TRIKAFTA/ KAFTRIO

My personal journey with Trikafta started in January 2018 when I was first given Orkambi (the predecessor of Trikafta/ Kaftrio) I was admitted for the 2nd time in 6 months or so and was on my usual IV treatment. I was getting admitted very regularly for the few years prior, so my team had managed to arrange getting a trial on Orkambi whilst doing the initial assessments to be placed on the transplant waiting list. My lung function had been around 18% for a few months and had decreased to somewhere below 16% (any other lung function tests were unsuccessful). I had my trail for a week while doing intense physio and leaving during the day to increase my calories. After 2 weeks I contracted another infection from the ward, and I ended up in for a total of 6 weeks. Thankfully, it actually worked. And despite being in for such a long time my lung function has increased to around 28-30% and my weight was slowly getting back to normal. Ultimately, I had managed to get healthy enough to be considered too healthy to warrant needing a transplant.
I was hoping this was it, I was on the way of getting not just better but better than I ever had been. Unfortunately, this wasn’t the case and before long my weight and lung function were fluctuating again.
I was still campaigning for the drug as it had been expected to increase the lives of children who start the drug by increasing their life expectancy to around sixty or so.
Eventually on the first of July 2020 I started Trikafta. That’s when the improvements started. My weight eventually stopped dropping as drastically when I was unwell and my lung function reached over 30% for the first time in 6 years. I was beyond ecstatic. Even today my weight hasn’t dropped below 50kg and my lung function hasn’t dropped below 24% (that was my last bad chest infection around 2021). On top of that I’ve managed to have only three hospital admissions in 4-5 years… and two of them was for bowel blockages.
Recently it’s been confirmed that with regular treatments and support the life expectancy for children who start Trikafta or Kaftrio toady is around 83 years. 83! That’s amazing. Their experience of Cystic fibrosis is going to be worlds apart from the average Cfer of my generation. I feel like we did it in some way, I’ve always wanted to make the world a better place and while my donation has been minuscule when compared to those who had donated money for years, the researchers and scientists that actually made these treatments, I like to think I helped. I still want to fight, if not for myself (I do that daily just living) but for others that can have it better than I did.
We don’t yet have a cure for CF and there are still thousands of people living with CF that aren’t eligible for Trikafta so I’m not stopping. Think of the millions of lives saved and lives changed in just a couple of decades. That is reason enough to keep going. One poorly written blog post, one small charity event, one break through at a time.
Keep Fighting Warriors! You got this!