Between Breaths Pediatric Lung Transplant: Before & Beyond
Between Breaths is a podcast created by a transplant mom who lived pediatric lung transplant with her son, Ryder.
This space is for families navigating life before transplant, during the hospital journey, and beyond, including the grief that often walks alongside it.
When you’re in this world, Googling at 2 a.m. leads to fear. Clinical answers don’t always give you the real-life experience you’re searching for.
Between Breaths fills the space between medical information and lived reality .... through honest conversations, shared stories, and community.
You’ll hear from transplant parents, caregivers, medical professionals, and families who understand this journey, along with reflections for those waiting, healing, surviving, or grieving.
This is not medical advice.
It’s support.
It’s shared experience.
It’s a place to feel less alone.
If you’re waiting, post-transplant, or carrying the loss of a child or friend along the way, you belong here.
Between Breaths Pediatric Lung Transplant: Before & Beyond
Oxygen Tanks & Hard Truths: The Science of Surviving the Wait
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In Episode 5, we step away from the waiting room and into the grueling daily reality of surviving the transplant list. Because the truth is, waiting isn't quiet. It isn't sitting by a phone. It's an exhausting, physically draining marathon.
I’m sharing the nitty-gritty details that no one warns you about, from doing elementary school math tethered to an oxygen concentrator, to the terrifying reality of the 6-minute walk test, to why I became fiercely unapologetic about protecting Ryder’s airspace in the hospital. We also talk about the emotional whiplash of receiving (and passing on) four separate lung offers in a single month.
But this episode is also about the hard facts. If you take away anything from this podcast, let it be this: Pediatric lung transplant is NOT just an adult transplant on a smaller scale. It is an entirely different, incredibly rare medical world. I break down the exact differences, the brutal statistics (3,000 adult transplants a year vs. just 31 pediatric), and why taking transplant advice from social media can be so dangerous for our kids.
Amidst the heavy facts, we also talk about the beautiful side of the wait: our incredible village, finding the "Transplant Mom" sisterhood, and honoring the legacy of a kindred spirit named Thomas.
In this episode, we cover:
- Making Houston "home" at Project Joy and Hope
- The daily grind: Homebound school, oxygen tanks, and clinic days
- The 6-Minute Walk Test: What the numbers actually mean
- Infection control and why I became "that mom" in the elevators
- The Vast Difference: Adult vs. Pediatric Lung Transplant facts and survival statistics
- The danger of social media misinformation
- The power of our village and the transplant family sisterhood
A special thank you to everyone who sent cards, gifts, and prayers. If you have the means, please consider supporting the organization that gave us a place to breathe when we were suffocating: https://joyandhope.org/
I’m Courtney. And I’m really glad you’re here.
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.
If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.
We’re in this together.