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 special ”mini-episode”, host Jen Joly sheds light on her own family’s deeply personal journey with Pulmonary Vein Stenosis (PVS) — a story many listeners have asked to hear.
Since Summer’s diagnosis at 11 weeks old in July 2022, their path has been marked by uncertainty, fierce advocacy, and the quiet strength of one extraordinary child.
From critical care decisions to navigating palliative and transplant conversations, Jen reflects on the resilience it takes to face the unimaginable. And the moments of kindness, clarity, and courage that helped them keep going.
This story is about more than survival. It’s about thriving, even when the odds say otherwise.
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