← The Medical Detectives
Loading summary
Transcript131 lines
- [00:09]
Erin
Hello, Erin.
- [00:10]
Carrie
Hi.
- [00:12]
Erin
Before we get into this episode, if you guys did not know, Erin's book officially came out yesterday. So, Erin, I have taken a quote from your book before we even get into this episode because I feel like you need to know about this quote. So it's on the back of her book, I believe, and it says something like, the best drug is hope. I might have paraphrased that wrong.
- [00:30]
Host
Yes.
- [00:30]
Erin
Or hope is the best drug, or something like that.
- [00:33]
Host
The most powerful drug is hope.
- [00:35]
Erin
Yes. Okay. That I actually have written in the notes section of my phone. This is true. And some days I get frustrated with my body. I think we all do. And I think about that because if I sit in that frustration and I'm mad at my body and upset and I lose sight of the future because I'm focused on the now, I am only doing myself a disservice. So I wanted to tell you that that is 100% true. And it is, I think, a great phrase for any of you that are looking for something to remind you why to not get caught in the doldrums. Overall, your book is a lot of that. But that specifically is something that I have personally taken into practice because it's really easy to get frustrated right now. It's been really easy to get frustrated with my progress.
- [01:23]
Host
I mean, you know, part. Part of why I even wrote this book was to show people the examples of hope. And that hope can take so many different forms. And obviously the main story is my brother in his accident and how he never gave up hope, even when he was completely paralyzed from the neck down, he still believes to this day that he will be 100% curious. And to be honest, there's no reason to not believe that. And that's what keeps him going. That's what keeps my family going. And even as we get into this episode where we are talking to someone who has something that starts out as super benign, that happens to pretty much every person on this planet, to where she ends up. This. Guys, this story is. Is so wild. It is our first two part story. We had to break it up because that's so crazy.
- [02:26]
Erin
I mean, this story, when we get to the end of this episode, I literally thought that was the end of the story. Like, it was like, there's no way it can get more intense than this. Well, it can. And that's why we have two episodes.
- [02:42]
Host
Just you wait. So, yes, this is our first two part story. You will have to come back for the second episode. I mean, you will be mad at us that we. You're like, oh my God, I need to know now.
- [02:54]
Erin
Yeah, you will.
- [02:56]
Host
You'll be very mad at us, but I hope you'll forgive us after next week and you get the conclusion. And then this is just a reminder also that this is another one of our guests who is one of our loyal listeners. So please, if you have ever thought, I wonder if anyone would be interested in hearing what I have been through, please send your story to Molly, our producer at stories themedical detectives podcast.com Honestly.
- [03:26]
Erin
This show exists because of y' all and your stories is what helps us highlight these issues. So even if you feel like your story isn't good enough, we often find that people are way too hard on themselves. And lots of these stories that we find absolutely fascinating and you find fascinating began with someone who didn't know if they had a good enough story to tell. So with that, let's get into our first two part episode.
- [03:56]
Host
Carrie, welcome to the Medical Detectives. We are so thrilled you could be joining us today.
- [04:01]
Carrie
Thank you.
- [04:01]
Host
Well, Carrie, we usually like to start the podcast by going back in time and since it is high school graduation season, could you describe to everyone what life was like for you when you were graduating high school?
- [04:17]
Carrie
I always just start the story by talking about how I grew up in Southern California, so 75 and sunny all the time, and was always a tomboy. And like people of my Gen X generation, we lived outdoors all the time. I think as a teenager and graduating high school, I was somebody who I would say would be like fearless. Nothing could ever indestructible maybe I guess you would say, and life was great and had friends and had plans, you know, go to college. And probably the last two years of college I was working at a ice skating rink and I was a hockey fan. My brother took me to my first Kings game when I was 13 and I was hooked. And so we used to play roller hockey. And then when I was working at the ice rink, I had the hockey director say, well, Gary, you're such a freak for this stuff. Why don't you play? And I was like, duh, because I'm a girl. And he was like, so, you know, come on out, I'll teach you. And so I would go when the rink was closed and the hockey director and the assistant director taught me how to play ice hockey. And from that point, that's, that became my. I loved it. I loved it. And I was one of two females in a men's league in Southern California, so I was playing with boys and Then when I moved to where I live now, a rink opened up the month after I moved here, and I was the only female, and, boy, they didn't know what to do with me.
- [06:05]
Host
So you're playing a highly aerobic, highly skilled sport in your adulthood, and otherwise, were you. Were you fairly healthy?
- [06:13]
Carrie
Oh, yeah. So I moved across the country from Southern California to Southern Indiana when I was 25. And at that point, I was, like, I said, I started playing hockey right away here and was playing in the men's league. I also, when people at work found out that I played men's ice hockey, they were like, well, you should do. They did karate. But I saw these guys coming in with broken ribs and broken legs, and I was like, no, no, no, no, no. But I was interested, just not in their full contact. So I started doing taekwondo. So I did do taekwondo and made it all the way to a brown belt in taekwondo. And I started playing sand volleyball. And I started dating who would become my. My husband. And he was super athletic. He was like the quarterback in high school. He was always a runner. He played all kinds of sports. And so that was one of our biggest things that we enjoyed together was sports being active. And so, yeah, very, very healthy. Very, very active. And by no means am I going to try to portray to you that I was good at these sports. The sand volleyball, I am not. I am not going to front on you. Like, no way. And even hockey, I'm passionate about it. I mean, I loved it, but I wasn't any good. I. I wasn't good. I mean, I ended up playing in the A league, and my husband, when he played, played in the C league, so. But I just loved it. I just loved it. And the boys that were unsure about me being out there, the men that were unsure about me being out there, realized that I was not to be messed with. And we had a famous story with one of the other captains. I became captain of my team, which is funny, too. One of the other and. And part of the. The board for the league. But one of the other captains, one of our first times that we got into some physical contact, he. We. We both went down on the ice and he said his thought process was, oh, no, I'm going to hurt Carrie. And my thought process was, I'm going to hurt him. Like I was. Yeah, I. If I was.
- [08:32]
Erin
You heard it here again.
- [08:33]
Carrie
If I was.
- [08:34]
Erin
Carrie can throw down.
- [08:34]
Carrie
If I was going down. If I was going down, you were going to go down, too. I had no problem twisting my stick between your legs. I mean, it just.
- [08:44]
Erin
Okay, so I will not fight you. That's what I've learned from so far for this episode is don't fight Carrie. She will fight back.
- [08:50]
Carrie
I'm a mean little, little thing. So.
- [08:54]
Host
All right, so you're kicking butt on the rink. So when did you first start having a symptom?
- [09:01]
Carrie
So. Came out of nowhere. Came out of nowhere. I started coughing a lot and feeling short of breath. And by a lot, I mean a lot. Like, you know when you have that urge to cough and you like, think that to satisfy the itch of it, you cough, but never got relief. Like you cough, clear your throat or something like that. Nothing was ever satisfied with that. So you just felt like you had to cough and cough and cough. And it was not a productive cough. It wasn't something where I was coughing something up. No sinus problems, no phlegm, no nothing. Just this annoying, annoying, constant cough.
- [09:46]
Erin
And did you feel like there was phlegm in there and you were just not able to get it up? Or is it just like an out of note? Like not anywhere related to this sensation.
- [09:57]
Carrie
Of needing to cough and an itch and a. Like you couldn't not cough, but it didn't help anything to cough.
- [10:06]
Erin
So more like allergy cough.
- [10:08]
Carrie
Just.
- [10:08]
Erin
I don't even know. I've never heard of a cough like this. I'm trying to do it just a.
- [10:11]
Carrie
Dry, dry, annoying cough. I don't know.
- [10:16]
Host
I can relate. In my second year residency, the second years have to do all the anatomy dissections in the morgue and I breathed in a piece of the cadaver and I had a cough that was an irritative cough because there was a foreign body, a little body, a foreign body body, parts of a body part in my chest. And I, I was coughing non stop. Now it got to the point where I was scrubbed in, in a spine surgery. And spine surgery is like an eight hour surgery. And, And I would be assisting, but I would go and I would have to try and like space out and time out my coughs. And finally they just kicked me out. They were like, get out of here. And I walked home. And as I was walking home, my chest started to tighten up and I said, I think I have to turn around and go to the er. And I had to have a nebulizer treatment. And eventually I did cough up what was the problem? But I will tell you, like, I, I needed to cough every 30 seconds and it was an irritating, like an irritation type thing. So I, I feel all Right, but. So you're. So you're hacking up a lot.
- [11:35]
Carrie
Maybe. Maybe how someone who hasn't dealt with something that gross could think of, like if you breathed in powdered sugar or.
- [11:48]
Host
Correct, correct. Yeah.
- [11:50]
Carrie
Dirt in the air, like that kind of irritation.
- [11:54]
Host
An irritation. So it sounds like you had an irritated cough and something foreign that's more irritating than, say, an infection.
- [12:03]
Carrie
Right, Right, Absolutely. But at the same time, I started noticing things like being short of breath in doing things that I'd never, ever struggled with before, never had an issue with before. And so that went on and on. And I went to the doctor, and at that point, I had moved here. I don't know how many times I'd seen this doctor, but it was established already. He was my general practitioner and went to see him and was complaining about this cough. And at that point, also, I remember getting colds. Let's say I would get sick same time as a coworker would get sick, and they'd be better in about a week. And I would be sick for, like, two, three weeks. And it felt like when I would get a cold, that cold would go straight to my chest. It was, like, settled into my bones, and I would eventually get better like you do with any common cold. But it took two to three times longer. And I seemed to start getting sick all the time. And so I did. I went to the doctor, complained to the doctor about the cough, about the shortness of breath, about getting sick. And at best, at best, he would put a stethoscope to my chest and be like, nobody. You know, I don't find anything, Any issues. I remember to this day hearing the words coming out of his mouth. Welcome to the Ohio Valley. Everyone here has allergies and asthma.
- [13:44]
Erin
I'm from the Ohio Valley, and I have allergies and asthma.
- [13:48]
Carrie
So he's talking about you. He just said, welcome to the Ohio Valley. Everyone here has allergies and asthma, and that's surely what you're dealing with. And I was like, I don't think so. I. I knew people who had allergies. I knew people who had asthma. I had never suffered with any breathing issues at all. I'd never suffered with anything medically at all. So when he's telling me this, I'm like, I don't think so. But he's the doctor, right? So, okay, so I go on my merry way.
- [14:26]
Host
Well, just a question. When he said this, were you presenting with, like, runny eyes, runny nose?
- [14:35]
Carrie
I mean, I've probably presented to him multiple times with A cold. But the. The most typical things that you know of with allergy, like the. The eyes and the. You know, I'm sure I had a runny nose at times with the cold, but definitely not the irritated eyes or anything like that. But when I would present with a cold, then, yes, I would probably be coughing up some phlegm. I would have runny nose, have nasal drip, have whatever. And. And I went to him multiple times with colds, and there were times when he would prescribe me an antibiotic. And, you know, so maybe at that point the cold had turned into maybe a sinus infection or something like that, or maybe he just gave me the antibiotics to shut me up and get me out of his office. I don't know. But either way, whether I got sick and got healthy again, healthier, or I got sick and I got an antibiotic and eventually got better, whether it was from the antibiotic or not, I don't know whether the antibiotic was warranted. I don't know. But each and every time. I never had any tests done. The most I remember him ever doing was putting a stethoscope to my breathing, so.
- [15:55]
Host
And after these colds, you would still be coughing?
- [15:58]
Carrie
Oh, yeah, yeah. No. So I would get better, like I said, you know, the cold would go away or the more troublesome symptoms, problems would go away. The cough never left. The cough never left. And the shortness of breath. Noticing that, doing things that, you know, it wasn't every day, like, I could just sit here and I wouldn't be short of breath, but doing activities, things that had never caused me to be short of breath before would cause me to be short of breath. Like walking on your street and you're going. I never realized this was an. On an incline like that. I'm short about. Yeah, there is a slight incline here. That sort of thing.
- [16:42]
Erin
So, like, as if you had lost your conditioning out of nowhere.
- [16:45]
Carrie
Yeah. Yes. And I was still playing all my sports. It was like if I had stopped doing all of them and had, you know, been inactive. Yep. And like we have already discussed playing on a men's hockey team. They were, oh, so empathetic and sympathetic that I do also remember them being like, what is your problem? Because I'm coughing and coughing and coughing. And they would tease me. They said that I sounded like a cat needing to cough up a furball. That's the sympathy I got from my teammates.
- [17:23]
Erin
Did they start calling you for.
- [17:24]
Carrie
No, no, they knew better.
- [17:26]
Host
But, but, but, but that's probably. I mean, it sounds like you were probably more wretched.
- [17:32]
Carrie
Yeah. Oh. Because hockey, you play very, very short shifts anyways, because it's actually an anaerobic sport, so you're losing more oxygen than you can possibly take in. That's why shifts are 30 seconds in the pros. You know, we would play, like, a minute or whatever, but you're hopping over the bench, back on the ice. And when I would come off a shift, I would rip off my helmet and take my water bottle and, like, douse myself, just trying to relieve the feeling like just. You could not catch your breath. Pouring it down the front of my jersey, down the back of my jersey. I mean, I was soaked after a game, and I would bring two water bottles because of that. So that's how.
- [18:19]
Host
But did you ever feel like you were overheated?
- [18:22]
Carrie
I felt like I could not breathe. And with that, I would be doing things to try to ease it. And, you know, the cold water helped, whether it was from being overheated or just trying to calm myself down, try to. I don't know. And then I go back on the ass again.
- [18:47]
Host
All right, so at this point, it sounds like the coughing is there, but it's not stopping you from doing what you want to do.
- [18:55]
Carrie
I'm very, very stubborn. Very. I'm a control freak. I'm very stubborn. My dad described me as type A personality. Thank you, dad. It just, like, just kept going.
- [19:09]
Host
So when did it go from being an inconvenience to a real problem?
- [19:13]
Carrie
Well, so my husband and I got married in 99, when I was 28. And when I got pregnant at 30, which I scheduled in between hockey seasons.
- [19:33]
Erin
Of course you did.
- [19:36]
Carrie
When I got pregnant, I think is when it came to a head. Now I know the additional strain that pregnancy puts on your lungs, pushing up on them is what I think pushed me over the edge. So they made me stop playing hockey in my first trimester. I played sand volleyball through my second trimester, but I started coaching hockey when I stopped playing hockey, and everything just became unbearable. I would have coughing attacks that were so bad, so violent, that I would throw up at my desk at work. I would have them at home and almost collapse on the floor. I don't think I ever, like, lost consciousness, but, I mean, that extreme. Really bad. So I go back to that doctor. That doctor was my everything. Doctor and pregnancy and everything. So I go to an appointment, and once again, nothing more than stethoscope and whatever. And I check out, and they bill me for both a prenatal checkup or a pregnancy check. Whatever, and a sick check. And I lost my mind, to put it nicely. I started throwing a fit and I said, you do not care about me. Your only interest in me is my, my insurance billing. I said, you're double billing me for something and you've done nothing. And you've never done anything for me. And so I, I left the office, I called my husband, I said, talk to some of your co workers. I need a new obgyn. I gotta get a new doctor. And I'm gonna put myself through different doctors to find out what's wrong with me. He got a referral for a wonderful OBGYN that I still see to this day. And thankfully we had really great insurance through his work. And I started putting myself through different specialists and I knew as my breathing. And I searched within the area, within our network, whatever, pulmonologists. So I'm going to go see some breathing specialists. And I went from one to another to another. I went through five specialists, five pulmonologists. They had pulmonologists in their name and none of them gave me any tests. They also said, you have allergies and asthma. And they prescribed inhalers, so steroid inhalers, albuterol, and told me to get a HEPA filter. We had a cat and a dog. Told me they shouldn't be sleeping in bed with you, but I, you can.
- [22:35]
Erin
Pry my dog out of my bed called dead, dead hands.
- [22:40]
Carrie
My husband would have divorced me probably, but no HEPA filters and inhaler. And I was the kind of pregnant woman who was doing. So they stopped me playing my sports. So I start walking a lot, like two hours every day. I'm thinking I'm going to be the best healthy mom there is. I'm walking every day and I'm like, at most I would take Tylenol. So then they want to give me an inhaler and I'm freaking out, like, is that okay for the baby? And they're like, yeah, yeah, yeah, it's fine. So I do the inhaler and it, I hate the feeling of it because albuterol just, it's not a good feeling. Sure, maybe it opened up my lungs a little bit with it, but it didn't solve anything. It might have given some temporary relief, but I'm like, just nothing.
- [23:34]
Host
I have to interject and I don't do this on the shows, but I know what you. Your eventual diagnosis is. So it is not this, but if you are a young woman who has had a prolonged cough, you must have a chest x ray to rule out lung cancer. Okay. The fact that no one ever gave you a simple chest X ray for an unexplained prolonged cough is ridiculous. So I'm, you know, I'm not spoiling anything here, but the fact that you did not have, you know, you have pain in your chest, you get an ekg, you have problems with your breathing, you get a chest ulcer.
- [24:15]
Carrie
Nope.
- [24:16]
Erin
I was just gonna say that I'd like to call to light here that Erin very rarely is like, that's unacceptable. So when it's unacceptable, when Aaron says that it's really unacceptable.
- [24:29]
Carrie
Finally, okay, they're saying it's allergies and asthma. I'm doing my research and I see that there's something called sports induced asthma. And I'm like, okay, if they insist that it's allergies and asthma, maybe that's what it is. I can maybe see that nothing else seemed to make any sense to me. So I finally go to an allergy and asthma specialist, and this doctor gave me my first breathing test. My first. It was the computerized what they do for kids to, to assess them for. For breathing function. It's where you. The visual.
- [25:12]
Erin
The two.
- [25:13]
Carrie
The visual is, is to blow out the candles on the cake. So that's why I say it's a kid's test. But, yes, it's a spirometer. And, and so I do that. And his reaction was, oh, this isn't good. And tells me that the tests Show I have 50% lung capacity.
- [25:34]
Erin
Holy crap.
- [25:36]
Carrie
Yeah.
- [25:38]
Erin
How are you functioning like. And playing a hockey game with that stubborn.
- [25:44]
Carrie
I understand. So he says, I'm going to give you a prescription for prednisone steroid. But he said, but I don't think it's going to help. I'm just going to give it to you. We'll see. If, you know, if miraculously you have a great reaction to it, then great, I'm giving you this, start taking it. And I'm referring you going to get you in immediately with this wonderful pulmonologist in the area. And I'm thinking, here we go again, you know. No, that. That doctor I credit with saving my life because he's the first doctor who ever listened to me. And so he gave me that breathing test, referred me to the doctor who also then took. Took me seriously. And I went into his office, and at this point, I'm probably seven months pregnant. So he does an X ray. You'll be very happy to hear, he does an X ray. He. He does the full Everything of this barometry, like everything, every single thing that they can do with all the pulmonary function testing. And he does a six minute walk test. So I'm walking around the office, normal, you know, flat surface, your. What, whatever speed you're comfortable with, and they have a pulse oximeter on your finger and you walk around the office for six minutes and they test how, how far you can go during that time and what your oxygen level stays at or drops to or whatever, and their heart rate and all that. And I mentioned that I was walking two hours a day thinking I'm being like super mom. So in a six minute walk test, my oxygen drops down to 80.
- [27:31]
Erin
That's not good.
- [27:34]
Host
And I'll tell you, when you're. When someone is sick in the hospital and we put a pulse ox on and it dips below 90, that makes us great.
- [27:45]
Carrie
So they had.
- [27:46]
Erin
You had a pulse ox on you at any other time?
- [27:49]
Carrie
I don't remember ever having that.
- [27:51]
Erin
That's also shocking to me because I get a pulse ox put on me even when I'm not sick.
- [27:55]
Carrie
And I see doctors doing that nowadays a lot. I don't know. I don't know.
- [28:00]
Erin
But I'm just shocked that you didn't even have a pulse ox. It's.
- [28:04]
Carrie
And you just stick it on. They explained to me that, that at that level I should actually be on supplemental oxygen.
- [28:12]
Erin
Holy.
- [28:13]
Carrie
And so I, I was like, oh, my God. So he tells me through these tests, there's limited what they can do because I'm pregnant. So, you know, the most invasive, the most anything that they could do was the chest X ray. So he tells me that I have interstitial lung disease. So the spaces in between your air sacs in your lungs, that's the interstitium, interstitial tissue. Interstitial lung disease was about the best diagnosis that he could give me at that point with the promise to do more testing after I had my daughter. But he tells me this I have ILD and that there is no treatment, no cure, and it's terminal.
- [29:02]
Erin
Is that your real diagnosis?
- [29:04]
Carrie
That is my initial diagnosis.
- [29:08]
Erin
So it is not your final diagnosis?
- [29:09]
Carrie
Not my final diagnosis. But it didn't get better from here.
- [29:13]
Erin
Oh.
- [29:14]
Carrie
Yep. Oh.
- [29:16]
Erin
Because that's. That's awful. That's awful to be pregnant and to get. I mean, I just googled it and it says the life expectancy is three to five years after diagnosis.
- [29:26]
Carrie
So I called my husband when I leave the office and he said, how'd it go? And I burst into tears. And he. I Said, he says I'm dying. And pulled myself together and decided to focus on the fact that can't worry about me. I've been walking two hours a day. Have I been killing my daughter?
- [29:56]
Erin
How did that feel?
- [29:58]
Carrie
Horrible.
- [30:01]
Erin
And did it, did it change the way you looked at your pregnancy at all?
- [30:07]
Carrie
Yeah, because I thought I was doing everything I could to be this, you know, my goal was to be the best mom and, you know, eating healthy and exercising, doing what I can with that. And then I think, oh my God, instead of that, I've been killing her. And so I checked my son, me and my husband. I said, we have to go to the hospital and get every test available done to make sure that she's okay. And they did again. Great. Insurance checked me in, did every test that they could. I don't. I couldn't name a single one because God knows I was just in pure terror at that point. And they said, no, she looks perfectly healthy. She looks perfectly healthy. No issues that we can see at all.
- [30:57]
Erin
Did you trust that or did you feel like in the back of your head that something still could be wrong?
- [31:02]
Carrie
Well, with doing the testing, like, I didn't trust the doctors when they told me I had allergies and asthma because that's not what I felt. But when you give me tests and results and stats and figures and concrete things, yeah, I trusted it. I trusted it. And after that, I was deemed technically high risk pregnancy, but everything else had been great, like no problems. And so they did weekly sonograms to check on her, and they were ready with the steroids, with the oxygen masks, with everything at my, my delivery in case. And they told me that they would give me until my delivery date or till my due date, but if not, they would induce me. And so came to the due date. Didn't happen. So we scheduled to be induced. She was born perfectly healthy. Perfectly healthy, incredibly happy, healthy baby. So go back to the.
- [32:07]
Host
Did you, did you go through labor? Yeah, they thought you were safe and healthy enough to go through labor.
- [32:14]
Carrie
They were ready if it wasn't. But. And you know, it's really funny is again thinking, I'm going to be supermom. Like, we went through the classes and I was totally thinking, yeah, I can do natural childbirth. And when they're teaching you to do the breathing and your partner is supposed to mimic you in the breathing, my husband was like, I can't do that. If I breathe to match you, that's hyperventilating like that, you know. So, yeah, I knew that that Was out the window. And yeah, epidural, Best invention on the planet. So good God.
- [32:53]
Erin
I don't know much about being pregnant, but I do know. Give me them drugs.
- [32:56]
Carrie
Give me them drugs. Epidurals, like the greatest thing ever invented in medicine. Um, so. So head her and go back to the. To my wonderful pulmonologist, and he does more tests. So we repeat all of the pulmonary function test checks, X ray, and now we can do a CT scan. And that is when I get a more defined diagnosis. And we also did a full family history with work history, environmental history, medical history, like, everything with that. So what they see is what a ground glass. I'm like, I got to even like, refer back to my. To my notes. The it's a ground glass opacities is what they see in my lungs. And funny, when he puts the stethoscope to my chest, he can hear very distinctly the things that you listen for with this type of lung disease. And so I don't know how the other ones magically didn't hear anything, but they didn't.
- [34:08]
Erin
And so because they didn't listen, they weren't actually listening. They were just.
- [34:15]
Carrie
They're just billing me 100%. Within the interstitial lung disease, there's like 200 different types. And so you can have some that are hypersensitivity reactions. So you would react to mold. You could react to moldy hay, mold in your house, bird droppings. You could have worked in an environment with silica and breathed it in and that causing it. People got this type of illness from working the grounds after 9, 11. But there's a lot of things that they rule out. And I have no family history. I have no environmental exposure. I have no work history, no history of pneumonia, because that could cause scarring in your lungs. So they rule out all this other stuff. And what they determined that I have is pulmonary fibrosis. Pulmonary is your lungs. Fibrosis is scarring. And so they can see the scarring in my lungs in that interstitial tissue. And because we cannot, because we've ruled everything else out, it's called idiopathic pulmonary fibrosis. So idiopathic means unknown cause. I have ipf. Idiopathic pulmonary fibrosis, unknown lung scarring. And then the next thing. Thing that they want to do is an open lung biopsy was kind of the common route that. That doctors did at that time. And from the minute that I got my diagnosis, I'm researching stuff and I'm reading about open lung biopsies and the one thing that I do know that happens with an open lung biopsy is that you will get scarring because they open up your lung, cut into it to test it and you're going to get scarring. And I'm thinking that doesn't sound good. That does not sound good. When my problem is that I have scarring in my lungs to do something that's going to cause for sure more scarring. And I say, okay, what's the pros of this? I'll get maybe a more specified diagnosis, but will it change the outcome? And he said, no, if I have NSIP or IPF or UIP or blah blah blah, blah, blah, blah, blah blah blah, it's still no treatment, still no cure because we've done the things to make sure that say, prednisone is not going to help with the inflammation and we don't have anything to remove me from as far as the sensitivity and those things. So he was very uncomfortable with it. But I'm telling you, this doctor was so great. He had none of that doctor ego where how dare you challenge me? How dare you not take my instructions? How dare you want to take time and talk to me about your Google searches. He asked permission to present my case before a national conference and took feedback from those doctors. And because I was so high functioning, maybe because I'm delusional, in denial, stubborn, whatever you want to call it, but I was very high functioning. And the other doctors agreed. And he said, okay, okay, we won't do an open lung biopsy because it's not going to necessarily help you. And so we agreed that we would just monitor me with ongoing pulmonary function tests regularly, like every three months. I think we did them. And okay, what's the biggest deal these symptoms? Can we do something about this cough? Can we do something about this cough? And so I tell people this, how long ago I was diagnosed with this? Mucinex was not an over the counter drug. Mucinex. I got GUI Fen. There you go. Prescribed to me. Mucinix did not exist. So I had that prescribed. And then he gave me Teslon Pearls, which are not like a regular cough medicine, but they're, they numb the receptors that make you feel like you've got a cough. So that helped. And I told myself with 50% lung capacity that I would just breathe two breaths for every one years. I've just got it all figured out and I'm just going to read two breaths for every one ears. If we can address the cough and if we can monitor to make sure, you know, the additional strain of pregnancy gone. I feel better. And you know, it's all your perspective. So when you feel sicker and then you feel better, you're like, oh, that's better, I can live with this. But I got a baby to take care of. She is my sole focus. So I'm not, not going back to the doctor and I'm not ignoring it. But we come up with what we agree is the course of action we're going to monitor. And the best you can hope for, because there's no treatment in a cure, the best you can hope for is stable, that it won't get worse. And with these type of lung diseases, they can go slow, they can go fast. I mean, you can get diagnosis and be dead. You can get the diagnosis or may never get the diagnosis. You can be stable, you can have a real slow progression. And as you looked up, life expectancy was three to five years. Well, I'd already gone three years without being diagnosed. So I'm like, I'm good, I'm good. I, I don't know. Denial. You're told you're terminal and you're like, yep, I got a baby to take care of, I'll take care of her. And went back to life, Went back to sports. I mean, six weeks after pregnancy, I went back to hockey. Yeah, caring, delusional, denial. I don't know, I don't know what you term it.
- [40:24]
Erin
Well, also, and also, here's the thing. My first thought was like, I can't believe that. But then the other part of me is like, listen, if you only have potentially two years to live and you want to play some frickin hockey, go play some fricking hockey. I don't think there's anything wrong with that now that I like take a pause and think about it.
- [40:41]
Carrie
And I stayed stable. We did all of our monitoring and I stayed stable. So then we're a couple years out from that. And when my husband and I first talked about having kids, we talked about having two. And so I went back to my pulmonologist and I said, look, we had talked about having kids. What do you think? And if he said no, it would be no and she would be our spoiled rotten little darling. And he said no, your pregnancy didn't cause, it didn't exacerbate, it, didn't have any effect on it. So he gave me a green light. So I get pregnant with my son and I'm thinking, look, I went through one pregnancy with this disease. Now I've Got my cough suppressants. Now I know what to do. Oh, and the other thing, back to what we do going forward is you get any sign of any cold, any infection, you immediately address it. Like there's no. Yeah, okay. No, you immediately address it immediately. Because anything that could put infection into your lungs, bacteria, virus, anything like that, immediately address it. So I'm thinking, I'm going to be cool with this pregnancy. Like, I'm going to be good with this. I know what I'm doing now. I know what I'm doing. Oh, I was wrong. I was so wrong. Oh, no. I mean, and I probably went like the first, you know, two trimesters, okay, I get a sinus infection in the third trimester. And I had my first panic attack because I could not breathe. I already was compromised. Then the additional strain from pregnancy, then you get a sinus infection and you really can't breathe. And I start freaking out. And I had my first authentic. Like, not just like, I can't breathe, but a panic attack. And I was struggling throughout the pregnancy, carrying my daughter in from the car when she's asleep and, you know, I'd be like, ready to collapse. And the struggles were there. But that boy, that sinus infection knocked me for a loop. And I'm freaking out and my husband's rushing me to the er and they gave me some Xanax. But from that point on, panic attacks were my. It was bad. So I got put on anti anxiety medicine and they brought in a oxygen concentrator and I used it at night. I wouldn't use it during the day, but I would use it at night to make sure that my oxygen wasn't dropping low at night. And I was freaking out so much. And the feeling when you can't breathe and you panic because you can't breathe this one thing. But when things were calm and I would still go into panic, you're like, oh, yeah, this is where that medicine is important. Because something has gone completely out of whack. And a feeling of impending doom and a feeling like, I need to escape my body. Oh, my God, oh, my God, oh my God. Like, it was. It was terrifying. And I remember at one point telling them, you just need to get this baby out. Like, I'm going to die, I'm going to die. You need to get him out. Somehow got through it. And once again, induced. And once again the wonderful epidural and wonderful, healthy, happy baby boy. And once again, additional strain. Pregnancy gone. And went back to hockey and went back to.
- [44:08]
Erin
Of course you did of course you did. I'm. I'm almost not breathing. I'm having panic attacks. I'm scared this child is going to essentially cause me to die. But let's play some hockey now. It's all good.
- [44:20]
Host
Well, I want to before, because I know where the story is going, and before we get there, I want to help the readers kind of understand the status of your lungs. So we do. My Dr. Nance Med School 101. But if you think my favorite class.
- [44:36]
Carrie
I love when you started doing these.
- [44:39]
Host
So your lungs. A lot of people think you need your lungs for oxygen, to be able to breathe. To be able to breathe. Oxygen is the most important factor, when in reality, you need two more things. One is space, and two is plasticity. You need the space for your lungs to expand and contract, and you need the plasticity to be able to expand and contract. If your lungs can't expand, no air can go in. If your lungs can't contract, no carbon dioxide can be expelled. So you need all of those things working at the same time. And in your case, if you think of your lungs as a sponge, a big fat sponge, it has little nooks and crannies of air pockets. Right? That's where the water absorbs. The lungs need to absorb the oxygen. They're absorbing the oxygen from the capillaries. And those little nooks and crannies are called the alveoli. So imagine you have your nice sponge and you start wrapping a layer of Saran Wrap around it. Now that sponge can no longer compress and it becomes stiffer. You keep wrapping more layers of Saran Wrap over that sponge, and now no oxygen can get in. And that's what was happening. Your body was forming scar tissue in between the nooks and crannies. Wrapping those nooks and crannies with Saran Wrap. And so you could neither expand or contract. And so if you can imagine, this is an ongoing process, progressive problem, where your lungs are progressively being wrapped and wrapped and wrapped in Saran Wrap. And you're going to reach a point where there's not going to be any. What we call diffusion.
- [46:36]
Carrie
Right, Right.
- [46:37]
Host
The air cannot diffuse through the Saran Wrap anymore. So this is kind of probably where you are at in the injured.
- [46:48]
Carrie
Correct. And. And the difference with my lower. So see, people are very familiar with copd, which is an obstructive disease, Chronic Obstructive pulmonary disease. IPF is a restrictive disease. So there's not something blocking it, there's something restricting it. And that's the hardness, the scarring. And so, yeah, it won't let you breathe in out easily. It becomes hardened scar tissue. So just like when you have a scar on your skin that's no longer pliable and it's just hardened. So I've been lucky to this point. This bizarre disease that we have no idea how I got, why it ever happened. I've been stable for many years now, and about a year after I have my son, all of a sudden it kicks back in. Yep. So the monitoring of the breathing tests, the CT scans, all of that show progression, my capacity to breathe. The pulmonary function tests are showing from 50% to 40% to 30%. And you can see on the X rays and on the CT scans, the X rays are getting more and more opaque. You normally. You see your bones. Not with me. You see a couple ribs up here. You see white moving up in both my lungs. They're becoming more and more opaque. And so it's getting worse. And I am again going to try to control all the things I can control and make sure I'm doing everything I possibly can. Um, and I went and got a second opinion because although I love my doctor. Well, let's see. Like the. The people that do lung transplants in Louisville. Let's go to these guys. They are the ones who do it. Let's go. I couldn't get into the guy who's the chief at of that practice, but I got into one of the associates and I went to that appointment. And I cannot tell you it was more disappointing, maybe as disappointing as those initial pulmonologists I went to. She listened to me and immediately suggested something that at that point, I had heard about in my pulmonary fibrosis foundation support group. It was a defunct medication that people were signing up for. The trials had already proven to be a failure. And she suggested that. And my husband and I sat in this appointment and went, okay, thank you very much. It's great meeting you. Goodbye. We're like, are you kidding me? So there went any idea that a second opinion would bring a new set of eyes, a new focus, a new option? No, that. That was terrible. Friend suggested pulmonary rehab. So I go sign up for a pulmonary rehab and at a local hospital. And initially I was really disappointed because most people there had COPD emphysema. So that's why they were there. I don't know that there was maybe one other person who had a restrictive disease there. So I didn't really feel like I was part of them. And I was able to do a Whole lot more than them. But I went. And again, I'm going to do. I'm up for anything. So I'm doing their exercises. I'm doing the treadmill, I'm doing weights, I'm doing resistance bands, I'm doing the arm bike, the ergometer. And they're asking me all the while, so what's your level of breathlessness? What's your level of pain? And I'm like, if I'm working really hard at the stuff, like maybe a three or whatever on a scale, five. And I'm saying to them, well, this is nothing compared to what I do at the Y and when I'm playing hockey. So I'm like, this nothing. And. And I tell you, I really think that they thought I was lying because one of them said, I want to come to one of your hockey games. I said, oh, that'd be great. So one of them came to one of my hockey games and came over to the bench. And as soon as I got off the ice, she put a pulse ox on my finger and it said 69. So that was my first truly, truly huge wake up call. She said, carrie, I know that you want to keep playing. I know that you want to keep being active. I know that you think you're doing the best for yourself to stay healthy, but if your lungs don't give out first, your other organs will. And she said, your heart is working way too hard. You are going to suffer some shutdown one way or another if you don't stop. And as you can see, I'm tearing up. I tear up every time I tell the story. And people are like, you've been diagnosed with a terminal disease, all this stuff, and you're crying because you got to give up hockey. Yes, because it was something I was passionate about. It was where all my friends were. It was. These friends were like family. They were my social outlet. They were everything. But more than anything, it. To me, it signaled that the disease was winning. And up to that point, I could say that I was the one in charge. At that point, it felt like I was giving into the disease and that the disease had won. And it was incredibly hard. And so in addition to giving up hockey, then I had to go back to my doctor and say, okay, I guess I need to. To go on oxygen. And then I went on oxygen. And to be someone with a terminal disease that nobody can see is. Is one kind of difficult world because people looked at me like, I'm healthy. And I was telling Molly this when we talked initially that it was, it was interesting. I remember at the Y, I was very thin because my body was working so hard just to stay alive, that I remember people saying to me, boy, what's your secret? Or, you look great, Or I wish, you know, And, And I remember it at one point when I was just really going downhill, that I did remark to someone snarkily, like, oh, all you have to do is have a terminal disease, be dying. Or I. It was, it was not a good response, but I think I kind of had it at that point.
- [54:03]
Erin
I'm going to jump in and say that was an excellent response because this, this is just a great example of what somebody's body or your perception of somebody's body does not really give you a good picture of what's going on inside. I also want to jump back to what you said about crying over hockey just really quickly. It's never about the thing that makes you cry. It's just the last straw. It's always symbolic of something so much heavier and deeper. And I think that what we've heard throughout this entire episode is that you always went back to hockey as fast as you could. So that was a safe space for you. And it probably came an example of health to you. I'm okay if I can play hockey. I'm not that bad if I can play hockey. So I can imagine having to give that up, as you really astutely said, was the final straw in having to acknowledge that you had an illness. And maybe up until that point, you were in a little bit of denial. I mean, do you feel I was.
- [55:09]
Carrie
Not a whole lot of denial. I think a whole lot of denial. And I also felt like, you know, I am a mean badass out there, and my kids could see that, too. Like, their mom plays hockey. They would bang on the glass. Oh, it was, yeah. And I was a control freak. I mean, but. And, and, and also, you know, back to the thing about having invisible chronic diseases. Like, I, yeah, sure. I, I, I present out here. Okay. You have no, no idea how much work it took to get here. You don't know all the steps I had to go through. I didn't just walk out the house. I had to go through all of this to be okay to get here, for you to see me looking. Okay. But that. There's more.
- [56:00]
Erin
Thank you for.
- [56:01]
Carrie
There's more to it. And you don't know what, you don't know what anyone's going through.
- [56:05]
Erin
I think there are so many people listening to this probably right now who are going that's me. I work so hard because you don't want to talk about your illness with people. You don't want to have to explain why you walk differently or you feel differently or your energy levels are different because it's a burden, right? You're already thinking about it all the time anyway. The last thing you want to do is talk about it with a stranger, with somebody you don't know about it.
- [56:25]
Carrie
People would say. People would say. Even when I would talk about it, they'd say, oh, well, I hope you get well, or, I hope you feel better. It's just like, I can't get well. I can't.
- [56:36]
Erin
I. I can't flick off the screen. But I want to, because it's like, thank you for having a very lack of understanding about what I'm really going through. But, like, I hope it made your day feel better. Giving you some.
- [56:47]
Carrie
It's so frustrating because you're like, I know you mean well, but I don't have to educate every person because nobody knew about this disease. I didn't know about this disease. So for them to be, no, there's no hope. There's no. The best I can hope for is stable. There's no getting better. And that was frustrating as heck to me. I thought somebody who smoked could quit smoking and they would get better, but I lucked out with the crappy disease lottery, and I, no matter what I do, cannot get better. So then we go, speaking of smoking, to the oxygen. And that was incredibly hard because I went from a person who you couldn't tell was sick to someone that you immediately clocked as sick.
- [57:33]
Host
At this point, even though we know that your oxygen levels are really low and abnormal, were you socially embarrassed to start the oxygen?
- [57:44]
Carrie
Incredibly. Oh, my God. So went from somebody who you couldn't tell was sick to somebody that you immediately clocked sick and someone you felt sorry for. You felt sorry for me. You pitied me. You immediately looked at me with pity, with. With all that or even more so judgment, because you looked at me. Anybody who has lung disease, you look at them and you go, they did it to themselves. They smoked. They did this to themselves. It's like judging someone who has liver disease. They must have drank themselves to death or whatever. It's not so simple, people. And at that point, I'm like, 37, 36, 37. And I'm carrying around a portable oxygen concentrator, and I am such a tomboy that I never even carried a purse. So I get to carry this oxygen now. And we went to just like a football. Just like football. We went and got a backpack, a Under Armour backpack or something that I.
- [58:49]
Erin
Could put it on like a camelback.
- [58:52]
Carrie
It had the breathable so they could function, whatever. But I'm carrying this, this backpack and I was immediately so self conscious and I'm not a very self conscious person. As you can see now. I do not wear makeup. I didn't carry a purse. I'm a tomboy. I don't give a what you think of me and how I look. I'm not girly. And I was instantly this person who was beyond self conscious and I didn't want to go places. I didn't want to feel that judgment. I remember at the grocery store overhearing a woman telling her the child with her, that's why you don't smoke. That's what happens when you smoke. And I wanted to like. No, I didn't. No, I didn't. No, listen, my sister in law did one, one good one. We went to breakfast and somebody asked if I had emphysema and she said yeah, because she started smoking straight out the womb. Like it was a great response.
- [59:56]
Erin
I just want to point out something. You're not on oxygen right now.
- [59:59]
Carrie
There's a long story after this incredibly long wind up.
- [60:08]
Erin
Wow, that's not even the end, y' all. We're gonna leave discussion for a lot of the things that are discussed in this episode at the end of the next episode because you do need a little bit more insight into what happens for us to kind of talk about some of the things that we learned. I. Yeah, I don't even know what to say. I don't want to give anything away.
- [60:33]
Host
Yeah. I think again, what I mentioned in the very beginning in the intro for women who have things that may seem benign. Right. Like, oh, what's. You had a cough, you know, how. How bad could it be? This is just a reminder that if something does not feel right to you, it is worth investigating. And you will not believe where this story takes us to in part two.
- [61:03]
Erin
Yeah, yeah, that cough, it could be pretty damn bad with that.
- [61:07]
Carrie
We'll see you next week.
- [61:20]
Erin
The Medical Detectives is a soft Skills media production produced by Molly Biscar. Sound designed by Shane Drause. If you have a medical story you'd like to see featured on the Medical Detectives, please email it to Stories themedical Detectives podcast dot com.
- [61:35]
Molly
The information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical 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 provider.