By Tayla Purves
One of my biggest fears before starting Trikafta was that coughing all the old, sticky, smelly, gross mucus would hurt. You see, before I started Trikafta, my lung function had dropped to 40%.
So, naturally, at 16, I was scared it would hurt. Now having started the drug twice, I can safely say that, from my experience, I felt like I was hit by a truck hit me for a few days. Let me tell you why.
I felt like I had the flu both times. My sinuses ached, I was coughing all sorts of ungodly tasting, coloured, shaped mucus, and I was tired. But it eased after two or three days both times, and you know what? I had airway relief almost instantly.
It didn’t hurt, much to the surprise of my sixteen-year-old-self back in 2019. Instead of it hurting like I feared, it was a weird realisation. I could feel very cold air in the bottom of my left lobe – and I could take a deep breath, something I had never done before. Still an indescribable moment.
The second time I started it was in May 2022, I had the Trikafta purge once again, just less severe after 10 months of not having it (long story – drug trial rules).
Green and black speckle dots of mucus, no bleeds like I had endured from 2021-2022 while off the drug; instead, I was met with those achy sinuses, a runny nose, and an annoying rumbling of mucus my body was hard-core rejecting. Oh, and I was SO hungry. And let me tell you, a girl can eat!
Pre-Trikafta the first time around, I was 40kgs and struggling to put on weight at 180-183cm. After two or three weeks, I had doubled my weight and could no longer athletically get through the beep test. I was devastated; I had worked hard on my abs and being agile, fast, and as fit as I could to be able to fight off infections.
This time around, I had put on more weight again after dropping to a manageable weight. As a young woman, I have hated this weight gain, and it has absolutely taken a toll mentally. It hasn’t been three Mars bars a day to keep weight or gain it, or Sarah Lee chocolate cake either. After 16-17 years of struggling, I no longer must force myself to eat. I can eat less and maintain it (although, wouldn’t mind losing the gut I never thought I’d be able to grow).
It’s important to remember what your previous struggles were and remind yourself you look healthy. It’s a compliment I get all the time, and I still don’t notice the physical difference from beforehand, but everyone around me does. I always shrug it off because of how I feel with the extra weight around me, which is so silly considering where I was before my miracle drug.
I was told by one of my nurses recently that I would outlive them – a first apparently for them, and for me too. I am still scared of conforming to the original expiry date of fourteen, and now at 21 I think about it less, but there’s now the worry of those around me going before I do. Which FYI, no one prepared me for that realisation.
I have endured a whole new set of progression worries, that’s only natural. If you’re like me and were okay with death, scared of transplants, scared of leaving before you got the chance to live… you would be wildly surprised with what your body can do now.
The anxiety of my health isn’t as prevalent as before, but now there is a new kind of lease, a new mentality of, “Screw it, I have time. Let’s do this,’ has come into play.
For me, Trikafta has allowed me to study at university and get good grades, (better than ever at high school might I add), and it’s also allowed me to get a part-time job in motorsport with Karting Australia.
There is still a learning curve of my limits, which will always be there the older I get… but I have time and energy to do so much more.
I don’t need to spend hours on antibiotic nebuliser treatments, or hours lying in bed – although how good is a lazy pyjama day? But, I now have time and energy to do what I enjoy. Life is so much brighter with Trikafta onboard and I hope, if you are able to take Trikafta, it is for you too.
*It’s important to note that everyone’s reaction and response to medication is different. While some people may experience positive outcomes on certain treatments, others may have different experiences, or they may not be eligible to receive the same medication. To understand what medication(s) may be appropriate for you, or if you have any concerns about your current treatment, please speak to your clinical team.
