Pain is one of the most common experiences in cystic fibrosis—and also one of the most under-discussed. In this episode, Ahmet Uluer, DO, MPH, and Andrea Gavin Becker are joined by Elisabeth (Liz) Dellon, MD, MPH, a pulmonologist and palliative care physician who helped lead the CF Foundation’s pain management guidelines, to explore why pain so often goes unrecognized, under-treated, or minimized in CF care.

They discuss the data, which shows that chronic or recurrent pain affects most adults with CF—and Liz explains how pain gets buried beneath packed visit agendas, stigma around treatment, and uncertainty about what kind of pain clinicians are even asking about.

Andrea shares what it’s like to live with a constant background hum of pain, how people with CF learn to underrate it, and adds her voice to others with CF on how being disbelieved can feel worse than the pain itself.

The conversation reframes pain as more than a number on a scale, looking instead at pain interference, mental health, sleep, menopause, movement, and the cumulative toll of aging with CF. They discuss multimodal and palliative approaches, exercise, non-pharmacologic tools, opioids and stigma, transplant-era trauma, and the role of trust between patients and providers.

Also: gas pain intense enough to send spouses into panic; Taylor Swift finding time to fill in as a physical therapist; and why pain deserves a bigger seat at the CF table.

The content presented in this podcast is for informational and educational purposes only, and is not intended as medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

In the season finale of “It’s a Lung Story”, Ahmet Uluer, DO, MPH, Lauren Harvey, and Andrea Gavin Becker return to the studio for a deeply honest conversation about caregiving in cystic fibrosis—what it demands, what it gives back, and what often goes unseen.

They’re joined by two caregivers: Pam Richards, mother to an adult daughter living with CF, and Shannon Mortimer, a CF spouse. Pam and Shannon share what it means to love and care for someone through years of illness, hospitalizations, and transplant care. They talk about how stepping in and out of the caregiver role shapes identity, family dynamics, and emotional endurance. They speak openly about trust, guilt, burnout, faith, support, and the emotional aftermath that doesn’t automatically resolve when health stabilizes.

Woven into the episode are voice messages from people living with CF, offering gratitude to the caregivers who manage medications, sit through long hospital nights, absorb medical trauma, and quietly hold families together.

The content presented in this podcast is for informational and educational purposes only, and is not intended as medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

For many couples in the cystic fibrosis community, building a family means facing infertility—and deciding how to move forward when biology makes things harder, yet again. In this episode, Ahmet Uluer, DO, MPH, Lauren Harvey and Andrea Gavin Becker dive in with Darcy Esiason—CF spouse, mom of two, therapist, and director of the Boomer Esiason Foundation’s IVF Grant Program. We talk about choosing to be with someone with CF, love, and what it takes to stay grounded through the stress and uncertainty of IVF.

Darcy shares the story of how she and her husband, Gunnar, met, fell in love, and navigated the realities of infertility—from the science (and yes, the scalpel) to the surprising moments of laughter, spirituality, and grace that carried them through. She also talks about the work their foundation is doing to make IVF possible for more people with CF—one beautiful baby at a time.

It’s a story about persistence, partnership, and finding joy and humor in unexpected places—including driving a vial of testicular tissue across town before sunrise. Whether you’re navigating IVF yourself or just curious what family-building looks like when CF is part of the story, don’t miss this episode.

Resources:

https://www.esiason.org/assistance/ivf-grant/

NACFC 2025 presentation by Dr. Ahmet Uluer and Dr. Karen von Berg: “A Breath of Fresh Age: Redefining Growing Older With Cystic Fibrosis” https://www.youtube.com/watch?v=OHg8Pr0J8_o

The content presented in this podcast is for informational and educational purposes only, and is not intended as medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.