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Episode 4: The In-Between Life : Waiting on the List

"You’re living your life, but you’re also living on a runway. And you don’t know when the plane is coming."

Being “active” on the transplant list isn’t a passive wait; it’s a high-stakes, full-time job. After relocating to Houston, Courtney and Ryder entered the strange, suspended state of the "In-Between." In this episode, Courtney pulls back the curtain on their daily life.

This episode serves as both a story of a mother’s intuition and a practical roadmap for families navigating the transplant journey. Courtney breaks down the Transplant Education Book, and explains the gritty reality of keeping a child "sick enough to need a transplant, but stable enough to survive it.

In this episode, we discuss:

• The Lifelines: Navigating MyChart and why your medical team becomes your new family.
• The Litmus Test: The anxiety of the PFT glass booth and the one number (FEV1) that owned their emotions.
• The Rules of the Road: Understanding the Compliance Agreement, the reality of Status 7 (Inactive), and why infection prevention is a matter of life and death.
• Lung Therapy vs. Play: Why Ryder’s "lung therapy" and OT sessions were deposits into a bank account he would soon need to withdraw from.

 Whether you are a transplant parent sitting in a waiting room or a listener following Ryder’s brave journey, this episode explores the discipline, the fear, and the incredible strength required to stay ready for "The Call." 

Between Breaths is a space for families walking through pediatric lung transplant. The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

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We’re in this together.