So This Is How My Life Is Now

Humans are creatures of habit. We become accustomed to our circumstances. Most of us complain about our boring routines, but when they are disrupted, we can feel almost separated from our reality. Routines are a form of comfort, a gauge of where we’re at in our lives, professionally, physically, and emotionally.

We all have routines. For people with cystic fibrosis, routines punctuate our lives in many different ways. We begin and end our days with treatments and medications. We have frequent medical appointments depending on our health status. We get blood draws, CT scans, oral glucose tolerance tests, and sinus clean-outs. Some of us have diabetes or gastrointestinal issues.

For all of us, as limiting and frustrating as CF can be, we find a sort of baseline that we learn to deal with. We come to accept our circumstances. Routine has a way of forcing you to learn to accept things as they arise.

Humans are resilient. We even learn to accept our decline. Trikafta (elexacaftor/tezacaftor/ivacaftor), however, has changed some lives. Some people are seeing daily improvements with the treatment. I’ve had thinner mucus and have been able to take deeper breaths and belly laugh without the typical CF cough. I have more energy and noticed other positive changes. Some people on Trikafta aren’t seeing improvements, and some aren’t on the medication at all.

We must remember the populations who are awaiting a miracle treatment. We’re all still waiting for a cure. Each one of these experiences is critical and equally as meaningful as the others.

I’ve been going through a rough spot for the last week or so. I think I’m in the midst of my first exacerbation since beginning Trikafta. What’s strange is that I have to qualify my statement with, “I think.” That I’m unsure whether it is an exacerbation is sort of astounding. I’m amazed that my already pretty healthy lungs felt so open within weeks of starting Trikafta that some limited airflow is almost unrecognizable. I’m not entirely sure what is happening, but I guess this is my life now. It’s cool to be able to write that.

For years, many of us have accepted the decline that comes with cystic fibrosis. We knew it was inevitable for all of us in our 20s or later. But Trikafta and other modulators have shown what improved transmembrane conductance regulator (CFTR) function can do. We can bide our time, find new baselines, accept our improved situations, and continue to hope for new medications that improve CFTR function, kill bacteria, and hopefully even repair scar tissue.

And yet, it gets even more complicated. I’ve experienced survivor’s guilt since beginning Trikafta. I feel guilty that my sister never got to reap the benefits of modulators, about being healthier than many of my friends, and that so many people here in the U.S. and around the world still don’t have the treatment they need to survive and enjoy healthy lives.

It’s an optimistic time in the CF community, but it’s always more complicated than that. As I’ve dealt with my first possible exacerbation over the past week, I’ve been thinking a lot about my sister, my new baseline, how my life is mimicking my airways — in that it feels more open than ever before — and how we’re still fighting for so many people in our community.

This fight won’t be over for a long time, metaphorically or literally. Let’s keep working toward a better future. But for now, I’m going to rest these lungs.

Follow along with my other writings on my humbly named site, trelarosa.com. You can also subscribe to my newsletter at trelarosa.substack.com.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.