Navigating PVS

Navigating PVS
Podcast Description
Pediatric Pulmonary Vein Stenosis (PVS) is a devastating rare disease. Classified as a congenital heart disease, it affects the entire cardiovascular system and is generally most aggressive in early life.
The road taken by parents is often filled with complications, worry, fear, trauma, endless decisions, fatigue, frustration, the search for answers. And yet, hope. Joy. An appreciation for the little things. Deep gratitude. Faith. Resilience. Strength beyond imagination.
In this podcast, we'll dive into family stories and topics relevant to PVS life.
Podcast Insights
Content Themes
Explores themes of resilience, advocacy, and the emotional journey of parenting a child with PVS, covering specific topics such as caregiving experiences, healthcare system challenges, and the power of community support with episodes like 'Careers, Caregiving & Community' detailing the balance of work and parenting for moms of PVS children, and 'Across the Pond' discussing cross-cultural experiences in managing medical care.

Pediatric Pulmonary Vein Stenosis (PVS) is rare and life-changing—but you don’t have to face it alone. Join creator and host Jen Joly, a PVS mom and advocate, as she shares real stories of resilience, hope, and community from families navigating this devastating diagnosis.
In this episode, Jen Joly is joined by fellow PVS mom Lauren Bizarro, a former bench scientist who now works in cancer pharmaceuticals, to share the story of her son Myles and their family’s journey with pulmonary vein stenosis. From the shock of a “quiet baby” leading to an emergency admission, to life on an eight-week catheter schedule, Lauren talks openly about the relentlessness of PVS — how it acts like cancer, but isn’t cancer, and the impossible tasks families face along the way.
Together, Jen and Lauren dive into what life really looks like when the refrigerator breaks and the phone won’t stop ringing. They also challenge assumptions that caths are “easy,” while finding ways to keep perspective, grieve the life you thought you’d have, and the confidence needed to navigate it all.

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