It's a Lung Story: Aging and Cystic Fibrosis

In Part 2 of "CF Parenting Stories: 3 Voices, 3 Perspectives", Abi, Mike, and Morgan return to explore 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

More people with cystic fibrosis are having the chance to become parents—because for the first time, many are living long enough to consider it. And more people are asking what that actually 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 honesty 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

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—who kicks things off with a story that somehow involves gelato, a heat dome, and a medical conference in Italy—and Andrea sit down with Dr. Steve Freedman and Dr. Chelsea Lau to talk about something that’s been in the medical literature for decades, but is still rarely discussed: cancer risk in CF. As more people live longer with CF—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.

In the second part of "CF Transplant Stories: 3 Women’s Voices", the conversation shifts to a more open, deconstructed rhythm with collective reflection. The group talks 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. They 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

You asked for an episode on lung transplants—so we made two. (And there will be more). In the first half of "CF Transplant Stories: 3 Women’s Voices", we talk with 3 women from the cystic fibrosis (CF) community—Tara, Beth and Caleigh—about what it means to make the choice to pursue a lung transplant—sometimes more than once. They share what it’s like to be denied, to learn that a first set of lungs might not be the last, and what it’s like to face cancer (after two transplants). Along with survivor’s guilt, grief, and the emotional toll of constant advocacy, there’s also humor, connection, and the relief of being understood when you hang with others who’ve faced similar things. The women also reflect on the lasting mental toll of a lung transplant—PTSD, anxiety, and the emotional whiplash of preparing for both life and loss at the same time. This episode sits in the space before and after “the call”—and what it takes to say yes to the unknown. Find our guests' complete bios on instagram: Tara Lisabeth @alivewitheverybreath Beth Peters @bethpeters80 Caleigh Haber @fight2breathe

This month, we discuss something often overlooked in cystic fibrosis (CF) care: hearing loss. If you catch a faint, high-pitched beeping during the episode, don’t adjust your headphones—it’s Andrea’s diabetes pump. Ironically, she couldn’t hear it, because of her high-frequency hearing loss. Consider it a real-world remix of chronic illness, notification fatigue, and assistive tech that sometimes...isn’t. Andrea, Ahmet, and Lauren are joined by Dr. Angie Garinis: an audiologist, researcher, and expert in hearing and balance disorders—especially when caused by medications like aminoglycoside antibiotics (specifically tobramycin) commonly used to treat lung infections in CF. She breaks down the science of ototoxicity and shares what people with CF need to know about protecting their hearing and vestibular health. Annual hearing checks, she argues, should be as routine as eye exams—and yes, there are apps for that. We talk tech advances like over-the-counter hearing aids, app-based screenings, and why not all devices are created equal. Andrea also shares her post-transplant experience with sound sensitivity, balance challenges, and advocating to avoid receiving aminoglycoside antibiotics. From partner dynamics to portable audiograms, this episode blends humor, insight, and lived experience. Ghost stories, snack confessions, and singing audiologists are, of course, included. It’s the episode you didn’t know you needed to hear.

In Part 2 of "Salty and Sexy", we go further into what it means to age with cystic fibrosis—and how that intersects with reproductive and sexual health. Dr. Raksha Jain and Dr. Traci Kazmerski are back to talk about the realities of perimenopause and menopause in CF—including hormone therapy, bone density, and the growing need for cancer screenings. They also discuss recent research initiatives—including the PROTECT Workshop and the Mayflowers study—which are exploring the effects of prenatal exposure to CF modulators. We talk honestly about the unspoken intimacy challenges of CF and offer practical advice for navigating them. The conversation also addresses the emotional and clinical gaps in care for CF patients as they age, and the importance of making space for sexual and reproductive health in clinic conversations. CONTENT NOTE: This episode contains candid discussions of sexual and reproductive health in CF, including references to anatomy, intimacy, and fertility. RESOURCES: • Mayflowers Study (U.S.) https://clinicaltrials.gov/study/NCT04828382 • "Menopause in people with cystic fibrosis" https://pubmed.ncbi.nlm.nih.gov/36720079/ 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.

Sexual and reproductive health isn’t always talked about in CF clinic—but we think it should be part of normal clinic discourse. In episode 3 of It’s a Lung Story, Ahmet, Lauren, and Andrea are joined by two incredible guests; pulmonologists Dr. Raksha Jain and Dr. Traci Kazmerski, national leaders in CF sexual health research and absolute pros at keeping it real. Together, we talk about how modulators are shifting fertility expectations, what male infertility in CF actually means, the pregnancy boom, and why pH levels matter more than you’d think. We also get into why CF care teams need to talk more openly about contraception, capacitation (look it up!), and yes—there’s a chocolate visual you’ll never unhear. And don’t worry—there was so much good stuff we had to split this one in two. Part 2 will drop on 4/30—we'll we tackle menopause, intimacy, hormone therapy, and things you didn't even know you wanted to hear about. RESOURCES: • Mayflowers Study (U.S.) https://clinicaltrials.gov/study/NCT04828382 • North American Cystic Fibrosis Conference (NACFC) – Plenary 3 Presentation by Dr. Raksha Jain and Dr. Traci Kazmerski Reproductive Health in Cystic Fibrosis https://www.youtube.com/watch?v=3MwRUD222U0. 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 this episode of It’s a Lung Story, we dive into the complex relationship between mental health and cystic fibrosis. Joined by Dr. Anna Georgiopoulos, a psychiatrist at Mass General Brigham and an expert in CF mental health, we explore how medical advancements have transformed physical health without always improving mental well-being, the emotional challenges of aging with CF, and the evolving dynamics of caregiver relationships. Dr. Georgiopoulos shares insights from groundbreaking research, including the upcoming RETRIAL study, which examines how newer CF modulators affect mental health. We also discuss survivor’s guilt from an unexpected angle, and the reality that looking healthy doesn’t mean living without struggle. We’ll also talk about cheating on mental health screenings, dancing with our dogs, and the evolution of swear words in Taylor Swift's discography. Mental health is serious—but that doesn’t mean we can’t have a bit of fun along the way. RESOURCES • CF Foundation’s Mental Health Guidelines & Screening Tools https://thorax.bmj.com/content/71/1/26 • European CF Society Mental Health Guidelines https://www.ecfs.eu/mental-health-in_CF 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.

Managing cystic fibrosis is tough—but adding cystic fibrosis-related diabetes (CFRD) to the mix? That’s next level. Not everyone with CF develops CFRD, so why does it happen? And what are the emotional and mental tolls of a second diagnosis? These are just a few of the questions we’ll tackle on the inaugural episode of It's a Lung Story. Ahmet, Lauren, and Andrea explore all things CFRD with Dr. Melissa Putman, an endocrinologist and expert in CFRD at Mass General Brigham in Boston. Together, they dive into what makes CFRD different from other types of diabetes, the importance of screening (and how it can be improved), and the long-term risk factors that come into play now that people with CF are living longer. Andrea and Lauren get personal, sharing their own experiences of receiving a CFRD diagnosis. The four also discuss the stellar math skills required to constantly count carbs, why diabetes in CF doesn't get its own fancy number like Type 1 or Type 2, and the exciting potential of the bionic pancreas—and what it could mean for people like Lauren and Andrea. And of course, expect a few detours—because CFRD, much like life, refuses to follow a script. RESOURCES • North American CF Conference 2024 Plenary on CFRD: https://www.youtube.com/live/d_jxpODEKw8 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.

Welcome to the launch trailer for It's a Lung Story! In this podcast, we explore the realities of aging with cystic fibrosis (CF) in the era of modulators and medical advancements. Through expert interviews, personal narratives, and compelling storytelling, we get into real conversations about both the challenges and the resilience of the CF community. Whether you have CF, know someone who does, are a caregiver, healthcare provider, medical student, or just enjoy a good pun as a podcast name, we have something for you.