Cystic fibrosis once guaranteed an early death—but a new treatment has given many patients a chance to live decades longer than expected. What do they do now? Sarah Zhang examines the far-reaching, complex impact of a drug called Trifakta:
After a year on Trikafta, Jenny told Teresa something that she acknowledged sounded “insane” but that her sister understood immediately: “To no longer be actively dying kind of sucks,” she said. The certainty of dying young, she realized, had been a security blanket. She’d never worried about retirement, menopause, or the loneliness of outliving a parent or a partner.
Cystic fibrosis had defined her adult life. Now what? For so long, she’d just been trying to see her daughter graduate from high school. Now she faced seeing Morgan [her daughter] go off and live her own life. What then? Jenny had become active in patient advocacy, and soon after the start of the pandemic, she volunteered to moderate an online patient forum on mental health for her CF center in Utah. It went so well that her longtime social worker at the center felt compelled to give some career advice: Try social work.
Jenny enrolled in an online master’s program in 2022, and this past fall she chose a practicum with a hospice agency. Having watched the death of so many friends and contemplated her own, she felt prepared to shepherd people through the sadness and awkwardness and even humor that accompany the end of life. She understood, too, the small dignities that mean the world when your body is no longer up to the task of living. One hospice patient, she noticed, often had trouble understanding conversations because his hearing aids were never charged correctly. She got the situation fixed, and on a recent visit, he wanted to listen to music, playing for her the favorite songs of his youth. On another man’s shelf, she recognized a birding book, and she made plans for a window feeder to bring birds to him.
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