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

Episode Date: June 18, 2025

This episode is the finale of our very first two-part case. Kerry was a fearless hockey player who felt invincible when her cough started, but what began as a minor inconvenience spiraled into a terminal diagnosis. Tune in, stay hopeful, and get ready to come back next week for part two—you won’t believe where this rabbit hole goes.Interested in becoming an organ donor? Click here! Have a medical journey to share? Email us at [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Welcome back to part two. It's the first two part episode, isn't it? That's right. It is. Look at us changing. Keeping everybody in suspense 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 the 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? 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. 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. Yes, we actually thought it was over, but it is not over. 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 the part two of Carrie's story.

I just want to point out something. You're not on oxygen right now. There's a long story after this incredibly long windup. 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 that 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 gonna be gone? How long is this gonna 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. 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, Carrie, 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've always had an incredible memory. I would forget my memory lapses were huge. I mean, I'm somebody you don't wanna 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 were eating while you said that. I remember everything.

And so when I start forgetting stuff, it's really noticeable. And so when I start forgetting stuff, it's really noticeable. And so because of the low diffusion, 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. 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 hand up to the camera, do you have clubbing?

I don't think so. But my doctors did say that they thought I had the beginnings of some of it. 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 or like a bowl. It starts to curve and the nail beds change color.

They get bluish and you get ridges. So you're going through some multi-system early failures. 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 new 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 we need to talk about transplant. It was just terrifying. I didn't ever know anybody who had had a transplant, who had needed your 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, uh, cause 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. Cause 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, the 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 one 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 one 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. 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. 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- And you probably need extra care that's beyond traditional housing. I know people who have not gotten listed because they didn't have the social support. 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 it. 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 it. It was incredibly scary and incredibly grueling and results came back that I am as IPF as it gets. And results came back that I am as IPF as it gets. And with 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. Oh my God. of a transplant to live than me in the state of Indiana. Oh my God. 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 felt confident that everything is gonna 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. Harry, I want to ask, what did it feel like to take that first breath with someone else's lungs? 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 stopped 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. Cause 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, 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 What was it like to realize? How bad you actually were prior because now the my doctors when I said I didn't know when would be the right time They said it was the right time the 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, oh, 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 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, how long was it before you started to play hockey again? 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, cell sept and prograph and prenezone. So I'm on prenezone 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 not the best thing.

So I have played since then, but only in like single games. So do you know anything about the person you received your lungs from? 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.

So how did you decide what to write in that letter to the donor family? 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 read it before a donor recognition ceremony. And before I would do that,

cause 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 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. Ooh, I'm already, my voice is already bad on the first line. Don't worry. I will cry with you. I will cry with you. We will

cry together. I'm already getting the tissue. 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 three 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 possible.

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 in 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 shriveled 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 out. 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 whole in your world. It was with your loss 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 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. Oh my God. If you are not crying. Then you have no soul.

Oh my God. 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 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 boy is a big boy. He had size 13 shoe, and I'm five foot four.

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 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 Oregon owner 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 and you, 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 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 of 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. I'm speechless. Wow. I can't believe it. So, Anna, do you think that we sign off here that I lived happily ever after? I mean, that's up to you. That's not what. I think you got a lot more to do.

But that's not even what happened. What do you mean? After almost 10 years, I went into rejection. I know you're drained. I know you were thinking we're done, but we're not. Oh my God. Carrie, I want to hug you because oh, yeah, this seems like enough for a lifetime. 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. And then again, another round of acute rejection. So, you know, they just got to 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, a cancer drug that they gave me one injection into my belly and that knocked it out. So whole 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 gonna 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 one year and five 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 gonna worry about them. And I- You are a fricking 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, there's a 38% chance I die. Right? Like I don't know. My dad was totally freaking out at the five year mark

cause 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 going to change into a pumpkin at midnight. I'm good.

I'm good. And I really thought it was. I'm like, I'm going to live till I'm 100. I told my kids that I'm going to 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 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 as I could die. 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 donor 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 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 need another transplant, you would give me another transplant and they were like, yeah, well, blah, blah, blah. And it's harder because, you know, outcomes second time and there's

scar tissue and there's this and I was like, no, no, no, blah, and it's harder because, you know, I'll come second time and there's scar tissue and there's this, and I was like, no, no, no, 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'd talked about how dying is so young.

And he said, well, 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 a 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 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 going to have to leave for work, like in pending sense of doom, I just thought I'm going to die.

I'm going to 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 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 is that a common side effect of a transplant? Call it ICU psychosis, delirium. Delirium. Yeah.

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 seemed 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 there 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, did that happen? Did that happen? I thought I was reaching out to my best friend and asking her to come rescue me at 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, oh, could trust. I didn't. Oh, 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 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 old. 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 for in the future. I'm like, well, I won'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 we're all 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 them 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. Well, Carrie, I mean, you've taken us on this journey of over 30 years. Let's see, 27 to I'm about to turn 55. So, yeah. So about 30 years. About 30 years.

And many of our listeners are either at like the beginning So, yeah. So about 30 years. About 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 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 if 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 going to live. Oh, my favorite Aaron quote of all time is, the most powerful drug is hope.

That is my favorite quote from you. 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 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 a 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 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 meet the soft landing and I'm going to 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 one 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. them is probably even worse. But. Well, that 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. Um, 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 the reward and return. 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 they'll take you to the hospital. When's your appointment? Let's go and drive an hour and 45 minutes to Indianapolis. 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 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 by those things.

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. I love the show. I told Molly that it was when I was doing the photophoresis

and was gonna have both arms laid up that people were like, you should really start listening to audio books 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 listened 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 Det 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. Oh my gosh, thank you so much. I'm looking forward 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've 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. 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 like this just like innocuous little checkmark 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 alive because of those donations, it's really changed my perspective to make that a priority. Yeah, and I think 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 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 contacts

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? I almost feel like there needs to be more education, right? I think people need to be made aware of it. Hopefully, this 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. 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- And didn't hers happen kind of late too? Yes, yes, very late. It usually happens like two- It's 10 years.

Yeah, like that wasn't normal. 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. 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 situation, 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. And, you know, 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 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. I think there's this expectation when people stop exercising that it's due to laziness.

There's a weird perception on exercise that it's what you need to do to be healthy. You have to do X, Y, and Z. But for certain conditions, especially things like an organ transplant, your whole world 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 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 as, 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 transplant, she's still limited. But I empathize with that wholly because it's tough. It's tough because you're better but in a lot of ways you're not. Well, thank you, everyone, for sticking with us for these two parts. We can't wait to bring you the next story next Wednesday.

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. 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.