“Take in your final breath before your first new one.” Those were the words 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, living with cystic fibrosis, and a double lung transplant recipient. Her story is one of resilience, loss, hope, and purpose. From being diagnosed at birth 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.
Jillian shares what it was like growing up with CF, supported by family and shaped by early connections within the community. She reflects on how advocates like Emily Schaller and the Rock CF Foundation influenced her outlook and helped her feel less alone.
We also talk about her 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. 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 Organization.
Her story is not just about survival—it’s about living with intention, honoring loss, and creating something meaningful from it all. 💜
What Jillian hopes to do as her Foundation grows:
2026 program updates:
Nutritional Support- grocery assistance, food journal (In the future I would like to partner with a RD and/or Nutritionist to help provide personalized recommendations, meal planning, recipes, etc.)
Home Air Quality Support- air filter units and humidifier devices
Peer Mentorship- 1:1 coaching to help with weight management and treatment adherence
Hospital Comfort Blankets- handmade by volunteers for CF children in the hospital
Contact Jillian here: Email: Jill@jilliansjaywalkers.org
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