Kerry's Story Part 2: The Invisible Scars

Summary

The Medical Detectives: Episode Summary - "Kerry's Story Part 2: The Invisible Scars"

Podcast Information:

• Title: The Medical Detectives
• Hosts: Dr. Erin Nance (Orthopedic Surgeon) and Anna O’Brien (Content Creator)
• Episode: "Kerry's Story Part 2: The Invisible Scars"
• Release Date: June 18, 2025

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Introduction

In the second part of "Kerry's Story," listeners delve deeper into Carrie Kerry's harrowing journey battling idiopathic pulmonary fibrosis (IPF). This episode continues to unravel the complexities of her medical struggles, the emotional toll of organ transplantation, and the profound impact of organ donation on her life.

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Recap of Carrie's Initial Diagnosis

Timestamp [00:20]
Molly: "We met Carrie, who was an extremely active individual, was very into hockey, and then suddenly lost the ability to breathe well..."

Carrie Kerry, once a vibrant hockey enthusiast, faced an unexpected decline in her respiratory health. Previously diagnosed with IPF, a condition characterized by scarring of the alveoli in the lungs, Carrie's lung capacity plummeted, necessitating supplemental oxygen to sustain her daily activities.

Timestamp [00:51]
Erin: "The diagnosis is idiopathic pulmonary fibrosis, which means that the outer lining of the alveoli, which are the breathing sacs, are filled with scar tissue."

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The Struggle with Oxygen Dependency

Timestamp [01:27] - [04:22]
Carrie's condition worsened over time, leading her to rely increasingly on oxygen devices. She describes the physical and emotional challenges of managing bulky oxygen tanks, the fear of depleting her oxygen supply, and the frustrating lack of improvement despite medical interventions.

Notable Quote:
Carrie: "My memory lapses were huge... anything that is getting in is not diffusing through my blood system to the other parts of my body."
[02:58]

Erin adds medical insight, explaining how IPF affects the body beyond the lungs, impacting extremities and leading to symptoms like cold hands and feet—a phenomenon similar to sepsis.

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Facing the Reality of a Transplant

Timestamp [04:27] - [12:25]
Carrie comes to terms with the stark reality that a lung transplant may be her only option for survival. Initially fearful and unwilling to discuss transplantation, she eventually confronts the necessity of the procedure. She and her husband meticulously research potential transplant centers, ultimately choosing Indianapolis over St. Louis to stay close to her support system.

Notable Quote:
Carrie: "It was life or death. And I remember somebody even asking my sister in law, how did Carrie decide on transplant? And she was like, because she wanted to live."
[11:28]

Carrie undergoes an exhaustive evaluation process to qualify for the transplant list, including social, psychological, and financial assessments. Her determination is evident as she navigates the complexities of becoming a transplant candidate.

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The Miracle of Transplantation

Timestamp [12:27] - [19:13]
After nine months on the waiting list, Carrie receives the life-saving news. She describes the emotional moment of receiving her new lungs and the immediate improvement in her quality of life. The first breath with donor lungs was both physically revitalizing and emotionally overwhelming, bringing a sense of being a "walking miracle."

Notable Quote:
Carrie: "I am a walking miracle. I am a medical miracle. I am here because the doctors were skilled and the surgeons were skilled, and because my donor said yes."
[13:57]

Carrie shares the joy of returning to activities she once loved, such as playing hockey, and the profound gratitude she feels towards her donor and the medical team.

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Emotional Impact and Organ Donation Connection

Timestamp [19:19] - [29:16]
Carrie pens a heartfelt letter to her donor’s family, expressing profound gratitude and the transformative impact of their generosity. She details her emotional struggles, including survivor's guilt and the challenge of conveying her feelings to the donor's family.

Notable Quote:
Carrie: "Every single Time I'm able to do something I wasn't able to do before, I am amazed. I just pause and take time to appreciate each and every moment."
[17:11]

The connection with her donor's family brings closure and a sense of shared humanity, emphasizing the importance of organ donation.

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Rejection and the Ongoing Battle

Timestamp [29:16] - [47:09]
Carrie's triumphant story takes a sobering turn as she experiences organ rejection nearly a decade later. The episode chronicles her second transplant, marked by acute rejection episodes and the emotional trauma of fearing she might "kill her donor's legacy." She navigates the grueling process of evaluation for a second transplant, facing renewed anxiety and a more precarious health state.

Notable Quote:
Carrie: "I thought, how dare you? How dare you? I was 49. I was really pissed off when my mom died at 69, thinking, that's terrible."
[40:03]

Despite the challenges, Carrie remains resolute, undergoing a second transplant and reflecting on the relentless nature of her condition and the resilience required to continue fighting.

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Mental Health and Life After Transplant

Timestamp [47:09] - [58:44]
The episode delves into the profound mental health struggles Carrie faces alongside her physical health battles. The anxiety of potential rejection, the loss of physical activities that defined her identity, and the emotional burden of knowing her time might be limited weigh heavily on her.

Notable Quotes:
Molly: "I have a lot of respect for organ recipients, because that is an emotional burden I don't think I could take."
[58:13]
Carrie: "They put you among the holy trinity of immunosuppression, cellcept and prograft and prednisone."
[17:50]

Carrie emphasizes the crucial role of a strong support system and maintaining hope despite the ever-present challenges.

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Advocacy and Awareness

Timestamp [58:44] - [55:01]
Carrie transitions from sharing her personal story to advocating for organ donation. She highlights the importance of education, dispelling myths, and the profound impact that becoming an organ donor can have on saving lives.

Notable Quote:
Carrie: "The gene is to save someone? Yeah, that's the one thing that they didn't kind of... I've gone on to do lots and lots and lots of education about organ donation."
[57:45]

Her advocacy work includes fundraising, volunteering, and speaking engagements aimed at increasing organ donation awareness and registration.

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Conclusion and Reflections

Timestamp [55:01] - End
Dr. Erin Nance and Anna O’Brien reflect on Carrie's incredible journey, the emotional and physical toll of multiple transplants, and the unwavering spirit required to endure such trials. They emphasize the critical importance of organ donation and the need for greater public awareness and education.

Notable Quotes:
Erin: "The most powerful drug is hope. But that people are the best medicine."
[51:06]

Molly: "I've been like, oh, yeah, when you're like, didn't you want to call that doctor and say you missed it?"
[54:40]

Carrie's story serves as a poignant reminder of the life-saving potential of organ donation and the ongoing challenges faced by recipients.

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Key Takeaways

1. Idiopathic Pulmonary Fibrosis (IPF): A severe lung condition leading to scarring and reduced respiratory function.
2. Organ Transplantation: A lifeline for patients with end-stage organ failure, but fraught with challenges including rejection and the need for lifelong immunosuppression.
3. Emotional Resilience: Coping with chronic illness and organ transplantation requires immense emotional strength and a robust support system.
4. Advocacy Importance: Educating the public about organ donation can save lives and honor the generosity of donors and their families.
5. Mental Health: The constant fear of rejection and the loss of physical abilities can significantly impact mental well-being, necessitating comprehensive support for recipients.

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Quotes Highlight

• Carrie on Rejection: "After almost 10 years, I went into rejection... And after, I was like, we had great outcomes. I am incredibly compliant patient."
  [29:30]

• Molly on Organ Donation Awareness: "I've been like, oh, yeah, when you're like, didn't you want to call that doctor and say you missed it?"
  [54:40]

• Erin's Reflection on Hope: "The most powerful drug is hope. But that people are the best medicine."
  [51:06]

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Final Thoughts

Carrie Kerry's story is a testament to the human spirit's resilience in the face of life-threatening medical conditions. Her experiences underscore the vital importance of organ donation and the profound ways it can transform lives. "Kerry's Story Part 2: The Invisible Scars" not only educates listeners about the medical intricacies of lung transplantation but also offers a deeply moving portrayal of the emotional journey that accompanies such a life-altering process.

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If you found this summary insightful, consider listening to "The Medical Detectives" to explore more gripping medical mysteries and real-life detective stories from the healthcare frontline.

Transcript

[Molly]

Welcome back to part two. It's the first two part episode, isn't it?

[Erin]

That's right, it is. Look at us, keeping everybody in suspense.

[Molly]

For an entire week, changing things up. Well, I feel like we need to give you guys a little bit of update of what's happened so far. In case you're just listening for the first time to this story, we met Carrie, who was an extremely active individual, was very into hockey, and then suddenly lost the ability to breathe well, which eventually led to her losing a lot of her lung capacity and ending up on oxygen. And Erin, what was her diagnosis at the time we ended the episode?

[Erin]

So the diagnosis is idiopathic pulmonary fibrosis, which means that the outer lining of the alveoli, which are the breathing sacs, are filled with scar tissue.

[Molly]

So this has reduced her lung capacity very, very low. Pregnancy has not made things easier. But as we ended last week's episode and I called out, she's not currently wearing an oxygen device. Which leads us to now where the story takes a surprising turn.

[Erin]

Yes, we actually thought it was over, but it is not over.

[Molly]

It is not over. There is so much more and you're going to start the episode and think it's over again, it's not. This was a whirly tour of health and I think that's why it deserved two parts. So with that, let's just jump right into part two of Carrie's story. I just want to point out something. You're not on oxygen.

[Carrie]

Now, there's a long story after this incredibly long wind up. So at this point, I am on oxygen and I've quit hockey, but I'm not improving. I'm just getting worse and worse. And so I'm needing more and more oxygen. I start out with a little concentrator, then I go to oxygen tanks. I'm wheeling around the four foot tall, whatever oxygen tanks you have to calculate when you leave the house. How long am I going to be gone? How long is this going to last for? Do I have it on continuous or pulse flow? And boy, the panic if you run out. I remember being at the zoo and having to sit down and my husband ran back out to the car and grabbed the other oxygen tank and running back in and it was crazy. But my diffusion, the pulmonologist that I saw for all those years, he explained, Kerry, we could pump in 20 liters of oxygen, but my diffusion had dropped so much by that time that he said, it's like putting your hose up to a brick wall. It ain't going Nowhere. And so now because of the low diffusion, my feet are cold, my hands are cold all the time. I would get sleepy. I have always had an incredible memory. I would forget. My memory lapses were huge. I mean, I'm somebody you don't want to argue with because I will remember everything you've ever said and I will tell you exactly how you said it and I'll tell you what meal you're eating while you said that. I remember everything. And so when I start forgetting stuff, it's really noticeable. And so because of the low diffusion, but my oxygen is not getting in there. And then sure as heck, anything that is getting in is not diffusing through my blood system to the other parts of my body.

[Erin]

And this is what our previous guest who had the sepsis. Right. It's those extremities you're trying to protect your central core functions. And there's another. If you put your hands up to the camera, do you have.

[Carrie]

I don't think so, but my doctors did say that they thought I had the beginnings of some of it.

[Erin]

So for those. Because we're on a podcast and you cannot see, but there is a characteristic to the fingertips of people who have long standing pulmonary disease where the tip of your finger looks like a club.

[Carrie]

Or like a bullet starts to curve and the nail beds change color, they get bluish and you get ridges.

[Erin]

So you're going through some multi system early failures.

[Carrie]

Yeah. So things are getting worse. And I start to come to terms with the fact that transplant is really my only option. When my doctor initially diagnosed me, he tried to bring up transplant because that is realistically, since there is no treatment in no cure, if you're not stable, if it does progress, if you do go downhill, then that is your only course of treatment. And that was terrifying to me. And I remember absolutely cutting him off. Nope, nope, nope, don't. We don't need to talk about that now. And we didn't for years until I went back to him and said, I know I need to stop doing some of these activities and I need to go on oxygen and, and we need to talk about transplant. It was just terrifying. I didn't ever know anybody who had had a transplant who had needed to transplant. I knew nobody in the transplant community in any way, shape or form. And even in support groups where I had gone in the meantime. I remember there being kind of an attitude of, well, you're just trading one set of issues for another. But when I went back to my doctor to talk about transplant, it's because that was my only option. If I could have lived how I was living, even on oxygen, as much as that sucked, I would have. If I could have not risked my life with transplant, I would have lived. But it was not an option. It was life or death. And I remember somebody even asking my sister in law, well, how did Carrie decide on transplant? And she was like, because she wanted to live. It was as simple as that at that point. But before that, I didn't want to hear about it. And once I was really looking into it, it was a lot to mentally deal with. It was hard to think about someone else dying. It was hard to mentally emotionally handle that. And then I just, I didn't ever know when it would be the right time. I felt like, how on earth do you know when it's the right time? When it is the time that you can look your kids in the eye and not know if you'd see them on the other side of that surgery. But we obviously waited as long as possible because my lungs were in terrible condition and all of the pathology showed that. So I had to go back to him. And he had a cystic fibrosis patient that he had referred to a hospital and he suggested that hospital. And it was in St. Louis. And so my husband and I, both numbers nerds. I was an econ major and he got his degree in accounting. We are numbers people. So we print off the statistics nationwide because like I said, I live in the middle of the country now. I'm from the west coast, my parents from the east coast. I would go wherever to have the best health, best possible chance. Again, control what I can control. So we pull up stats nationwide and we are combing through these things and we find that the hospital in Indianapolis is 1 percentage point survival rate less than St. Louis. And St. Louis, I would have to relocate. I got two young kids and all my support system is here. And I thought to be alone and dying or to be able to live my day to day life with all of my support and have them all around, that's at least worth 1 percentage point. And I chose Indianapolis. So I go to an appointment with them, an initial consult, and I really think again, presenting relatively healthy and functioning relatively high level, considering I think that they were like, this woman doesn't have ipf. I really think that they were like, then they go through to do evaluation for transplant. It is grueling. It is three days in the hospital. You stay in a hotel connected to the hospital. You're doing stuff for three days straight. And they test everything under the sun. They want to make sure there's no other comorbidity factors. So if you're going to die from something else, they're not going to give you new lungs. And if they're going to give you lungs, they're going to make sure that they're going to a good place with the best chance of survival. So every medical test, every blood test, every. Everything is done.

[Molly]

I have a question for you. At this point, when you're being tested for everything, is this just to get on the waiting list or had you been on the waiting. Okay, so this is literally just to be on the list.

[Carrie]

And you go through a social evaluation, a psychological evaluation, financial evaluation. So psychological, can I handle it? Social, Do I have the support system to go through this? Financial. Can I afford it? Do I have insurance to cover it? That sort of thing then.

[Molly]

And you probably need extra care beyond traditional hospital.

[Carrie]

I know people who have not gotten listed because they didn't have the social support. They, they were like, look, I've got a friend who will bring me to appointments. They couldn't demonstrate to the satisfaction of the committees that they had the social support. And for that reason alone, he couldn't get on the list. So I'm going through the evaluation and they have to take so many vials of blood every test under the sun. And the test that almost took me out was in one of your episodes. The woman talked about getting the swallowing the thing down up her nose and down her throat. I had to do that. And that was gross as can be because you are awake and swallowing it down. And I vomited on the doctor who did it. So that's what he gets. But then the 24 hour probe, the 24 hour esophageal test for GERD for reflux, that's the one that almost took me out. So it's up your nose, down your throat and you are pressing the button for whenever you eat or drink or whatever. And I can't breathe. I'm already panicky because of not being able to breathe. Then you put something up my nose. So I've got the cannula up my nose and this thing up my nose. And I, I mean, talk about. My anxiety went tenfold and I am like, I can't take it. I can't take it. I remember being in the hotel room off the hospital and my husband and I were going to go get dinner and I was like, I can't take it, Kevin. I can't take. And it was tough Love time. Like, okay, I understand. But just before you rip it out, if you do, that's the end of this. Okay? Like, that's was incredibly scary and incredibly grueling. And results came back that I am as IPF as it gets. And with the evaluation, they listed me, and this is my second wake up call after the 69% pulse oximeter reading, they listed me second in the state of Indiana. So that means one person was in more dire need of a transplant to live than me in the state of Indiana.

[Molly]

Oh, my God.

[Carrie]

So I got listed second in the state of Indiana, and I was blown away by that. I don't know what I had in my head, like 40 or something. I don't know. And so you're just waiting and waiting. And it was about nine months later, and we had just gone to a Christmas party at my husband's work. And we get home, and at the end of the night, it was 11:45, and one of the coordinators at the hospital called and said, carrie, I think we have a set of lungs for you. And I started hyperventilating. So I was like, kevin, Kevin, get up, get up. And we got the kids in the car and drove to Indianapolis. And the next day got my transplant. And the moment when I said goodbye to my kids, that huge fear that I had of saying goodbye to them didn't have any at all. I just felt completely like. I don't know. I wasn't scared at all. I wasn't, like, I was at peace with the decision. Like, hey, whatever happens, happens. I. I felt confident that everything is going to work out, but it was crazy. It was a long surgery. Of course, I only know any of this from my husband. It was a long surgery. They did a double thoracotomy. So they went in through my back. I have two semicircle curves on my back. And that's what we call them. They're my angel wings.

[Erin]

I want to ask, what did it feel like to take that first breath with. With someone else's lungs?

[Carrie]

That is heavy emotionally. It felt physically great, but it felt very heavy emotionally being again. Like, how are you ready emotionally for transplant? I was very small. And so the knowledge that I would be probably getting the lungs of a teenager, a young person, that was a terrible thought. And you have survivor guilt for sure. And it's heavy, but it also feels like a miracle. You're like, I am a walking miracle. I am a medical miracle. I am here because the doctors were skilled and the surgeons were skilled, and because my donor said yes. And everything that I could do now that I couldn't do before I stop and think, I'd be like, I can do this. I can. Wow. I wasn't able to do this, or I wasn't able to do it without a struggle. And one of the things that I was looking forward to the most was just being able to laugh. Because not being able to breathe affects everything. And one of the simplest things that was one of the greatest joys was something would be funny and you would be like, please, please, please don't make me laugh. Don't make me laugh. Don't make me laugh. Because that would put me into a coughing attack. So being able to just laugh and joke with my kids and with my husband and my friends, and it was amazing. It was amazing. And I literally, with every, you know, a step downstairs, grabbing my car keys, getting in my car and going somewhere and not having to think about oxygen, not having the soreness in my nose from it drying out from the oxygen, it affected everything. To not be able to breathe and to be able to breathe affected everything.

[Molly]

What was it like to realize how bad you actually were prior?

[Carrie]

Because now they, my doctors, when I said I didn't know when would be the right time, they said it was the right time. The lungs, they said what? They got out and they said it looked like coal. I mean, they were bricks. There was nothing pliable about them. They were nothing but scar tissue. And the prettiest picture I've ever seen still to this day. I told you, I saw all those X rays with the opacity growing, the whiteness growing. I got to see an X ray and I was like, I have ribs. I have ribs. To see clear ribs. A picture of ribs instead of white scar tissue. That's the prettiest picture I've ever seen. It's the prettiest picture I've ever seen. And I've read the pathology of the lungs that they took out, and the descriptions were like purple brown instead of nice pink healthy tissue. It was nothing but scar tissue. It was nothing but. But bricks. I mean, I was surely on my deathbed and then I was able to do everything, go to my kids, sports and travel, and we went on trips and I got to go back to California. And it was just. It was amazing and important question.

[Molly]

How long was it before you started to play hockey again?

[Carrie]

They told me I shouldn't. Oh, no. One of the things that you. In order for your body to not reject your lungs because they see them as something foreign and something they have to fight. They put you among the holy trinity of immunosuppression, cellcept and prograft and prednisone. So I'm on prednisone for the rest of my life, on steroids for the rest of my life, which affects your bone density. And they said playing a contact sport, it's probably. Probably not the best thing. So I have played since then, but only in, like, single games.

[Molly]

So do you know anything about the person you received your lungs from?

[Carrie]

I do. So it's totally private information. You would never find it out if they didn't want you to. I wrote my donor mom, and they suggested at that time to wait a year to write. So that's what I did. I waited a year, and then I sat down one night to write them a letter.

[Erin]

So. So how. How did you decide what to write in letter to the.

[Carrie]

I have my letter. I have my letter, and I'll try to get through it. And I'm only. Okay. Molly asked if I would read it, and I told her the only way that I'm saying yes is because I've already gotten her permission because I've read it before a donor recognition ceremony, and before I would do that because it was just to her. I got her permission. So, again, I don't know anything about my donor. I don't know anything about who I'm writing anything. And I submit this to Indiana Donor Network, and they transfer it to the family. And I was so lucky that. That my donor mom wrote me back. So anyways, I said, I don't think I've ever sat down to write anything that has meant so much. Oh, I'm already. My voice is already bad on the first line.

[Molly]

Don't worry. I will cry with you. I will cry with you. We will cry together. I'm already getting a tissue.

[Carrie]

I know it's coming. Because of this, I have no idea what to say, let alone where to begin. I know I need to do this, and I want to. But no matter what, I can't think of what to say to convey my thoughts. What do I tell you? Should I tell you what my life was like before I was sick? Do I tell you what happened after that? Or do I tell you how my life has changed since receiving the gift of life? This gift has given me just that life. I don't mean an improved quality or ability, but no less than life itself. I have recounted my reaction when I was first diagnosed with idiopathic pulmonary fibrosis at the age of 30, while almost seven months pregnant with my first child, I called my husband and told him I was dying. After that, I remained relatively stable for many years and incredibly high functioning for someone with my disease. It was a strange thing because honestly, I was incredibly healthy with really bad lungs. I went on to have my second child, a happy, healthy son. Sometime after that, my disease started to progress again. It happened slowly at first. Then the things I had to give up started piling up. My health was really getting in the way of my wonderful life I had with my incredibly strong and loving husband, inspiring children, and supportive extended family and friends. I did everything I could to stay as healthy as possible and not give in to this disease. I'm sure some of it was denial, but honestly, I just never would accept that I was as bad as I was. No matter what, I knew that I would do whatever I had to to be here with my family. Even though I was frustrated by my disease, I just loved my life so much. In less than a year, I went from finally accepting that I needed supplemental oxygen with a small portable machine to wheeling around 3 foot tall oxygen tanks with a backup one at the ready to get through any outing or activities with my kids. We did what we had to do and kept on living the best life. I was so scared to be facing the inevitability of transplant and still questioning when it would be the right time. As scared as I was about transplant, every single day when I struggled to breathe, I felt as though I was going to die. I hated having my picture taken with my oxygen on, yet I forced myself to take them, not knowing if it would be the last picture my kids would have of their mother. The night came when I received the call that they found lungs for me. We loaded up the family and headed to the hospital. At the moment I left my family to receive my lungs, I was not scared. I absolutely felt the strength and support of all my friends and family. You cannot possibly prepare yourself emotionally for a transplant. I cannot tell you how overwhelming the thought is that I have someone else's lungs in my body and that they breathe for me. I knew my lungs had declined greatly and that I was requiring more and more supplemental oxygen. And the doctors explained that no matter how much we pumped in, the lungs were so bad that it couldn't pass through and oxygenate my blood and body. My entire body was working so hard just to survive. There is no doubt that it was the right time because the surgeon who removed my old lungs said that they were nothing but shrivelled up scar tissue. Every single Time I'm able to do something I wasn't able to do before, I am amazed. I just pause and take time to appreciate each and every moment. I so appreciate the ability to just hop in the car to run my kids around without the struggle with oxygen tanks and the calculation for how much I'd need to bring or how long I could be. It was a tearful moment when I was again able to lift my son, climb stairs, breathe deeply in yoga, play outside with my kids without an oxygen leash, travel, take up bicycling, step back on the ice to play hockey, do just about anything. I know with each wonderful breath I take and moment I have with my family. That you are without your loved one and missing that moment. I was so happy to have this Christmas at home with my family and yet I was painfully aware that it was the anniversary of your loss. I'm sure it is a time when you cannot escape feeling the hole in your world. It was with your lust that I was able to survive. I don't know how I can tell you what that has meant to me and my family. The day of my surgery, my daughter made me a card with a picture of pretty pink new lungs this fall. Her writing project for school was titled Lungs. She tells about how I needed new lungs because my old one stopped working. She wrote about tripping over my oxygen hose and said it was not easy. She wrote mom could not do a lot of things we did. The end of the tale is that quote unquote. Now she can do everything we do. Now I think she's back to normal. I like old mom back. I was thinking that a day may come that my illness will be nothing more than a faint memory for my son. It is amazing where I am today compared with just over a year ago. As hard as it is for me to wrap my mind around the life I have because of these lungs, then I think there's no telling how many lives were blessed just as mine has been because your loved one was an organ donor. I hope I honor you and your loved one every day by living my my life to the best of my ability. Thank you. Seems so incomplete, yet really, that's all I know to say. Thank you from the bottom of my heart. Thank you for each and every day of my life. Gratefully. Carrie.

[Erin]

Oh, my God.

[Molly]

Well, if you are not crying, then.

[Carrie]

You have no soul.

[Molly]

Oh, my God.

[Carrie]

It was a really hard letter to try to figure out. What do you say? And I just. I sat here one night. I sat here one night bawling in bed and just wrote it and I got a letter back and I'm so grateful because I know a lot of people don't and that would have it. It really helped complete the puzzle. So my donor was a 19 year old man, 19 year old boy. He was active, he was a baseball player, he was a left handed pitcher. My donor mom's name is Tammy. And we wrote, we talked and we eventually met. But I remember having conversations with her because her, her boy is a big boy. He had size 13 shoe and I'm 5 foot 4. I'm this little thing and she's telling me how tall he was, how big he was. And I joke around that that's the one thing that they didn't kind of. I've gone on to do lots and lots and lots of education about organ donation. One of the things that they do is match you on size. Well, I don't know, I don't know. But they were wonderful giant lungs that, that gave me life and my survivor's guilt. I came to the best way that I could say is that he didn't die because of me, but because of the type of person that he was. I'm alive. And I found out from his mom that at 16, when he got his driver's license, they asked him if he would like to be on the organ donor registry. And he said, well, yeah, why, why wouldn't I? That's the kind of person that he was. And I think so many people were like me. When you first asked at the beginning of this conversation how I was as a teenager, I felt invincible. I don't, I don't think I would have thought about that. And here this kid was saying, well, yeah, why wouldn't I, why wouldn't I save someone? And I know that there were other organs that saved other people. Unfortunately, I'm the only person who's ever communicated with her. But she's been great for me. She loves that I would do anything to be here with my kids and that this has given me my life with my kids. And I think that I've helped her at the time when we would talk throughout the year, but, but definitely this time of year, the anniversary. And I told her one time, I know that you'll be thinking about losing him, but know that on this date at this hour is when I started breathing with his lungs and that that gave me life. And she was like, okay, replaced memory. And then when my son was at a swim meet in her city a couple years later, I told her I was coming to her area and would she like to meet. And I got to meet her and her daughter and her daughter in law. It was wonderful. It was wonderful.

[Erin]

I'm speechless. Wow. I can't.

[Carrie]

So. And I. Do you. Do you think that. That we sign off here? That I lived happily ever after?

[Molly]

I mean, that's up to you.

[Carrie]

That's not what I think.

[Molly]

You got a lot.

[Carrie]

That's not even what happened.

[Molly]

What do you mean?

[Carrie]

After almost 10 years, I went into rejection. No, I know, I know you're drained. I know you were thinking we're done, but we're not.

[Molly]

Oh my God, Carrie, I want to hug you because. Oh, I.

[Carrie]

Yeah, this seems like enough for a lifetime. It. It really does. And I had rejection, very, very common in the first three to six months. I had rejection, acute rejection in the first three to six months. And they found that by a bronchoscopy. And then about two, two and a half years out again, another round of acute rejection. So, you know, they just gotta get your immune system to calm the heck down. And so tried to treat with high dose steroids and then something called thymoglobulin, which is actually bunny blood, which is a bizarre thing. I don't know how the medical people. I don't know how you figured this stuff out, but I'm glad you did. And then the second time they did the high dose steroids, the thymoglobulin, and then they ended up having to give me. I have forgotten the name. And I even tried to find it in my paperwork and I can't find it. But it was a chemo cancer drug that they gave me. One injection into my belly and that knocked it out. So. Holy again, the medical, medical miracles keep coming. Oh, but wait. There was one more thing. In the first year, I. I woke up with incredible pain in my collarbone. Couldn't figure out what it was. Went to the er. They finally figured out I had something that was like pneumonia, a virus. Still, I don't think they ever figured it out. But it created fluid around my heart so I couldn't breathe. And I had pericarditis. So fluid around your heart. And I think you're supposed to have a couple ounces and I had a full cup or something like that. It was smothering me, so they drained it. Once it came back, they went in through the breast tissue a second time, ultrasound guided. It came back. They had to give me a pericardial window. My surgeon who gave me the transplant went in for the pericardial window and that was it. And I remember at that point looking at my husband in the hospital as I'm vomiting through all of this. I'm just in so much pain. I'm vomiting, I'm like, it didn't work. It didn't work. Oh, my God, what are we doing? And I looked at him and I said, have I not suffered enough? I remember thinking, I've surely hit my quota. I've surely hit my suffering quota. Like, what else? Well, so I again thought, you know, I wasn't going to die from this disease because I was so outside the normal textbook person that I wasn't going to die. And then, even though I'm a numbers person, I worked to get myself in the best place for the best chance of survival. But they only give you 1 year and 5 years statistics for survival rates, which is frustrating. But I was like, after my transplant, I am good. And I remember doing interviews with a newspaper and they were like, so what's the survival rate? And stuff like that. I was like, I don't think like that. If I worry about that. If I think like that, then I'm already dead. Like, I'm thinking about my death instead of my life and statistics. I used them to get me here, but I'm not going to worry about that. And I.

[Molly]

You are a freaking warrior. Because I. I am also a numbers person, but would have gone the exact opposite route. I would have been spiraling. I would have been seeing every statistic. You would have seen me in a basement with like a bunch of pictures, you know, where it has the string. And I'd be like a beautiful. There's a 38% chance I die, right?

[Carrie]

Like my dad. My dad was totally freaking out at the five year mark because that's all we had. That's all we had stats on. And I remember having a phone call with him and going, dad, I'm fine. I'm not Cinderella. My carriage is not gonna change into a pumpkin at midnight. I'm good. I'm good. And I really thought I was. I'm like, I'm gonna live till I'm 100. I told my kids that I'm gonna live long enough that I'm an annoyance to them, just like my dad was to me. He drove me insane. And I plan to drive them insane. And then my daughter's senior year of high school, all of a sudden, I'm short of breath and I'm thinking like, okay, we're having rejection again. But this time it was chronic. And I want to say my first Thought was, how am I going to tell my donor mom? Because I know that when. When your donor family, you feel as though part of your loved one is living on. So I remember saying, how am I going to tell her that I'm in rejection and I'm going to have to have another transplant? I felt like I was killing her son a second time. And I said, I've got to tell you something. And I told her that I was in rejection and that I was needing to have another transplant. And of course she was sad. But when I told her that I felt like I was killing him again, she of course completely flipped that around. And she said, no, no, I'm so sorry that his lungs aren't working for you anymore. And I had to stop her immediately, had to correct that. His lungs never failed me. My body rejected them. And so I made that very, very clear to her, that he never failed me, that my body, in a different way, my body was again attacking itself. And so that was probably the hardest part, was really thinking about that the Dunder family. Then the next part that was difficult was how fast I declined. This time it hit me. I lived with the disease for 10 years the first time. And so losing things was gradual this time, not. Not gradual, not gradual. And I lost ability to do so many things so quickly. So I was 38 when I had my first transplant. And they had told me, like, well, what if I need another one? They're like, then you'll have another one. When this happened, I was like, okay, I'm going to have to go through all this again, but I'm going to have a second transplant. And I'm going through these treatments to stop the rejection. And they really are hedging on me. I'm like, we need to go through the evaluation, you know, and they're like hedging on me. And I was like, whoa, hold up. You told me that if I needed another transplant, you would give me another transplant. And they were like, yeah, well, and it's harder because, you know, out comes second time and there's scar tissue and there's this. And I was like, never. No, no, no, we're doing another transplant. I remember one appointment saying, I don't understand why we're even having this conversation about if. And the heads of transplant had changed over the years. And the head of transplant at that point was in the end appointment. And he said, I think I talked about how dying so young. And he said, well, you've really. You've already lived two lives. And I was Furious. I thought, how dare you? How dare you? I was 49. I was really pissed off when my mom died at 69, thinking, that's terrible. That was just so young. And he wanted me to feel grateful for having lived to 49. And I am grateful, but I want more. And it was battle. It was a struggle. I was like, we had great outcomes. I am incredibly compliant patient. And you know how driven I am. I think I'm a fantastic candidate. And so went through evaluation again. And like I said, everything hit me so much harder. I was again in panic attacks, again on anxiety medication. And the first one didn't work, so then tried the second one. A shower was a white knuckle ride. Like, I was so panicked. I would talk about the work you have to do for something that should be commonplace. I'd have to get myself into the right frame of mind to go sit in my shower. And my husband would have to help me wash my hair. I got so weak. There were times where my body wouldn't work at all. I couldn't stand up. I would be sitting on the sofa and I need to go to the bathroom, and they would have to help me. Like, I'm willing my leg to move to stand up, and it just wouldn't. And so I was in a wheelchair. I was on oxygen. I was completely panicked when my husband was gonna have to leave for work. Like, impending sense of doom. I just thought, I'm gonna die, I'm gonna die. And I got listed for transplant in April of 2019, and I got the call in November. So second transplant, and I was really, really, really scared. And the second transplant was very, very different. There are positives, like, I didn't come home on high dose steroids, but I did have horrible hallucinations in the hospital.

[Molly]

Is that a common side effect of a transplant?

[Carrie]

Call it ICU psychosis, delirium. Delirium. I don't know. I didn't have anything like that. The first time I hallucinated. My kitty was in the hospital with me when I was in recovery. The first transplant. That's about the most hallucination I had this time I really, I was like, I don't know why you're not doing like you did the first time and just keeping me sedated, Like, I was sedated for an extra day and on the vent for an extra day with the first transplant, this one, they seem to. Protocols constantly change and I don't know, I really would have preferred to be unaware of life for a while because I had the vent in my throat. And then I was not getting enough oxygen. Still, they're putting me on a cpap. And I hated all of that. And I was hallucinating through all of that, and so I was ripping the CPAP off. I won't go into detail of my hallucinations, but let's just say that I have never felt anything so real in my life, not even in my real life, as that. That was more vivid, more real, more intense than anything I've ever experienced in my real life. And you couldn't convince me it wasn't real. And I was being attacked, and someone was trying to take my lungs, and so it was my job to fight them. And I kicked a nurse. I bit a nurse. I mean, it was ugly. It was ugly. And I remember my husband was like, you were so bad to that nurse. You owe him an apology. You, like, bit him. I was like, no, no, no, no, no. I was fighting for my life. Like, I. For the longest time. Like, did that happen? Did that.

[Molly]

Did that happen?

[Carrie]

I thought I was reaching out to my best friend and asking her to come rescue me out of the hospital, that they were trying to kill me. And I asked her afterwards, did you get messages from me? She's like, no, I didn't get any messages from you. I was sure of it. I was sure of it. I didn't know who I could trust. I didn't. Ah, it left some lasting trauma, for sure. And so the girl that went immediately doing everything I could for the world after the first transplant, it didn't exactly happen the second time. I'd fundraised and volunteered for Pulmonary Fibrosis Foundation, Indiana Donor Network, Kentucky Organ donor affiliates. I worked registration tables. I have talked to groups as small as a small church group, up to full auditoriums of students. I've done classrooms, elementary, middle, high school, all about education because there's so many myths about organ donation, and I loved doing it, but because I had such trauma after the second one. And then as soon as I got done with rehab from my second transplant, Covid hit. So in 2019, I just barely get back to life when Covid hits. And so then you're in isolation, and then the world. That was scary before because I could die from a common cold now because of my immunosuppression, and then trying to get people to understand how much more risk I'm at because of COVID and people not taking it seriously. I've had to make some tough decisions to say, if you don't take my life Seriously, and my health, seriously, then I can't have you as part of my life. I just. I just can't. And I don't know if it's the after effects of how hard it was to get through the second transplant. I don't know if it was the hallucinations. I don't know if it was how scary it was to be listed a second time. I don't know if it. Having had thought that, of course they would give me a second transplant if I needed it, then having to fight to get on the list. I don't know if that all built up, but. But it just. It knocked out my invincibility factor for sure. I don't have that same sense of superpower, of nothing can take me down, of, you know, I don't care about what any stats say. I'm going to live to 100. That was always my thing that people would say. I remember people talking about, oh, I wouldn't want to get that older. And I was like, I do, I do. I want to be around forever. And it's mostly because of my kids. It's because I want to be around for every single thing that they do and witness it, be a part of it. And so I do have a lot of thoughts that are darker now than I did before. And I certainly have a whole lot more nightmares and more conversations. If anything would have ever come up about mortality after my first one, I wouldn't have said anything. But now there'll be conversations where my husband will talk about something far in the future. I'm like, well, I won't be around, so. Or I'll be gone before you or when I die or, you know, it's just a hard fact that I'm going to be gone before any of my loved ones. And I hate that for them, but I really hate it for me because I just want to be around for all of it. I love them so much that I don't want to miss any of it. So I kind of feel like a cat with nine lives, and I've used up quite a few of them. I hope that I've got many more. So it's not an everyday thing, but it certainly is more of a shadow hanging over my head than it was before. But I am still hopeful and I am still fighting every day to live the most full life with the years I do have left.

[Erin]

Well, Carrie, I mean, you've taken us on this journey of over 30 years.

[Carrie]

Let's see, 27 to. I'm about to turn 55.

[Molly]

So, yeah, so about 30 years.

[Erin]

30 years. And many of our listeners are either at, like, the beginning of their misdiagnosis journey or still have not found their diagnosis. What would you tell them? As someone who's been through probably the most dramatic and scariest moments that you could possibly have, you know your body.

[Carrie]

Better than anybody else. You may not have the medical expertise. And I heard your show the other day where you're like, don't put your Google search up against my medical degree and don't put your medical against my living with this. And I see both sides of that. But, you know, when something's wrong with you, I may not have had the knowledge to figure it out. I sure as heck didn't think it was terminal. But you have to advocate. And I also do think that your attitude, it says a lot. When I went to that first pulmonary rehab, I remember seeing people. There were men in there, and, you know, men are really bad about going to the doctor themselves. And there were men who were at the pulmonary rehab. They wheeled in there by their wives, and, you know, they would not be there. Their wives didn't make them go. And I remember asking the nurses, the respiratory therapists, I'd say, so what's the deal with this guy over here? Because he seemed so worse off than me. And they're like, oh, honey, no. He's got, like, double your capacity. But he got the diagnosis and counted himself out like, I'm dead. And I was like, I'm gonna live.

[Molly]

My favorite Aaron quote of all time is the most powerful drug.

[Carrie]

Really?

[Molly]

That is my favorite quote from you.

[Carrie]

Absolutely. There are some things that are out of our hands, but I feel like, take control of the things that you can control and try everything that you know of and your attitude and your support system. I mean, I had friends drive me to rehab. I had friends drive me to Indianapolis twice a week. I had friends drive me everywhere. My support from my friends, you can't put a percentage or price or anything on that. And I was so stubborn and would not accept help when I was sick the first time around. Boy, did I accept it the second time around. And you know your friends by not the good times, but the bad times, and those are the people that are there for you, made food for. For us. Took my kids to soccer practice, drove my son to school for that whole year. Support is everything. And having a place to fall when I was on, just crazy on the steroids. And my husband and I really struggled that first year because I would go out in the world and people thought, oh, well, you've had your transplant now everything's peachy keen. And I was struggling so much with not being in control of my own mind. I'm fighting with him. And I would say you don't understand how horrible it is to not be in control of your own mind. And I need you to be the place where I can fall. I need you to be the soft landing. And I'm gonna be horrible to you, but I need you to know that and get through with me. And I get really resentful about people that see taking care of their loved ones as a burden, even though I know that it's a horrible place to be. Being a sick person is terrible. Being the person who supports them and care gives to them is probably even worse. But.

[Erin]

Well, that's the second quote from the back jacket of my book, which is the most powerful drug is hope. But that people are the best medicine. And for you, that was part of your treatment recovery plan. Are those people. And again, they don't always come in the form of the people who are necessarily there in the hospital. They're the ones making the casserole for your kids to have for dinner for that week or the ones who are driving your kids to soccer practice. And you may never even know who did that or when they did that. But again, these are because you have built a life probably of giving so much of yourself to your community and to your family. And you know, this is.

[Carrie]

Those are huge acts of love that people don't think about. And they are when you don't give it a second thought, when you say, of course I'll take you to the hospital. When's your appointment? Let's go and drive an hour and 45 minutes to Indianapolis where wait around for an eight hour treatment. Drive me home and say, yep, I'll do it next time. When without missing a beat, you drive me to rehab. Back and forth, you organize the meal train. That is all an act of love. When you take my health seriously, that is the biggest act of love. Don't give me a card. Don't give me roses. Tell me you care about me. Buy those things.

[Erin]

Carrie, thank you so much for taking the time and your energy to share this story. I know you know you do education and advocacy ongoing, but it's another thing to lay it out for the entire public to hear. So we really appreciate what you've done with sharing your story where it's.

[Carrie]

I love this show. I told Molly that it was when I was doing the Photophoresis and was going to have both arms laid up that people are like, you should really start listening to audiobooks and things like that. So I did. And through rehab afterwards, I started listening to podcasts. And podcasts really helped through Covid. And I have my earbuds in 90% of the time now, because, again, with steroids, you can't shut down. You cannot shut down your brain. So having something else, instead of a commercial that you heard two days ago going on or stress about something or thoughts of my nightmare that happened the night before that, I'm going to leave before I'm ready to leave and miss something out of my kids. The podcasts really help. They just really help. And I listen to a lot of. I'm very stereotypical. I listen to a lot of the crime shows and things like that and find that people are like, how do you find that relaxing? Well, to shut down my brain, but I listened to Dating Detectives as a complete. Just. This is something that's so light and funny. And I remember when Molly said that she thought she, you know, the medical detectives. And I remember going, I don't know about that. I've tried to watch medical mystery and medical bizarre, unknown, blah, blah, blah. And they've all been terrible. And I remember going, I don't know. And I listened to your first show, and I was like, oh, this is good. This is good. And I've listened to every single one of them, and I think you're probably my favorite right now.

[Molly]

Oh, my gosh. Thank you so much. I'm learning. So much so that I look forward.

[Carrie]

To each and every episode. And there's so many that I've been like, oh, yeah, when you're like, didn't you want to call that doctor and say you missed it? You know, big mistake, Big mistake, huge. I thought about it. Not done it, but thought about it. I have wiped the bad doctors out of my brain, and I keep the good doctors. I hold them dear.

[Molly]

This was. This was a really long journey. But I think the one thing that this episode did for me, Erin, is made me really think about organ donation. I think that when we think about it, it feels. Feels like this just like innocuous little check mark you put on your driver's license. At least in the US it's that way. And it is so much more than that. It is so much more important. And I think I'm an organ donor. But do I know if I'm an organ donor? No. I mean, I should probably check my license right now. And find out. But it's something that I didn't think about in that way. But now having met somebody who is also alive because of those donations, it's really changed my perspective to make that a priority.

[Erin]

Yeah. And I think, you know, the, the entryway to organ donation has traditionally been that driver's license appointment. And so we're asking 16 year olds, they don't even have the right to vote yet, and we're asking, asking them to make this decision often with little to no background and even listening to someone's story about the life that they were given after receiving an organ donation or if you've seen any of those tiktoks of the honor walks for the organ donors or people's stories who have been organ donor recipients. It's very emotional, but it's, I think, hard to make that decision when you don't have any context and you've never met someone who this is affected. And I think the question is, is just relying on the driver's license to be the main pathway to organ donation?

[Molly]

I almost feel like there needs to be more education. Right. I think there needs to be. People need to be made aware of it. Hopefully this episode. Episode makes people aware of it. And actually I'd be really curious for anyone listening to this if it changed your perception on organ donation. Because I feel like she brought up some really good topics that I didn't know, like just how vetted it is and how hard it is. And like there is a lot of, you know, online fodder around, like conspiracy theories around organ donation and they're just not factually even possible. And a lot of the things that people think. And so it's just made me think that it's a much more important topic. And for me, it's always just been a checkbox on a DMV appointment. And it's a lot more than that. It's a lot more than that. It's potentially someone's life.

[Erin]

Yeah. And you know something that I also really haven't had much experience is talking with someone who had an organ rejection, which is absolutely devastating to go through the process to take all of the awful immunosuppressant medications and then suffer rejection and have to go through the process again and then didn't hurt and didn't.

[Molly]

Hers happen kind of late too? Like.

[Erin]

Yes, yes. Like very late usually happens.

[Molly]

Yeah. Like that wasn't normal.

[Erin]

And so I think what also this brought to mind is the toll on your mental health that the risk of rejection at any day can take. Right. She was not in the clear 10 years out. And so that continual worry is just something that I really feel for anyone who is an organ recipient, because that's just an added stress.

[Molly]

I always thought that there was, like, a magical time where once you got past, like, a year or whatever magical date there was, that you were just fine. And learning this made me have a lot more respect for organ recipients, because that is an emotional burden I don't think I could take. I mean, maybe I could if I was in that situations, but it just seems like so much to know that every day this could be the day your body just decides, nope, not anymore. Strong woman. Very strong woman.

[Erin]

Yeah. And, you know, we. We talk a lot about the intersection of physical health and mental health. And I think probably one of the saddest parts of this was her realizing that she was no longer able to do the physical activity that brought her the most joy. Reconciling what she needed to do to protect her health, meaning, meant that she had to take a step back from some of the physical things that she loved and how that affected her mental health as well.

[Molly]

I think there's this expectation when people stop exercising that it's due to, like, laziness. And there's this. There's a weird perception on exercise that it's what you need to do to be healthy. Like, you have to do X, Y, and Z. But for certain conditions, especially like things like an organ translate, your whole world can. Can change in terms of what you're capable of and what is accessible to you. And so I can imagine for someone where being active has been such a huge part of their identity and also how they kept their own health stable, both physically and mentally, to have to take that completely out could be devastating, because then who are you? She was. She was the lady who loved hockey. Who am I without hockey? This thing that defined myself for so long, and I feel like I personally relate to this because that's. You know, before surgery, I was losing mobility, and I saw things get taken away from me, and you lose the ability to find the same joy in the day because you can't do the things that brought you joy anymore. So I related to that. I mean, obviously hers was much more extreme. And obviously, even post having the. The transplant, she's still limited. But I. I empathize with that wholly because it's. It's tough. It's tough because you're better, but in a lot of ways, you're not.

[Erin]

Well, thank you, everyone, for sticking with us for these two parts. We can't wait to bring you the next story next Wednesday.

[Molly]

So until then, and don't forget, if you like this episode, if you liked what you heard, leave us a rating, leave us a comment. It sounds silly, but it really does help us continue to make this podcast and create amazing episodes for you. So if you loved it, just let us know.

[Erin]

Yes, please share it with anyone you know who has been an organ donor or an organ donor recipient. The highest form of flattery is to share this through word of mouth.

[Carrie]

Sam.