Thursday, February 13, 2014

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:


video

   

Sunday, November 17, 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 :(  ….








Monday, August 19, 2013

Friday, May 31, 2013

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 30th 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



Melbourne 3AW



Wednesday, May 1, 2013

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




Sunday, November 4, 2012

A reflection...


Imagine you just woke up with a cold. It’s not the worst cold 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 cold 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 cause you haven’t slept much because your coughing kept you up over night. You’re not hungry but you know you have to eat because you’re already underweight from the stress on your body. You feel nauseas after you eat and you’re stomach is even more upset than it was before. 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 cold 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 cold and stomach ache now requires IV antibiotics on a regular basis because the oral medications just don’t cut it now. 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. Your dreams seem to be getting further away as your health begins to consume your every movement and every thought.

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. They would make you feel like a new person and you could finally say you felt healthy again. Your dreams start to become a reality and you go back to living a normal, energetic and fun filled life. 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 is what happened to me. This is what happened to me the moment I started on Kalydeco. It’s not until now when I sit and reflect that I actually realize how fast my life was sliding on a downward spiral. 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.

After moving out of home at age 18 to study and pursue a career in photography I found my self-questioning my future at the beginning of 2011. I had dreams of travelling the world and becoming a renowned and respected photographer but after a rapid decline in health these dreams seemed more like a fantasy rather than reality. At age 22 Id worry on a daily basis about whether Id actually get to do all the things Id wanted to do before I died. I’d worry that I wouldn’t get to see all the places I wanted to see because travel was too straining on my health, Id worry that I wouldn’t get to live life to my full potential, I’d worry that I wouldn’t get to raise a family or grow old to see my children grow up. Since starting on Kalydeco it’s like all of these worries have lifted and I feel as though anything is possible. I’m not even really sure how to put into words the gratitude I have for all the people that have helped develop such an amazing phenomenon. 

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.