The In-Between Life : Waiting on the List

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.

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.

Transcript

 Hi again. I'm Courtney and today we're talking about something people don't always understand until they live it. The waiting isn't passive. It's not. You're listed and then you just wait. Being active on the transplant list is a strange suspended state where life becomes both intensely routine and completely unpredictable at the same time because you're living your life, but you're also living on a runway and you don't know when the plane is coming. So this episode is called The In-between Life waiting on the list. And I want to take you into what that looked like for us for Ryder after we relocated to Houston and we became officially active. Because if you're in this world right now, if your child is listed or you're heading towards listing, I want you to hear this episode and think, okay, this is what it actually looks like this is how families survive this part. This is how you stay ready. Our new Home in Houston project Joy and Hope. Once we got settled into our new home in Houston at Project Joy and Hope, everything changed, but also nothing changed. The big move was over. We had the keys. We had the oxygen equipment set up. The boxes were unpacked and the oxygen concentrator was humming in the corner like a constant reminder. This isn't vacation. This is relocation for survival. And it sounds dramatic, but it's true. Because once your child is active on the waitlist, it's not just a label, it's a lifestyle. It's a schedule. It's rules. It's monitoring, it's preparation. And you're no longer just mom. You become caregiver, scheduler, advocate, nurse coordinator, infectious control officer and emotional support all at once. And you do it while trying to keep your child feeling like, well, a kid. Once we hit Houston, our lives revolved around Texas Children's and the Medical center. And if you looked at our mychart, it was honestly just a sea of appointments. Not once a week, not every now and then. It was a cycle. A constant loop of therapy, clinic, labs, testing check ins, repeat. And I'm going to say something clearly for any parent listening. Waiting is work and you are working hard just to keep your child eligible and strong enough to survive what's coming. Okay, so let's talk about my chart. Because for us, my chart wasn't just an app, it was oxygen. It's where your whole life lives from this point on. Appointments. Messages. Test results after visit summaries, sometimes even education questionnaires and updates. And yes, you can pull up your upcoming appointments in a calendar view and even download them onto your calendar. I did that to keep me sane, and Texas Children's describes my chart as a way to communicate with providers and access your results. but I'm not explaining it like it's a brochure. I want to explain it like a transplant mom. So if you have a question, go to my chart. If you notice a symptom, my chart. If results drop, My chart. If you need clarity. My chart. I lived and breathed that app. And honestly, I still do. Because transplant doesn't end after transplant. Transplant becomes your new baseline. And my chart becomes the place where you learn how to track, communicate, and advocate without waiting on phone calls. So what did our week look like? we had physical therapy three times a week, but we called it lung therapy. Ryder had been doing it for five years already. It just became more intense. And not because that was the official name, but because that's what it felt like. It wasn't just stretching. It wasn't just rehab. It was literally training his body to keep going even when his lungs were in failure. Pulmonary appointments were constant check ins with the lung transplant team watching trends, symptoms, oxygen needs and stability. There was endless blood work, monitoring the body, screening for issues, making sure nothing pops up that would make it unsafe to transplant. We also did imaging and X-rays to watch for infection changes complications. And then there were the pulmonary function tests. The days you hold your breath while your child tries to force air out of their lungs that they don't want to give. And if you're new to this world, the education book explains pfts as tests that measure how much air lungs can breathe in and breathe out. But what it felt like was we were watching a number to tell us how much runway we had left. That's the truth for families in this world. PFT day can be one of the most anxiety inducing days. Your kid walks into the glass booth and they're trying so hard, and you're staring at the screen waiting for a specific number, a number that really doesn't make any sense. The fev1. And that stands for forced expiratory volume in one second. So in plain English, it's the amount of air your child can force out in the very first second of a hard exhale. And if you've never watched your kid do this, it's hard to describe the intensity. It looks simple, but it is not. It's effort. It's coaching. It's repeat attempts over and over. And it's your brain going. Please don't drop. Please don't drop. Just push. Because here's the thing. We weren't expecting to improve. We knew it wasn't. He was in end stage lung failure. But we were praying for stability. And what you track isn't just the number. You track the trend. If it drops, sometimes it tells you the disease is taking more territory. Sometimes it's just you need to try again. So PFT day became this weird mix of science and fear and hope. And a ten year old trying his best not to cry because he knew what those numbers meant, even if he didn't fully want to. Now, I want to talk to you about the transplant team, because this is one of the most important parts of this episode for other families. When you're at a place like Texas Children's, they describe the lung transplant program as a multidisciplinary team. It's a mix of surgeons, pulmonologists, coordinators, social workers, child life dietitians, pharmacists, and PT and OT. And that sounds like a nice sentence until you live it. Because that it really means is you go to them for everything and I mean everything. Meds, vitamins, what your child can eat, what they can't eat, when to call, what's normal. What's not. When a fever is, watch it versus go now. When do they have a cough? What you need to do if they're exposed to illness. What you do if insurance changes. What you do if you travel. What you do. If you miss a dose, what do you do if you think you miss a dose? And then there were times Ryder got sick. Fever, viruses and the team would manage it. Support viral panels. Next steps. Meds monitoring. So here's what I want to tell every parent. Listening. Get comfortable with your team. Learn their names. Ask questions. Ask the annoying questions I did. I still do ask again if you don't understand. Because after transplant they're still your people. They're the ones you run life through. Let's go over our core team. On our pulmonary side, we worked with Doctor Malakoff. Doctor Gosnell, we called her doctor G. Doctor Moreno. And then we had Dallas and Anna, who were our lifelines in the day to day rhythm questions, cordinations What we do next And then there were the cardiothoracic surgeons, the people who perform the transplant. Initially we met Doctor Adachi And Ryder thought he was the coolest person on Earth. He was calm, gentle, one of those people where when they speak, you feel your nervous system drop out of fight or flight. Doctor Adachi shared that his family was originally from a city in Japan known for samurais. Ryder was hooked. Like mom, that's my guy. But transplant is unpredictable. And when Ryder got called for transplant, it happened to be the one time Doctor Adachi was out of the country. So we were blessed with the surgical director, Doctor Hinely. He was incredible. And yes, there is a funny story about me hugging him that I will save for later. Because poor guy, I'm sure I made him very uncomfortable. But it's one of those moments where your body just reacts. Gratitude looks weird when you're living in survival mode. Okay, now we need to talk about the transplant education book. When you get listed or active, you're given this thick binder. The education book. And it's not just information. It's basically welcome to your new life. And it covers things that every family needs to understand. Because this process is not just medical, it's logistical, it's emotional, it's financial and it's strict. So when I say you run everything through your team, I'm not being dramatic. This is literally built into the success of the transplant. Good medical adherence, good communication, follow up, infectious avoidance, medication schedules and lifestyle changes. That's not extra. That's survival. And your child depends on it. So if you're listening and you're early in this process, I want you to hear this. If things feel slow sometimes it's not because your urgency isn't real. It's because transplant has layers and they're trying to keep children safe. Now let's talk about the thing that can haunt families. Status seven inactive. The education book explains that status seven means temporarily inactive on the transplant waiting list, and some of those reasons can include infections, abnormal test results, unstable conditions, insurance changes, or pending authorizations. But here's the emotional reality even if wait times still accrue you can't receive offers while you're inactive. So you become obsessed with staying healthy. But you're also living with a child whose body is failing. That's the paradox. The book explains a reason a child can be removed from the waiting list In scenarios like your too well for transplant, you're too sick for transplant. If your child might not survive the surgery So if you're hearing this and thinking, oh my gosh, that's terrifying. Yes, it is, because you're trying to keep your child in that narrow lane of being sick enough to need transplant but stable enough to survive it. Another section that matters a lot is the part where the education book basically says you and your family are part of the transplant team, and it is your responsibility to call if anything changes in his condition. It breaks down responsibilities like communication. And this part is huge. You need to be able to be reached. And that call can show up on an unknown or blocked number. So your phone needs to accept all calls. And I cannot stress this enough. You need to answer every single one of those calls. You can receive the call at any time, day or night. You must be able to arrive within the time frame given. So when people say waiting, what they mean is being ready at all times. Now let's talk about infection prevention and why we became obsessed. Now this is the part that matters because the education book is clear before transplant, it's extremely important to keep your kid as healthy as possible. It explains that not telling the team about an illness can be life threatening, It gives practical guidelines like don't eat or drink after other people wear masks in crowds. Hand sanitizer frequent hand washing keep your hands away from your face. Keep sick visitors away. So yes, we became that family, but we were always like that, so really wasn't much of a change. We were the ones who wore masks in crowds. We avoided crowds in general. the ones who said don't visit when anyone had a sniffle. Not because we wanted to be difficult, but because status seven is real Another thing the education book drills into you is medication adherence. It explains that medications are essential to transplant success. They must be taken as directed at the same time every day. It also emphasizes new medications, including over-the-counter meds or herbal supplements are not to be given without transplant team approval. This is why I keep repeating you run everything through the team even when your child is waiting even more after transplant. Now let's go back to our routine, because this is where Ryders story gets personal. We didn't call it P.T. we call it lung therapy because for Ryder, every moment was about breath. The education book explains that It's important to maintain or improve physical condition and stamina. And PT/OT are used for body conditioning in preparation for transplant. And it lists ways PT can help, like assessing strength and endurance and helping maintain mobility and an active lifestyle. So here's what I want you to understand. This isn't about fitness. This is about survival through transplant. Some kids come into transplant deconditioned. They are so weak that the team requires weeks or months of PT before approval, because they have to know the body can withstand the surgery and recovery. The good news for Ryder is that he had been doing lung therapy for years, so he already had that foundation. But as his oxygen needs climbed and we were talking up to seven liters, even a conditioned kid can't out muscle failing lungs and still he showed up. He did the work. Then there was occupational therapy. Ryder loved Miss Brittany, but Ryder hated OT because OT is functional and in his mind it felt insulting. He would say things like mom, why am I doing this? I know how to do these things and I get it. Because OT isn't teaching you how to brush your teeth, it's teaching you how to brush your teeth without losing all your air. The education book describes OT as supporting daily living activities things like showering, dressing and brushing your teeth. So Ryder, he would get winded taking a shower. He'd be gasping when he was brushing his teeth. So OT worked on conserving energy, strengthening his hands and fine motor skills. Functional endurance. And here's the part parents need to hear. The point is to keep them strong enough so that when they wake up with new lungs, their body can participate in recovery. Can you travel while waiting? The answer is always ask first. The book says to always consult the transplant team before planning travel, because depending on where you're going, the candidates listing may be placed on hold during the trip. So it's not always. No, but it's never. Do whatever you want. It's ask first. Plan with them. Now let's talk about the mental part, because the psychological weight of being listed is heavy. You carry your phone like it's attached to your nervous system. Every unknown number makes your stomach drop, and you never fully relax because you're scared to miss the call. But you're also scared of getting sick and being made inactive. And this is the part that feels like living in a suspended reality. You're trying to keep your child strong, but you're watching them struggle. You're pushing them to walk, but you're watching their lips change color. You're checking the pulse ox. You're doing math constantly. And on top of that, you're trying to parent. You're trying to keep them laughing. You're trying to keep them from feeling like they're just a patient. If you're listening and you're in this stage, I want to say this clearly. You're not overreacting. This is high alert life. You're allowed to take it seriously. You are allowed to protect your child. You are allowed to ask too many questions. You're allowed to message my chart again and again. You're allowed to be the squeaky wheel. Because in transplant, the squeaky wheel is often just a parent who refuses to miss something important. So we kept the routine. We went to clinic. We did lung therapy. We did OT. We tracked the numbers. We watched fev1. We did labs and we did labs again. We lived by the transplant education book and we lived by my chart. And we tried so hard to make project Joy and Hope feel like a life, not just a waiting room. Ryder fought every inch of strength in those sessions. He didn't know it then, but every weight he lifted, every hallway he walked, every moment he showed up. It was a deposit into a bank account he was going to need to withdraw from very, very soon because the call comes. And when it comes, your whole world changes in one breath. Next time we talk about the weight of the silence, and then we talk about the call, the moment the runway ends and the flight begins. I'm Courtney, and if you can take a deep breath for Ryder today, he worked really hard for this