The past three years have taught me a lot about experiencing change. My life drastically changed for the better when I began taking Trikafta® in late 2019. Here are 10 things I’ve learned:
- Change, even good change — even life-changing change — can be bittersweet. Cystic fibrosis, in part, made me who I am today. I’m proud of who I am, and I am proud that CF is part of my story. Of course, I am very grateful to be a healthier version of myself, but becoming healthy has essentially erased part of my CF identity. That takes some adjusting.
- I have more physical capacity. Cystic fibrosis is an energy-zapper. The body is doing so much extra work fighting infection and trying to breathe that it’s common for people with cystic fibrosis to have chronic fatigue. Though Trikafta hasn’t suddenly given me boundless energy, that capacity to do more without desperately needing a (three-hour) nap is a unique challenge. My mind still tells me to be cautious in expending energy, even though my body says, “You go, girl!”
- I didn’t realize how sick I was. Probably as a built-in protective mechanism, I never saw myself as sick. Though looking back now, I am shocked by how sick I actually was. My weight was at an all-time low and refused to come up despite my desperate efforts. I was on a near-constant cycle of oral and IV antibiotics for lung infections. I was coughing up blood in my sputum. My chronic coughing led to constantly tight and sore muscles — my pelvic floor became so tight that it was affecting my sexual health. And I’d developed severe anxiety with some depression sprinkled in. But somehow, I still thought I was relatively healthy.
- My body is resilient. Despite 27 years of abuse from cystic fibrosis, my body looks and functions like a basically healthy 31-year-old’s body. It’s pretty incredible to me that my lungs — despite chronic infection and scarring — rid themselves of excess mucus over the course of a couple of days, and now essentially function as though I never had CF! Cheeky little things, those lungs.
- CF care teams are truly unique, and perhaps — strangely — I miss the relationships I had with my teams. When you’re constantly emailing your CF nurse, your CF appointments are over two hours long, and you see the same faces at clinic every three months for years and years, a bond is created. Inevitably, the closeness that I had with my CF care teams in “The Before Times” has been watered down in “The After Times.” I am much lower maintenance these days — which is wonderful — but part of me misses the connection I had to my CF care team before my health improved so much.
- My respiratory therapists (RTs) knew what they were talking about. Indeed, I did need to keep my lungs as healthy as possible so that when a treatment that addresses CF’s root cause came along, I’d have good enough lung function to go on living without the need of a lung transplant. Thank you, RTs, for your sage advice.
- It’s easy to forget how bad things were once you’re better. Again, this is probably a function of nature (kind of like how we forget how excruciating childbirth is so that we do it again), but it’s so easy to forget the details of the suffering of “The Before Times” while I’m busy living my life in “The After Times.”
- Relationships change when you go from being chronically ill to still technically chronically ill but … not? Caregivers are no longer needed in the same way they were before. The way you identify and relate to yourself changes. The relationship to the CF Foundation and its community changes.
- I’m replacing my “CF patient” identity with other things. Though I still have cystic fibrosis, I really don’t feel like I do anymore. I no longer have to do virtually any of the things I had to do before Trikafta to keep myself healthy. I no longer do breathing treatments daily, I’ve gained more than enough weight (I have a healthy weight for the first time in my life), and — perhaps the biggest hallmark of my disease — I no longer cough constantly. Since starting Trikafta, I became a mom to twins (born October 2020), which has become the most wonderful addition to my identity! I’m also a gardener, writer, and a normal human living a healthy life.
- There’s a lot of inequity in this world when it comes to health care. Because of the systems in place, because of greed, too many people around the world who would benefit from taking Trikafta are still dying of cystic fibrosis because they cannot get access to this modulator therapy. If I lived in a developing country, if my skin weren’t white, if I wasn’t a citizen of the United States, my outcomes might look quite different than they do.
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