The origin of the name Jessica is Hebrew, meaning gods grace. When I was younger I used to pay my parents out that they also chose Grace as my second name. In reality they didn’t even realise this at the time.
I wouldn’t define myself as religious but I have always had an interest in spirituality. The more I reflect on my life and the times where things have fallen together at just the right moment or there didn’t seem to be a way at all, I realise the irony or perhaps reason I was given this name. It truly is only for god’s (spirit’s, The Universe’s, a higher power) grace and perhaps a bigger plan for my life that I am here to tell this story. There are countless events that elude logical explanation or simple luck. The way I ended up dating my now husband is one of these. As is our journey with Orkambi. This is the story of how it happened and what it has meant for our lives.
Sharing this doesn’t come easily. I know too well how emotive this topic is. The controversy of the pharmaceutical industry. The heartache attached to life saving therapies. The fact that others still wait. Trust me, all those things plus a million more have played over and over again in my overthinking mind.
This drug has not just changed my health; it has changed me. In sharing this, my wish is that I can illustrate the human face of medical research – that which goes beyond numbers, figures, theories and sides. That goes beyond dollar signs or conspiracy theories. That which for many, IS nothing short of a miracle.
This is not a political story, it is a human one and I hope that in sharing it it can shine a light for others beyond just the CF community.
Three years ago today my husband and I were married, we didn’t believe on that day we would ever celebrate three years together. Our hearts were more broken on our wedding day than we ever realised. Life revolved around simply putting one foot in front of the other in the hope of moving forward. Yet here we are and what an incredibly humbling journey it has been.
Today we have the freedom, ease and hope that was our greatest wish on that day. The magic ingredients that prevented our fairy tale from turning into a tragedy. With the help of my beautiful photographer friend Emma Newby and some other angels who helped me put the shoot together, we tried to capture those feelings in a way beyond words wearing the clothes that we wore on the day we became husband and wife. Because some things have to be felt to be understood.
This is our Orkambi story. A story of embracing freedom, ease and hope. A story of love.
To say I have been waiting my whole life for a cure would be a lie. My life didn’t always revolve around Cystic Fibrosis. Until my late teens it was barely more than an inconvenience added to a list of endless list of interests. In my life, CF seemed to pale in comparison to the other ways I planned to save the world from. By the time I started to realise that CF might pose a greater obstacle than I had accounted for, I was well on my way to seeing a career for myself and carefully sculpting what I wanted my life to look like – one, five ten years in advance.
At 17 Cameron – the man that would eventually become my husband, became my chief partner in crime. I quickly made him part of the plan.
In many ways the blessing of good health made it all the more difficult when this changed suddenly in the year I turned twenty. I was no longer able to participate in the myriad of co-curricular activities that I felt defined who I was. I suddenly went from one that devoted her life to making a difference to others to someone who had to devote her life to herself. Life as I wanted it was turned upside down. I no longer felt like me.
For a period of twelve months I got through the day only with the ‘help’ of strong pain killers – opiates, to combat the growing list of health concerns.
Shortly after I turned twenty-one, on a fittingly cold, grey Hobart afternoon, I found myself in a tiny cubicle in front of a stern faced doctor who abruptly told me I needed to seriously consider a double lung transplant. In just one sentence the plans I had passionately devoted my life to creating became obsolete.
At the point it would have been easy for Cameron to get the hell out. Instead he chose to step closer and in a way only he can, reassured me that we would get through the darkness together. It was the messy beginning of a new plan.
In an attempt to get our heads around what our future would look like we planned a trip to warm sunny Queensland. We had a lovely 3 weeks there doing our best to forget reality. By the time we were ready to leave, moving there (where the healthcare was even better than the weather) was on the cards. It was a huge decision at a time we were already fragile. Despites its obvious benefits, it felt overwhelming. We couldn’t look beyond how hard it would be leaving the support of all our family and friends when life was challenging enough.
The day before we were supposed to return to Tasmania. I become unwell. Critically unwell. Very reluctantly, late on a Sunday night Cameron made a phone call to the local Cystic Fibrosis team, that unbeknown to us, was regarded as one of the best in the country. Instead of getting on a plane the following morning, I was rushed to hospital and with just 30% lung function up my sleeve, diagnosed with Swine Flu.
Had it not been for having access to the highly experienced medical team I wouldn’t have survived. My doctors to this day remind me how lucky I was. Although I was discharged a mere two weeks later, we realised we needed to remain in Queensland close to specialised support. The decision had been made for us and any final doubts were extinguished when only a few weeks later I was told my favourite doctor and the one health professional I trusted entirely at that time, was moving to Queensland to be part of the team who had cared for me during those fragile days.
Our lives in Queensland were in complete contrast to our lives in Tasmania. Cameron become my carer, our lives were no longer about university and work but breathing treatments, endlessly trying to consume calories to build my strength and as much physical activity as I could cope with. Days were long but not a lot happened, other than of course getting to another day. With a lot of hard work, we managed to buy some time between us and the transplant talk. Even though I wasn’t healthy, it was enough space for hope to squeeze in. Months in hospital and the relentless routines at home felt better to me than the alternative.
Money was tight, we missed friends and family and my health was all-encompassing. Even the smallest things were hard – a coffee date involved intensive planning and Cameron barely got any time to himself. My confidence and sense of self were non existent. The girl who had once held ambassadorships, sat on governments advisory committees and once thrived on social gatherings and mingling with high profile community members had disappeared completely. I became self-conscious and terrified of crowds or situations that involved direct conversations. The patient had consumed the person within me.
We continued on this path for four years. Don’t get me wrong it wasn’t completely awful. We spent a lot of time together and appreciated the little things – time outdoors, an endless summer paradise and the beautiful suburb we lived in. Yet we both knew it couldn’t continue like this forever.
Though we didn’t speak about it, our relationship was drifting from a romantic one, to one of a patient and care giver. We both adored one another but the dynamic was really damn hard. Cameron learnt how to cook (beautifully), how to draw up medications that at times I need him to inject through a line directly into my heart and how to wash my hair because showering was an epic event.
Instead of nights at the pub like others his age he would sit up helping me breathe and clean vomit from our sheets, not where we had come home after a few too many drinks but where I had vomited from coughing so hard (again). There was little time spent away from one another. As time went on both of us lost more of our independence and identities. Yet we still lived in hope that one day things could be the different we so desperately wanted. That hope came to life following a very romantic (and brave) live television marriage proposal, Cameron and I set a date to marry in February 2013.
It was amidst our wedding planning in 2012 we heard whispers that clinical trials for a hopeful new treatment for the underlying cause of Cystic Fibrosis might be coming to Australia. A similar treatment had recently become available for people with a different genetic mutation of Cystic Fibrosis and the results were ground breaking. I witnessed posts online of people getting their life back – the very thing I yearned for.
The clinical trial process in Australia is highly competitive. For many, it offers the hope of access to life-changing medications before they are publicly available. In a socialised health system like Australia this can be slow or even, in the case of very expensive treatments, denied completely. I didn’t feel I had the time to wait before gaining access to what could be my lifeline.
Three whole years after the fact, it became abundantly clear that moving to Queensland had been the right choice. Of all the CF centres in Australia and from only a very small handful from across the world, mine had been chosen to be involved in the trial. The treatment that targeted the underlying cause of CF and was not just another band aid was within reach. It was with a cautious heart that I allowed myself to enjoy just a tiny bit of hope.
After some very serious discussions with my physicians about what trial participation would involve, I received a phone call one Friday afternoon. To this day I remember exactly where I was standing when it came through. The doctor who had moved from Tasmania was on the other end and I could immediately tell from the tone in his voice that it was a call he didn’t want to have to make. Due to the instability in my health the team did not see me as a good candidate for the trial. I was shattered. Beyond shattered, whatever that is.
Again, Cameron had to pick me up and assure me that somehow things would be ok. After establishing why I couldn’t be considered for the trial, we set to work on rectifying what we could in the hope that I might make it on to the phase three trial if/when enrolment opened, or at least have a goal to work towards.
It meant a number of things that were significant in my life beyond just my physical health – facing my paralysing phobia of IV access and needles and starting on insulin to gain tighter control over my blood sugars. Both things had previously seemed the impossible but with a glimmer of hope on the line I felt the alternative was far scarier. It is easy to say now but in all honesty I don’t think I would have been emotionally ready for the trial at that stage either. Although I wish it weren’t so, I had to hit a deeper bottom to be able to build a stronger, cleaner foundation and (what feels like) start all over again.
As we approached 2013 I had two very big things that I needed to fight for – trial recruitment and a wedding.