K!

I dont blog all that often… mainly because I don't have a lot of time but also because sometimes I feel like I sound like a broken record…repeating the same information, worry and frustration over and over again.

This time I've got some new news, some exciting news and something worth sharing. I'm back on Kalydeco!

At the beginning of this year I elected to participate in a clinic trial that my hospital was running. This trial went for 4 months to investigate the possible impact of Kalydeco on 'exercise tolerance'. During the 4 months I attended hospital appointments every 28 days to  repeatetively complete a range of different tests such as; sweat test, full set of bloods, questionaries, comprehension test, pregnancy test, sputum culture samples, lung function test, ECG test and 10-15 minute exercise tolerance test on a gym bike. For the first 28 days everyone was on 'wash out' meaning everyone was just continuing on normal treatment without Kalydeco, the second visit we were given 28 days supply of either placebo or Kalydeco, third visit was 'wash out' again and fourth visit we were given the opposite 'drug' to the first supply (EG. if you had placebo the first time you would get Kalydeco the second time and vis versa). This was a double blind trial meaning that both patient and doctor were not allowed to be informed on which 'drug' they were given.

I knew 100% exactly when I was given Kalydeco and placebo because of my past experiences on K. My Kalydeco supply ran out in October last year and my health had began to gradually fall back into its old ways. I was having increased difficulty sleeping due to coughing, I felt congested and I just felt tired and lethargic. The trial started in February and my health continued the same while on 'wash out', as predicted because nothing had changed in my health care. 28 days rolled around quickly and it was time to go in for the March trial appointment. I went through the same tests as the first time but this time I walked out with 56 blue pills…I was undecided whether they were the real deal or just a bunch of sugar pills disguised as magic!? I was sceptical and decided to remain undecided unless I had reasons to think otherwise. March turned out to be a fabulous month… I knew within the week I was back on special K!! Ohhh what a relief, I really needed this boost! Within a week I could finally go to sleep laying down again as my reflux symptoms had gone, I felt energetic and I could finally clear all the mucus in my lungs easily. It was the fastest 28 days I had ever lived in my 25 years of life. I felt sad to see the pills disappear as the days went on because I knew I was then in for 3 more months without it.

It was April and it was now 'wash out' again. I felt good and I knew the end of the trial was in sight and I would be back on Kalydeco in no time. I flew back to Sydney to resume normal life and work again. About 2 weeks into April I caught a shocking cold- blocked nose, head ache and congested. It was a massive punch in the face. I soldiered on and knew it would pass however the cold turned into a cough that sounded like a 90 year old man who had been smoking his entire life. I just couldn't shake it and I started coughing up about 1 -2 cups a day of thick green mucus. I was extremely congested and had great difficultly breathing. I started to get only 3-4 hours sleep at night because of my coughing and Mike and I started taking turns of sleeping on the couch. I'd spend hours and hours tirelessly coughing until I finally got to sleep and then when morning came I would start the whole routine again until round midday when my lungs would finally settle. I'd sometimes cry in the shower because I felt so exhausted and frustrated that I couldn't clear the thick mucus from my lungs.

I flew back to Melbourne for the May appointment and I wasn't in a good way. I was in two minds about whether or not I should go in for a tune up. I was hesitant because I knew the trial would end soon and I would be back on Kalydeco. I decided not to have a tune up and continue on oral antibiotics to try and get rid of the lung infection. This was a bad idea. I went from bad to worse. Probably on par with the worst I've ever felt actually. I knew I was on placebo this time as my health did not improve in anyway. I felt so tight in the lungs, so congested and all round horrible. My sleep became even more reduced to a maximum of 2 hours a night and I'd operate like a walking zombie in the daytime. I'd say there would only have been about 15% of the day that I wasn't coughing, the rest of the time I was coughing violently until I vomited or turned red in the face. It's pretty hard to operate your life when this happens every single day…never letting you have a break, ever. My lung function dropped to 62% the worst its ever been, I lost 4.5kg and I had huge bags under the eyes. I couldn't do my work and some days I'd just sit in my office chair at my desk staring at the screen unable to work but unable to sleep. It was 7 days till my 25th birthday and 8 days till the end of the trial and I'd be back on Kalydeco! I had my eyes set on that date and getting Special K was going to be the best birthday present ever!! 3 days before my birthday I received an email from the clinical trial doctor explaining to me that there was a 'hold up with the supply of K and that I would most likely not be able to receive my supply at the next appointment'. This was devastating for me…I'd had my heart set on the 28th of May since the start of the year and now all of a sudden my future was so unsure again. Not only did I feel really unwell I also felt depressed knowing that I had to continue on feeling this way for an undefined amount of time…an all too familiar feeling for the CF community at the moment.

I flew back to Sydney empty handed. I think psychologically I was really struggling. I let myself slip into the downward spiral I used to know over the next week. Barely able to function I just sort of just existed for the next couple of days unsure about what to do with myself. I was so desperate for some sleep and relief from my lungs. I started searching the house for a packet of Kalydeco that I thought I had left over from last year. I knew I had 6 or 7 left over tablets from a time I had to reduce my dose due to hemoptysis (coughing up blood). I started turning the house upside down, looking in every possible bag, cupboard and draw in the house. I felt like a junkie, blind sighted and focus on finding the next hit. I couldn't find the packet…I concluded that i must of packed it in the bags I took back to mum and dads when I moved to Sydney. I knew deep down that not even Kalydeco could fix this predicament I'd gotten myself into. Kalydeco is brilliant but it's not designed to get rid of lung infections it just helps prevent them. I decided to book myself into hospital for 2 weeks of IV antibiotics. I travelled back to Melbourne and stayed with my partners parents place again to complete my tune up. Luckily during my tune up the supply of Kalydeco arrived at the hospital and I was given my ongoing monthly supply. The IV antibiotics quickly helped with my lung infection and Kalydeco began working its magic again!

I've now been back on K for 3.5 weeks and I'm a new person again. I've been sleeping easily, again all my reflux symptoms have gone, I've put on the 4.5 kg's I lost, I no longer have coughing fits to move the mucus and I have 110% more energy! I am still coughing up thick mucus as I think my lung infection is hanging around a bit but it much easier to move thanks to Kalydeco. I am extremely grateful to have had the opportunity to participate in the clinical trial to allow me to gain on going access to K and I so thankful to have my health finally heading in the right direction again.

Over the past couple of months I have felt extremely overwhelmed by the Kalydeco campaign, especially when I was feeling so unwell. I do feel a great sense of responsibility to speak on behalf of so many people in desperate need for this miracle medication but sometimes I have to take a step back and focus on maintaing my own health. Now that my health is getting back on track I feel stronger physically and mentally and I will continue to fight for those that so desperately need access to Kalydeco.

Portrait of me by Kim Mennen.

Kim is a great friend of mine from university and she assists me on commercial shoots when I'm back in Melbourne for work. I was booked on a shoot in Melbourne at the same time I went into hospital to have a 'Tune Up'. My work means everything to me and I am determined not let CF stand in the way of my passion. Kim and I had a giggled on set as I shot one handed whilst being hooked up to my IV pole! It was a bizarre sight thats for sure! Kim decided to document it. 

PBAC and Vertex Negotiations

Today the PBAC and Vertex both released statements following the MARCH PBAC meeting. 

PBAC statement-

https://www.facebook.com/Yestokalydeco/posts/1483280365235889

Vertex statement:

http://www.vrtx.com/assets/pdfs/AustraliaAprPBACupdate.pdf

I have just been called by the media to give my opinion on the two statements released by both PBAC and Vertex this is what I said. (I hope that I have said the right thing- please note I am also still processing the whole situation!)

From my understanding both PBAC and Vertex are still at a point of negotiation which basically means our situation has merely stayed the same. We are very glad that PBAC and Vertex are actively negotiating however we as a community are still very anxious about the amount of time these negations take!

I understand to a certain extent why the PBAC have placed restrictions on the access to Kalydeco. These restrictions and access criteria sound very similar to the processes and steps taken to gain access to Pulmozyme. I understand that the govt. need to be able to monitor and make sure that the extensive amount of money they are spending on patients is being used properly. You must remember there is a compliance issue that both Govt. and Vertex need to consider. While the majority of Cystic Fibrosis patients are very diligent and compliant patients who ALWAYS look after them selves properly and always take medication regularly, some patients do not do this all the time and therefore would not be 100% benefitting from the medication. This is unfortunate however a reality.

I also said that I was a little confused as to why Vertex released a statement stating that they are very concerned that the most sickest CF patients would not get access to Kalydeco under the restrictions the PBAC have listed. I said I was confused because nowhere in PBAC statement does it mention restrictions based on FEV1 lung function below 40%? It merely states that there must be an increase in lung function after a 3 month period of time. It is very concerning when the two statements are conflicting and don't support the same information? It makes me feel like we perhaps are not being told everything?

I went on to say that if the restrictions the PBAC have listed do NOT exclude 'the sickest patients' (FEV below 40%- these people NEED it the most!!!) from accessing Kalydeco than I understand why the eligibility criteria is in place. I have 100% faith that each and every G551D patient that takes Kalydeco WILL see at least a 10% increase in lung function over 3 months and therefore it is not a RESTRICTION it is simply a HOOP WE JUMP through to get it. If thats the only hoop they are going to make us jump through than I think thats reasonable. However if Vertex's statement about 'sickest patients' unable to access it under these restrictions is true then NO i do not think that is reasonable. I think that is outrageous and unacceptable. Hmmm but I am not sure what statement is true???

So I concluded by saying HURRY UP!! I understand there needs to be negotiations but bloody HURRRRRY UP!!!!! Its already May and we have hardly moved since NOVEMBER…. Both the Govt. and Vertex both equally need to come to the party! Vertex needs to be more reasonable as well!

Alex  xoxo

Update

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:

   

Back to square one...

Three weeks ago when I ran out of my supply of Kalydeco my life took yet another turn. I'm starting to realise that it was a 'wrong turn'.

I had forgotten how restless the sleepiness nights were, the constant state of exhaustion, the breathlessness to walk up a flight of stairs and a feeling as if someone had poured concrete into your lungs and it was beginning to set. I had simply forgotten the everyday battle that Cystic Fibrosis relentlessly forces upon you day after day after day. After previously experiencing all of these things for a gradual 22 years its actually amazing how the human brain can forget and block out such profound and long lasting physical and emotional feelings. It's not as if I can't cope but what is so unique about my experience this time is that I know what it feels like to not suffer, I know what normal life feels like, I know what my solution is, trouble is….I just can't access it anymore.

So here I am, back in the same position I was in 18 months ago with no Kalydeco and a shitty pair of lungs. My lung function has dropped from 80% to 66% and boy can I feel it. My severe reflux symptoms are back and I am forced to sit up right to even attempt sleeping. Running and exercise is a real struggle followed by huge coughing fits ( I'm sure my Zumba instructor is starting to wonder if I've caught The Plague or something!!)

I feel extremely frustrated that this issue is still pending with what feels like no progress towards an agreement between the Australian Government and the pharmaceutical company. Its extremely frustrating to live in a country that promotes it's self to be so incredibly affluent and advanced yet be one of the only developed countries in the world that doesn't have access to a life saving drug. I can write blog post after blog post, speak to journalists, TV presenters and radio hosts about all the adverse affects that I have experienced being OFF Kalydeco but in the end it all comes down to politics and business. What infuriates me the most is that the government and tax payers are already spending significant amounts of money on people like me everyday. I along with other patients eligible for life saving drugs are continuing to be a burden on the current health system. We take up hospital beds, resources, nursing staff, doctors, equipment, medication not to mention we are not working. I want to work, I want to be a contributing member of the economy and society. I want to pay taxes so we can live in a country that has a sustainable health system to help people in need. I am being denied of a healthy and successful future because two groups of people can't come to an agreement. Day after day I am told "it is a matter of process…" , but how does this help me? It doesn't. Because everyday they can't make a decision is another day of struggle. Its another day I and many others suffer when we shouldn't have to.

Alex


This still comes up on my phone :(  ….

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CLICK AND SUPPORT 

https://www.thunderclap.it/en/projects/3625-yes-to-kalydeco

CT Scan of my lungs- Before and After

This is the most visual representation I have of the transformation of my health due to Kalydeco. Please don't make me go back to this! :(

Shepparton News Article

Kalydeco Story on Channel 10- The Project

WOW, What a week!

I certainly didn’t think 12 months ago almost to this day when I started taking Kalydeco that I would have the opportunity to tell the Prime Minister of Australia how this drug has changed my life.

On Thursday 30^th May my Grandfather Ken and I along with Cystic Fibrosis Australia were very privileged to meet and talk with Australian Prime Minister Julia Gillard and Health Minister Tanya Plibersek to explain the impact that Cystic Fibrosis has on 3000 adults and children in Australia and to advocate for the subsidization of the life saving drug, Kalydeco.

I also presented a 5-minute speech to around 30 members of parliament at the Cystic Fibrosis Morning Tea held at Parliament House, Canberra.

This is my speech:

Imagine you just woke up with the flu. It’s not the worst flu you’ve ever had but it’s enough to knock the edge off you. You feel congested, tight in the lungs, your nose is blocked and you feel really lethargic. Imagine you’ve also got a stomachache, you feel bloated, irritated and uncomfortable. You lay in bed feeling sorry for your self, hoping that it will pass in a few days and you can go back to doing all the things you want to do. Now imagine someone told you that your virus and stomachache were permanent, that it was never going way. Imagine that they told you that it actually was just the beginning and it would most likely only get worse. Imagine this is now your ‘normal’ state of being from here on in.

It’s not unbearable and you’re not in a huge amount of pain but you’re now burden by your body no matter what you do everyday. You wake up every morning struggling to breathe because you have so much mucus in your body and your tired because you haven’t slept as your coughing kept you up overnight. You’re not hungry but you know you have to eat because you’re already underweight from the stress on your body. You force your self to exercise in hope that it might just move the mucus from your lungs and make you feel better.

Slowly your flu and stomachache gets a little worse each month. You realize that you can’t keep up with your friend’s busy social schedule and work is becoming overwhelming. Imagine your flu and stomachache now requires IV antibiotics on a regular basis because the oral medications aren’t strong enough to fight your infections. You’re falling behind at work because your constantly disrupted by the hospital admissions and you begin to loose touch with some friends who can’t cope with your ill health.

Imagine one day someone told you they could give you 2 little blue pills a day and all your suffering would almost instantly stop. Imagine they told you that you could go back to waking up in the morning with energy, that you could stop vomiting from coughing and you could simply breathe easily. The pills would relieve you from your stomachache and your lungs would no longer feel congested. The medication would make you feel like a new person and you could finally say you felt healthy again. Your family and friends could stop worrying about your declining health and you could finally start living life the way you were meant to.

This was my life.

I was born with Cystic Fibrosis, Australia’s most common recessive life threatening genetic disease that affects a number of organs especially the lungs and digestive system. While there are currently around 3000 adults and children living with this disease in Australia, I have a very rare gene called, G551D that affects around 4% of CF suffers worldwide. This rare gene allows me to be eligible for a life saving drug called Kalydeco. At the beginning of 2012 my family and I became aware that I was eligible for this drug however it was not available in Australia. My health had begun to rapidly decline and news of this drug bought a newfound hope for my family and I. Due to the fact this drug was not available in Australia my grandfather generously decided to buy 3 months of the drug at a cost of $65,000. Almost 12 months to this day and almost $300,000 later I have been extremely fortunate to be given the gift of health due to this life changing drug and the generosity of my grandfather.

I can honestly say without a single hesitation that this drug has changed my life. I’m not angry or resentful I was born with Cystic Fibrosis because without it I wouldn’t be the person I am today. I’ve always had big plans and big dreams and I have always been determined to never let Cystic Fibrosis stand in the way of anything I set out to do in life. Whilst I was determined and I never lost sight of my dreams the reality was that Cystic Fibrosis was pushing them further and further away. At age 22 I’d worry on a daily basis about whether I’d actually get to do all the things I wanted to do before I died. Id worry that I wouldn’t get to live life to my full potential. Since starting on Kalydeco these worries have lifted and I feel like I’ve been given a second chance at life. I now run my own commercial photography business and travel all around Australia photographing advertising campaigns. I have also completed my degree in both Arts and Education and lecture photography two times a week at The Australian Academy of Design. Kalydeco is more than just a drug that allows me to ‘breathe easily’, it gives me the opportunity to live my life to it’s full potential, it gives me back my happiness and it gives me back my future.

I would just like to say a massive thank you to Cystic Fibrosis Australia, particularly CEO of CFA David Jack,to my family and friends and the Australian media, particularly journalist Sue Dunlevy at News Limited for the enormous amount of support.

Page 8, The Daily Telegraph, Sydney, 30th May 2013

Page 3, The Herald Sun, Melbourne, 30th May 2013

Front Page, The Courier Mail, Brisbane, 30th May 2013

                          

 Pg. 14 The Advertiser, Adelaide, 30th May 2013

The Shepparton News, 31st May 2013

The Herald Sun, Friday 31st May

David Jack (CEO of Cystic Fibrosis Australia), Ken (grandfather) and me, meeting with with Australian Prime Minister Julia Gillard and Minister of Health Tanya Plibersek at Parliament House, Canberra.  

RADIO INTERVIEWS:

Click the links below to listen-

Perth 6PR

http://www.6pr.com.au/blogs/6pr-perth-blog/fight-to-subsidise-kalydeco/20130531-2nh4v.html

Melbourne 3AW

http://www.3aw.com.au/blogs/3aw-breakfast-blog/drug-to-help-cystic-fibrosis-300000-a-year/20130530-2ndk4.html

6 Month Update

Okay it's been AGES since I last blogged and I sincerely apologize! I know there is a certain glorification of the term 'busy' in today's society however I consider my lifestyle nothing less than hectic! I have been lecturing photography two days a week at The Australian Academy of Design and have been traveling to Sydney most Wednesdays-Fridays to shoot national advertising campaigns. I spend my weekends preparing lectures and marking assignments and the cycle starts again week after week! Don't get me wrong I'm not complaining, I am so grateful to be able to live my life and I know none of this is possible without the amazing help of Kalydeco! 

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!!

XOXOXOXOXOOX