I believe my success with Orkambi hasn’t just been about the changes it has brought to my physical self but equally about wholeheartedly embracing them and falling in love with the life I have the opportunity to create because of it. About redefining myself as a person and seeing beyond the patient once again.
To date I have been on Orkambi for 972 days and taken 8063 little pink pills (the study had the pills separated into more pills than the packaging that has gone to market). I believe in the change those pills have made to my life so strongly that I have never missed a single dose.
This experience hasn’t been easy, believe it or not this is the condensed version. There are a lot of pieces in between that perhaps will one day make it into a book. It has equally been a story of self discovery as it has been one about health. Healing emotionally not just physically. Starting on Orkambi hasn’t just changed my health, it has changed me. It has changed who I am, what I believe in, what I value and how I see the world.
A big part of that has been the independence and freedom it has given me and ability to fit more in my life than just taking care of myself. Purpose is a powerful thing. So is feeling like you have the capacity to fulfil it. Orkambi began that process but I had to choose to pursue it.
It was about 12 months after I began Orkambi – when I could finally accept this was the real deal and not a dress rehearsal, I returned to study to become a life coach under the guidance and mentorship of one of the ladies I had seen that night I escaped hospital to go to the ‘Soulpreneur event’. I loved the idea of being able to support people to make the most of life – something that I had learnt was so precious. I just had no idea how I wanted to do that.
Over the duration of my coaching course, I delved into my inner most thoughts and realised I wanted to help people who had been where I had been – the deepest darkest depths of a health experience. My problem as I saw it though, was that many of the health coaches I most admired were all about natural health and wellbeing – a lot of that being the rejection of conventional medicine. That felt isolating to me. Trying to share that I was a passionate believer in both conventional and wholistic medicine felt messy and insincere or worse… fake.
Don’t get me wrong, I understand the scepticism and angst around pharmaceutical companies. In fact, it was my pre-existing (though somewhat naïve) beliefs around this that made accepting the good that I had experienced hard. But when you live with a disease such as cystic fibrosis and you have been down the road of doing every single thing you can – everything humanly possible to breathe a little easier but continue to decline, when someone hands you a life line you are going to consider it. When that lifeline proves to be as amazing as mine has, you can’t help but be grateful for each and every dose of pink pills and to the many people who helped create them.
It was in the prompting from an amazing coach and teacher who I was able to travel and see in New York City because of my new found health, I found my answer with just one question – what is your truth? In standing in it, you shine a light for others.
In exploring and reflecting on my journey and questioning the inner conflict I had, the answer became very clear – my truth and greatest lesson wasn’t about how to compromise or fit in, it was to share what is: As long as you know that what you are doing for your health is the right choice for you, it doesn’t matter if it fits neatly into a system or paradigm. Sometimes the path you know is right is scary, but it doesn’t always make it wrong. Health is about choosing your path, taking ownership and finding acceptance of your individual journey.
When we look at the effectiveness of any treatment (regardless of the health paradigm it belongs to) the most important question we can ask is this, does it improve life? I don’t mean in terms of numbers and statistics, I mean in terms of how an individual feels about the life they are able to live and potentially, how a treatment has changed that.
While if numbers improve (in this case indicators such as lung function, infection levels, hospital admissions etc.) it is often the case that quality of life will follow, the reverse is not always an accurate indicator. If numbers are to improve without quality of life what is the true outcome?
Along with data we have to assess approaches to health in real terms – the things that matter to people, not just on paper.
In the two and a half years I have been on Orkambi I have travelled (one of my greatest joys) to places I never thought possible in the dark and terrifying days as my lungs failed – New York, The Rocky Mountains, San Francisco and my favourite city in the world so far, Vancouver. I have done things that have challenged me, scared me and made me feel alive – mountain biking, paddle boarding and speaking to audiences of hundreds of people at a time. I have learnt new things, found new passions and been taught by some incredible teachers. I have made the most amazing and life changing new friends, met precious new little humans and celebrated birthdays and Christmases with loved ones. All of those things are the ‘why’ when we pursue health. The ultimate destination regardless of the road to get there.
Orkambi has allowed me to spend less time in hospital – in real terms that means between 4-5 extra months in my year. Last year I spent more time travelling than I did in hospital. It has meant less time doing treatments and taking less medications that may have serious side effects down the track. I now have the energy and financial resources to be more proactive and thorough in the other ways I looks after myself – nourishing my body, moving it in ways I enjoy and seeing allied health professionals – all of which have significant benefit to my physical and emotional wellbeing now and into the future and I believe, optimise the benefit of Orkambi. I do indeed still do treatments every day, but they no longer feel like they consume my life.
Significantly, this treatment has been the catalyst for me feeling like a wife, sister, friend and daughter again, no longer a patient or person that requires being cared for. It has meant my relationships have again become about giving and taking, supporting, loving and experiencing life in ways that go beyond health. That I am not always cancelling on coffee dates or turning down outings because I know they would be too much. I have regained my independence and in being able to feel like an individual again, my connections to those around me have grown stronger – especially that special bond between my husband and I. Perhaps things will not always remain this way, but it feels good to be able to offer support to the ones I love and to not always be asking for help – that suffocating feeling of being dependant.
Orkambi has allowed me to feel like me again, an updated version perhaps, but the one that feels like I have come home. One that has a future.
This is my story but one that not only mine belongs to me. It is also the story of all of those who made it possible (each and every person who helped me get from one point in my life to the next, because every step no matter how small contributed to me getting to where I am today) and all of those who it represents – not just those within the CF community but all of those who wait for a happy ending for their love story whatever form it may take. It is a story of, as the photographs capture, regaining freedom, ease and hope. A story of love – for the man who fought so hard to get me here, the life I am blessed to lead and love for who I have become. The true end points.
While some may find it funny to use the name of a pharmaceutical drug in relation to the words ‘love story’, I see it as the perfect juxtaposition. To me it is just that: A story with a sweet yet unexpected beginning, a messy and emotional middle and the perfect ending. A story that illustrates what access to new treatments truly means far beyond pink pills.
While Orkambi might not be the cure or even treatment that many hoped it would be in my journey I have realised this, you do not always have to be cured to be healed. With love, nothing is impossible.