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.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.
I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.
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.