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 Crystal Costante for a powerful conversation about one of the most difficult topics in the PVS community: lung transplant. Crystal shares the extraordinary story of her son Nathan, who was diagnosed with complex congenital heart disease at birth, later developed Pulmonary Vein Stenosis, and became the first infant with PVS at his Canadian hospital to receive a double lung transplant.
Together, Jen and Crystal discuss the moment transplant first entered the conversation, the emotional weight of making that decision, and the whirlwind journey that led to Nathan receiving donor lungs just days after being listed. They also talk about the realities that come after transplant: recovery, rejection concerns, developmental challenges, and learning to build a full life around ongoing medical complexity.
At the heart of this episode is a story of resilience, advocacy, and hope. Crystal offers an honest look at the realities of transplant while sharing what seven years later has taught her about survival, motherhood, and celebrating every victory along the way.

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