Advertise on podcast: It's a Lung Story: Aging and Cystic Fibrosis

What happens when the heart becomes part of the cystic fibrosis story? In this episode, Ahmet Uluer, DO, MPH, Lauren Harvey, and Andrea Gavin Becker welcome cardiologists Evan Manning, MD and Mark Harvey, MD to discuss the connection between cystic fibrosis and cardiovascular health. CF care has historically centered on the lungs, but as people with CF live longer, what have we overlooked about the organ sitting right next door?/p Together, we explore how inflammation, cholesterol, blood pressure, diabetes, and CFTR modulator therapy can affect heart health, why people with CF may face an increased risk of cardiovascular disease, and what symptoms shouldn’t be ignored. We also talk about plaque, medication interactions, the importance of knowing your numbers, and why sometimes the best place to start is with the basics. As people with CF are living longer, what do we know about protecting the heart—and what are we still trying to figure out? Also: Dr. Dad on the dance floor, the heart as a next-door neighbor, and, you AORTA know, a hearty amount of heart puns.

Welcome to the first episode of “Salty Stories”, our new recurring series featuring three voices from the cystic fibrosis community. Each episode explores a different theme. The only rule? CF has to be part of the story. We’re kicking things off with “First Dates”, naturally.

What if the future you spent your entire life preparing not to have suddenly became possible? In this episode, Ahmet Uluer, DO, MPH, Lauren Harvey, and Andrea Gavin Becker welcome journalist, war correspondent, and author Will Cathcart, who lives with cystic fibrosis, to discuss his debut novel, This Is How People Die—a literary thriller that blends espionage, romance, and cystic fibrosis into an unforgettable exploration of survival. Together, we explore how Will transformed the realities of growing up with CF into fiction, why survivor's guilt and the CFTR modulator era became central themes in the novel, and how those experiences continue to shape his work around the world and his ongoing fight for equitable access to CF modulators. Also: Anthony Bourdain, Bob Flanagan, and the Gullah legend of the Haint.

In this episode, Ahmet Uluer, DO, MPH, Andrea Gavin Becker, and Lauren Harvey explore one of the most talked-about emerging therapies in cystic fibrosis care: bacteriophage therapy. They’re joined by Steffanie Strathdee, PhD, infectious disease epidemiologist, co-founder of UC San Diego’s Center for Innovative Phage Applications and Therapeutics, and co-author of the memoir “The Perfect Predator”—to discuss how viruses called bacteriophages help fight dangerous antibiotic-resistant infections. Steffanie shares the story of how phage therapy helped save her husband’s life after he developed a multidrug-resistant superbug infection no antibiotics could treat, and explains why scientists are once again turning to phages after decades of relying almost exclusively on antibiotics. Together, they unpack the science behind phage therapy, the challenges of bringing it into mainstream medicine, and what phage therapy could mean for the CF community, where chronic infections, repeated antibiotic exposure and multi-drug resistance remain major concerns. They’re also joined by Maggie Donovan, who shares her experience becoming one of the first people with CF to receive nebulized phage therapy for chronic MRSA through the FDA compassionate use pathway. Plus: lazy phages, sewage and duck ponds, and why some of the most cutting-edge medicine in the world starts in places most people would never willingly visit—deep in the bowels of large cities!

In this episode, we talk with Karen von Berg, a physical therapist at Johns Hopkins who’s spent her career helping people with cystic fibrosis navigate movement, function, and the realities of living in their bodies over time. We go beyond what most people might expect from physical therapy, diving into posture, breathing mechanics, and our favorite, exercise as snacks (really!). We also talk about the pelvic floor (yep, you have one) and its connection to incontinence, pain, and why so many people don’t bring it up. We get into what actually makes an exercise plan stick, why it’s so hard to know where to start, and how the all-or-nothing mindset gets in the way when energy, time, symptoms, or blood sugars don’t cooperate. Andrea and Lauren share their own experiences: what it’s like to lose momentum, struggle with motivation, and find movement that doesn’t look anything like a traditional workout. Also in this episode: weighted hula hoops, backstage bourbon, and Jane Fonda—naturally.

In this episode, we talk with science journalist Bijal Trivedi, author of “Breath from Salt,” the definitive and surprisingly human account of how families, scientists, and clinicians helped transform cystic fibrosis (CF) from a fatal childhood disease into one of the greatest success stories in modern medicine. Joining the conversation is Kate O’Donnell, president of the Joey Fund and sister of Joey O’Donnell, whose life and legacy helped inspire one of the most powerful fundraising movements in the CF community. Bijal shares the story behind the book—how a single interview with Joey’s parents, Joe and Kathy O’Donnell, revealed a much bigger narrative about relentless parents, brilliant scientists, bold philanthropy and the power of community that helped drive breakthroughs like the development of CFTR modulators like Trikafta. Kate reflects on growing up in a family shaped by CF advocacy, what it means to carry that legacy forward, and how the community continues pushing toward treatments for everyone. We talk about the messy, human side of scientific progress: false starts, competing egos, impossible odds, and the moments when one insight can change everything. We also explore the infrastructure that helped make those breakthroughs possible—from centralized CF care centers to the patient registry that allowed researchers to track mutations, outcomes, and treatments across an entire community. Finally, we explore the questions the CF community is asking now: how the story evolves as people live longer, how to support those still waiting for therapies and why the work isn’t finished yet. Also in the episode: trips to the morgue, dark humor and a very special appearance by an English bulldog named Beans.

Most people with cystic fibrosis (CF) know their lungs better than anyone. But what happens when living longer means needing care that reaches beyond the lungs? In this episode, our very own Ahmet Uluer, DO, MPH—co-founder of the CFRI Patrick Nash Fellows Program—joins Carolyn Nash to share the story behind the national initiative designed to prepare subspecialists to care for adults growing older with CF. Inspired by Patrick Nash’s legacy, the program was created to tackle one of the most urgent challenges in cystic fibrosis today: a growing mismatch between the number of adults with CF and the specialists prepared to care for them. From GI and liver disease to sinus health and cancer risk, the burden too often falls on patients to educate their own doctors. You’ll hear from inaugural fellows Spyros Zouridis, MD, a gastroenterology and hepatology fellow, and Jessa Miller, MD, a rhinologist and skull-base surgeon focused on sinonasal health. They share their experiences and what surprised them most, along with how centering real patient stories is reshaping the way future specialists learn to care for adults with CF and what it means to build a national network of CF-informed subspecialists. We talk about mentorship, research, and what this could mean for people with CF—now and decades from now. Along the way, you’ll hear about colonoscopy heroics, the ketchup-on-hot-dog controversy, and the fellowship’s true “secret sauce.” 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.

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: @sarahjoysofcf 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.