Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
My voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.
Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.
At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.