Rejection, Recovery, and the Fight to Keep New Lungs

In Episode 8, I’m sharing what happened in the early weeks after Ryder’s bilateral lung transplant, when what looked like steady healing suddenly turned into another fight for his new lungs. After discharge, we were learning our new baseline through clinic visits, spirometry, wound checks, medications, and routine surveillance bronchoscopies. On the outside, Ryder looked stable and was breathing well. But a routine 6-week bronchoscopy revealed acute cellular rejection along with signs concerning for antibody-mediated rejection.

In this episode, I walk through what that actually looked like for our family. The shock of hearing the biopsy results, the same-day hospital admission, the placement of a pheresis catheter, and the start of plasmapheresis treatment. I also share the details that matter for other pediatric lung transplant families: how rejection can happen even when a child seems fine, why surveillance matters so much, and what treatment can involve behind the scenes.

Ryder was hospitalized from August 1 through August 10, 2024, and underwent an intense rejection treatment course that included IV steroids, IVIG, plasmapheresis, and rituximab. I talk through those treatment days, the emotional weight of returning to inpatient life so soon after transplant, and what it means to realize that transplant is not the end of the fight,  it is the beginning of protecting the gift you fought so hard to receive.

Most importantly, I share the hope in this chapter, too. After repeat bronchoscopy, Ryder’s rejection had resolved, his biopsy cleared, and his lung function began improving again. This episode is both our story and a practical look at what post-transplant rejection and recovery can really look like in pediatric lung transplant.

If you are a parent, caregiver, family member, or someone walking through this world, I hope this episode helps you feel more informed, less alone, and more prepared for the reality that healing after transplant can be both beautiful and fragile at the same time.

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.

Transcript

SPEAKER_00 0:01

Hi again, it's Courtney. Last episode, we walked out of the hospital. Ryder was breathing room air. His new lungs were working, and after everything it took to get there, it felt like we were finally stepping into the healing chapter. At the end of that episode, I told you that next we would talk about what those three months after transplant really looked like as we navigated our new baseline. Well, our new baseline turned out to be anything but simple. Because pediatric lung transplant is not a finish line. It is not a surgery, discharge, and then life just settles down. It is a new kind of vigilance, a new kind of fear, a new kind of routine built around clinic visits, spirometry, medication levels, wound checks, bronchoscopies, and constant monitoring. And one of the hardest things we learned is that a child can look stable, sound good, even seem to be thriving on the outside, while something dangerous is unfolding underneath. So in this episode, I want to take you through those first post-transplant weeks in a way that is both personal and practical. I want to tell you what happened to Ryder, but I also want to tell you what it taught us. Because if you are another transplant family listening to this, these are the kind of details that matter. These are the things I wish more people explained plainly. Ryder's transplant was on June 19th, 2024. That part of the story was the miracle. But once we left the hospital, we entered the part of transplant that families really have to learn to live inside. One of the biggest things to understand after lung transplant is that the follow-up is intense for a reason. It is not overkill. It is not just the hospital being extra cautious. It is because the transplant team is watching for problems before they become obvious. And sometimes the earliest warning signs do not come from symptoms, they come from routine surveillance. On July 2nd, 2024, Ryder had his two-week surveillance bronchoscopy. The biopsy was red, which meant there was no acute rejection seen at that time. But the notes also said there was a strong and diffuse C4D deposition. That is one of those details families may hear and not fully understand at first. It mattered because it suggested there could be antibody-related activity happening, even if classic acute rejection was not yet showing up on biopsy. Then on July 11th, we had a clinic visit that gave us a real reason to feel hopeful. Ryder was doing well. He had good energy, good activity, no fever, no malaise, no major respiratory complaints, and his spirometry was improving. His FEV1 was 1.40 liters, or 82% predicted. Now, before transplant, on June 13th, his FEV1 had been 0.34 liters, or 20% predicted. Now that is not just a number, that is proof of what those lungs were doing for him. On that same day, July 11th, he also had a post-op wound check. His sutures were removed, his clamshell incision was healing well. There was no drainage, no major redness, no wound breakdown. The team reviewed the recovery restrictions, including activity precautions and no backpacks for 12 weeks after surgery. That is another detail families need to hear. Recovery is not just about breathing better. It is also about protecting the surgical healing, respecting movement restrictions, and understanding that these big milestones come with practical limits. So by mid-July, we were doing what a lot of transplant families do in those early weeks. We were learning the medications, we were tracking vitals, we were showing up for clinic, we were matching numbers, and we were trying to believe that this new life might actually settle into something manageable. Then came July 30th, 2024. That day, Ryder went in for his routine six-week surveillance bronchoscopy. And this part is so important for other families listening because he looked okay. He was not gasping for air. He was not invisible to stress. He denied cough, congestion, chest pain, and fever. The broncoscopy report even described the right and left ananostomies as patent and healed, with pink mucus and no major abnormalities seen. But the biopsy told a completely different story. The pathology from the six-week bronchoscopy showed A2 acute cellular rejection, B1 focal small airway inflammation, and findings concerning for antibody-mediated rejection. In simple terms, while he looked stable on the outside, his immune system was attacking the lungs on the inside. That is one of the biggest lessons transplant taught us. A child can look okay and still be in rejection. That is why surveillance bronchoscopies matter so much. They are not optional fluff. They are one of the ways transplant teams catch problems before the family would necessarily know something was wrong. So on August 1st, 2024, we went to clinic to review those biopsy results. And that changed the whole chapter. Even then, Ryder still looked very good. He denied cough, congestion, chest pain, and any shortness of breath. His energy was great, he was taking his meds, his oxygen saturations were strong, but the biopsy was clear enough that the transplant team told us he needed to be admitted that same day for treatment. The plan included high dose IV and methylprednisone for three days, IV Ig, and further treatment for possible antibody-mediated rejection, including discussion of TPE, which is also called plasmapharesis. This is one of those moments in transplant where the emotional whiplash is hard to explain unless you have lived it. You go into a visit thinking you're doing a follow-up, and suddenly you're being admitted. You go from talking about progress to talking about rejection. You go from relief to fear in one conversation. And that is part of why I want to tell this story with detail, because families deserve to know that this can happen. It does not mean something was missed by the parent. It doesn't mean the child necessarily looks sick. Sometimes rejection is found because the team is doing exactly what they are supposed to do. On August 2nd, 2024, Ryder went to interventional radiology for placement of a phoresis catheter in his neck so plasmaporesis could begin. That was a hard day. Because there is something especially brutal about saying your child need yet another line placed, yet another procedure, yet another level of intervention after you thought you had made it through the worst. And for families who are newer to this world, plasmaphoresis is a treatment where blood is processed so the plasma can be removed and replaced, with the goal of getting rid of harmful antibodies that may be contributing to his rejection. It's not a quick pill, it's not a simple infusion, it is a serious treatment, and it requires serious access. So August 2nd was the day the rejection became visible in a new way, not just on a pathology report, but in the line in his neck, the hospital room, and the realization that the lungs that had saved his life now needed to be defended. Ryder remained hospitalized from August 1st through August 10th, 2024 for treatment of A2 acute rejection and antibody-mediated rejection. During the inpatient stay, he received three doses of IV methylpredenazone, five plasmapheresis treatments, rituximab, and two doses of IVIG. Those plasmapheresis treatments happened on August 3rd, 5th, 6th, 8th, and 9th. And I want to pause here because this is kind of a detail that matters for other families. Sometimes when people hear they treated the rejection, it sounds like one medicine, one day, and then it's done. But in our case, treatment meant an urgent admission, a Catherine R's neck, five separate plasmaphoresis treatments, high dosteroids, ritux map, IVAG, and days of inpatient monitoring. That is the reality behind the phrase rejection treatment. It's intense, it's exhausting, and it's scary. It's also incredibly coordinated. There are transplant teams, renal teams, interventional radiology, nursing, medication, labs, timing. All that has to come together fast. I think one of the hardest things for us is that stretch was realizing that transplant did not end the fight. It changed the fight. Before transplant, we were fighting to get Ryder to transplant. After transplant, we were fighting to protect what transplant had given him. And emotionally, that's a hard thing to hold. Because when your child finally gets the lungs, there is this natural hope that maybe now life will just open up. Maybe now the fear will settle. Maybe now you can breathe. But post-transplant life has its own kind of fear, a quieter fear, a fear built on lab trends, bronchoscopy results, pathology reports, medications, watching for things you can't always see with your own eyes. And that is why I want this episode to help other families, not just emotionally, but practically. If your team is doing surveillance bronchoscopies, routine pulmonary function tests, frequent labs, and close clinic follow-ups, that's not because they expect the worst. It's because that is how they protect a transplant. After all the treatment, the next question was the one every family waits on. Did it work? So on August 20th, 2024, Ryder had a repeat bronchoscopy after the rejection treatment course. And this biopsy showed A0, B0, C0, and negative C4D staining. That meant there was no evidence of ongoing acute cellular rejection, no significant airway inflammation, and the concerning antibody-mediated pitcher had resolved too. Then on August 22nd, 2024, at his follow-up clinic visit, the transplant team documented what we have been desperate to hear. Ryder was doing well. He had no respiratory complaints, his energy was great, his pulmonary function tests were trending upward again. The notes specifically said that the repeat bronchoscopy demonstrated full resolution of rejection with C4D now negative, and that his spiromy was improving after treatment. His FEV1 on August 22nd was 1.51 liters, or 90% predicted, improving again after treatment. That was the payoff after all the fear. The treatment had worked. So if I could pause the story right here and speak directly to another PDI lung transplant parent, I would say this. First, your child can look okay and still have rejection. That is not you missing something. Sometimes the only reason it is caught is because the transplant team is doing routine surveillance exactly the way they should. Second, rejection treatment may be a lot more involved than people on the outside realize. In Ryder's case, immense steroids, IVIG, and net catheter, plasmaphoresis treatments, retuxamab, and a long inpatient stay. And third, there can still be hope in the middle of all that. Rejection is terrifying, but it can respond to treatment. Ryder's did. His repeat biopsy cleared, his C4D turned negative, and his spiromity improved. That does not erase how hard it was, but it does matter. So episode eight is not just a story about rejection. It's a story about what post-transplant life really looks like when you're living in from the inside. It's a story about how healing can be real and fragile at the same time. It's a story about how a routine bronchoscopy can reveal a battle you did not know was happening. It's a story about catheters, steroids, and intense waiting for all the labs. But it's also a story about why this system of monitoring exists. Because in Ryder's case, the rejection was found, treated, and resolved. And if there is one thing I want other families to take away from this episode, is that transplant is rarely a straight line. It's medicine, vigilance, fear, resilience, and hope all braided together. And sometimes the hardest chapters are the ones that teach you just how much this new life is worth fighting for. Ryder was not just learning to live with new lungs, he was learning how to keep them. And we are learning that with him, one clinic visit, one procedure, and one hard earned breath at a time. This is Corey. And I'm really glad you're here.