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.

Most people with CF know their lungs better than anyone. But the liver? It’s rarely front and center. In this episode, Ahmet Uluer, DO, MPH, Lauren Harvey and Andrea Gavin Becker talk all things liver with Jay Freeman, MD, a hepatologist at Nationwide Children’s Hospital and a leader in the GI and liver complications of children and adults with cystic fibrosis. Joining that conversation is Sarah Richards—who received a double lung and liver transplant at Duke—to talk about one of CF’s most overlooked complications: liver and biliary disease.

Sarah shares what it’s like to live through end-stage liver failure and come out the other side, while Jay explains how CFTR affects the liver and what screening for liver and biliary disease looks like—as well as early warning signs for people with CF.

We cover scoring systems, swollen bellies, ultrasound screening, and we search for answers beyond “bad luck” as the best explanation medicine has to offer.

Also tucked into the episode: a spirited debate over sandwich geometry, Batman, and a karaoke moment of brilliance.

Jay Freeman: https://www.nationwidechildrens.org/find-a-doctor/profiles/alvin-j-freeman

Find our Sarah Richards on Instagram:

Resources:

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.

In Part 2 of "CF Parenting Stories: 3 Voices, 3 Perspectives", Ahmet Uluer, DO, MPH, Andrea Gavin Becker, and Lauren Harvey sit down with returning guests Abi, Mike, and Morgan to discuss how parenting when you have cystic fibrosis evolves across stages of life. They talk about managing decline, building support, and the hard reality of not knowing how many healthy years you’ll get. There’s reflection on partnerships, mental load, and the complex role guilt plays—both in parenting and being parented.

But this conversation isn’t just about what’s hard. It’s also about presence, perspective, and the joy that is parenting—even if things feel uncertain.

From board game meltdowns to grief spirals, this episode captures the perspective, pragmatism, and constant recalibration of parenting when you have CF.

Find our guests' complete bios on Instagram:

Morgan Barett: @morganbarrett__

Abi Halstead: @abihalstead

Mike Shapiro: @mmjlshapiro

Resources:

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.

As more people with cystic fibrosis have the chance to become parents (because for the first time, many are living long enough to consider it), Ahmet Uluer, DO, MPH, Lauren Harvey, and Andrea Gavin Becker are asking what that looks like.

In "CF Parenting Stories: 3 Voices, 3 Perspectives" (Part 1), we talk with three parents with CF—Abi, Mike, and Morgan—each navigating a different version of family life with CF in the mix.

They explore exhaustion, decision fatigue, burnout, and shifting roles. They also share how they explain CF to their kids—what they say, what they leave out, and how those conversations evolve over time. There’s transparency about what’s working, what they’ve learned through trial and error, how parenting changes when your health isn’t a given, and how modulators have changed the picture for some, but not for others.

From travel-day chaos to a Scooby-Doo impression you won’t want to miss, this episode brings humor, honesty, and a deep sense of lived experience—whether you’re parenting, considering it, or just curious what it takes.

Find our guests' complete bios on Instagram:

Morgan Barett: @morganbarrett__

Abi Halstead: @abihalstead

Mike Shapiro: @mmjlshapiro

Resources:

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.

People with CF are used to waiting for the other shoe to drop—but a cancer diagnosis? That one still lands with a thud. In this episode, Ahmet Uluer, DO, MPH, Lauren Harvey, and Andrea Gavin Becker, sit down with Steve Freedman. MD, PhD, and Chelsea Lau, MD to talk about something that’s been in medical literature for decades, but is still rarely discussed: cancer risk in CF.

As more people with CF live longer—many well into adulthood and post-transplant—questions about increased cancer risk are becoming more urgent. Steve and Chelsea walk us through the science behind CFTR as a tumor suppressor gene, how chronic inflammation and disrupted gut environments may set the stage for certain cancers, and why the modulator era, while revolutionary for lungs, might not offer the same protection in the GI tract.

We talk screening, colonoscopies, and what we do (and don’t) know about breast, pancreatic, and post-transplant lymphoma risks. Andrea asks about cancer diets specific to CF, and Steve tries not to geek out about mice and microbiota.

Also: organic produce, telomeres, and a musical finale you might want to skip—but shouldn’t.

Resources:

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.

In the second part of "CF Transplant Stories: 3 Women’s Voices", the conversation shifts to a more open, deconstructed rhythm with collective reflection. Ahmet Uluer, MD, MPH, Lauren Harvey and Andrea Gavin Becker continue their talks with Tara, Beth, and Caleigh about what it takes to get listed, find a center that will say yes, and stay alive through red tape, denials, and decisions no one trains you for.

We also talk about what it means to rebuild a life after transplant—one that isn’t just about survival, but about identity, connection, and imagining a future again. That future can feel uncertain, shaped by shifting priorities and unexpected realities. From fertility, IVF, body image, and relationships to careers and community, this half is about the messy, ongoing work of finding your way forward.

Find our guests' complete bios on Instagram:

Tara Lisabeth @alivewitheverybreath

Beth Peters @bethpeters80

Caleigh Haber @fight2breathe

Resources:

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.