“Take in your final breath before your first new one.” That could be a little scary to hear. It’s what Jillian heard before her double lung transplant, words that would mark the end of one life chapter and the beginning of another.
Jillian is 34 years old and her story is one of resilience, loss, hope, and purpose. From being diagnosed at birth with CF, to navigating adulthood, Jillian has faced more than most, but she continues to show up for her life and for others in the cystic fibrosis community.
In this episode, Jillian shares what it was like growing up with CF, supported by family and shaped by early connections within the community. She reflects on other CFers like Emily Schaller, Founder of the Rock CF Foundation influenced her outlook and helped her feel less alone.
We also talk about Jillian’s college years, what it meant to pursue independence while managing a complex disease, and how life shifted as her health declined into end-stage lung failure. Jillian walks us through the transplant process, not just medically, but emotionally, the fear, the uncertainty, and the strength it takes to keep going.
One of the most profound parts of Jillian’s story is the loss of her twin brother to cancer. She opens up about that grief and how it continues to shape her perspective, her resilience, and her compassion for others.
Throughout it all, Jillian emphasizes the importance of support systems and mental health, especially during the transplant journey. No one goes through something like this alone, and her story is a reminder of how critical connection and care truly are.
Today, Jillian looks toward the future with hope. She shares her dreams of building a family, continuing her advocacy work, and expanding the impact of the nonprofit she founded, Jillian’s Jay Walkers. She’s in the beginning stages, but has big plans to help.
Her story is not just about survival, it’s about living with intention, honoring loss, and creating something meaningful from it all.
Living with cystic fibrosis podcast. Thanks to our sponsor, Recodetx
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