Ashley from the Bay of Plenty shares his Trikafta story.
Seven weeks ago, my life was very different. My lungs were functioning at 22%, and life was hard. I required oxygen 24 hours a day. Walking to the bathroom took a lot of energy, and walking to the letter box wasn't even an option. Some days just making conversation was hard and I dare not laugh because of the fear that it will set me into a coughing fit. Eating was getting harder every day, my weight was dropping. 44kg is well below the minimum for my size, to be considered for a transplant. I had a peg (feeding tube) inserted to try and help with the weight struggle, I’d have supplemental feeding through the tube overnight.
My days consisted of waking up in the morning and doing my lung clearance, followed by an array of nebulisers and physio. I’d then struggle my way to the kitchen and force myself to drink a couple of Ensures (supplemental feeding), take all my pills.
The rest of my day wasn’t much different. I’d be trying to eat, rest, and when the afternoon came around, it was time to start the treatment regime again for another few hours. My life had been taken over by CF.
I found myself in hospital every two months for three weeks at a time, and it was getting to the stage that even after the three weeks of antibiotics I wasn't feeling that much better. I knew I was running out of time and options, and putting the weight on to be able to get a lung transplant seemed close to impossible.
Then I got a phone call from my CF nurse. She told me I had been approved for the Managed Access Programme for Trikafta. Two days later I took my first dose. By day three I no longer required oxygen and my appetite was coming back. By week two I did my first small hike, I noticed my weight was going up, and my face had started to fill in. I had colour in my cheeks, and for the first time in years I had energy to actually enjoy life again.
Today is week seven, and I have gained 8kg, my lung function (fev1) is up to 33%. I feel it improving each day as I get fitter. I no longer require any of my nebulizers or inhalers. My body has changed so much and so fast I feel I no longer recognise myself. I have been given a part of myself back; I can now laugh with friends, and spend quality time with family. And to make this possible, all I have to do is take three tablets per day. It's absolutely a miracle.
I'm hoping to get back into the workforce in the near future and start to get my life back in check. I now have to start planning for the future, which is something I never had the privilege of doing before.
But now I find myself frustrated because I have to watch many young people with CF, including my own younger brother, go down the same path as me for absolutely no reason other than money. Trikafta needs to be funded for all Kiwis with CF.
