Miracles happen when you least expect them. You manifest them for years, forget about them, give up on them completely, and then boom! You’re blessed with a miracle. In my case, this happened with a life-changing CFTR modulator, Trikafta (elexacaftor/tezacaftor/ivacaftor). It came as a pleasant surprise thanks to a team of angels who thought only of the betterment of CF patients, not of themselves.
They say that people struggling with chronic health complications often have a different kind of resilience, one that makes them so strong and so powerful that they feel undefeated. Even after recovering from several infections and complications, we face the world head-on with a smile on our faces. Cystic fibrosis may not be a visible disease, but the effects it has can be long-lasting.
In May 2016, I got diagnosed with CF, and nine years later I got the news that Trikafta had arrived in Karachi, Pakistan, where I live.
Those nine long years were nothing short of a relentless roller coaster that just wouldn’t stop. I was still getting used to my new diagnosis, but I also wanted to continue my studies at university. Then, just as I got used to that university routine, COVID-19 came along. Getting COVID and post-COVID infections made my lungs weaker, and I had no hope of it getting any better, apart from doing my regular daily treatments like airway clearance and medications. However, I did not want to keep my hopes high about getting Trikafta in Pakistan because Pakistan is a developing country and the possibility of getting these medicines is close to none. But deep down, I was secretly hoping and praying for some kind of a miracle, and of course other people affected by CF were hoping and praying for it too.
Graduating from university amid severe infections was nothing short of a challenge. On one hand, I was worried I’d have to repeat my last semester and graduate later than expected. On the other hand, that wasn’t as big of a deal as my health, which had deteriorated. Despite this, I was able to overcome all of this thanks to my own willpower and relentless hope.
As the poet Alexander Pope very aptly put it: hope springs eternal in the human breast. Hope for a life not defined by pain, chronic infections, and countless limitations. Hope for a brighter, longer, and most importantly, healthier life. Hope for a future chock-full of possibilities, where no one takes even a second of their lives for granted but instead takes in all the positive things nature and life have to offer.
Trikafta has been truly life changing. Before Trikafta, I had resigned myself to my fate. But God had other plans. He obviously didn’t want to leave me alone in agony. I went from being unable to fully catch a breath to experiencing what a full, comforting inhale feels like; from facing pulmonary exacerbations every time the seasons changed to having almost no mucus at all; from being absolutely gutted I wasn’t able to gain weight to having an almost normal appetite and slowly gaining weight; from being fatigued every single second of the day to feeling like I can almost function like every other person (with little breaks). I never knew — in fact, I never thought — that this is what it feels like to function normally. This certainly is something new to get used to, but hey, am I complaining? Absolutely not! This is something I can happily adapt to without any complaints.
I continue hoping and praying for more clinical trials and drugs that could help end cystic fibrosis completely. Until then, let’s all just hang in there together, advocate for each other, and never lose hope of a better future ahead of us.
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