Kara's Story Part 1: Burning From the Inside Out

Summary

Summary of "Kara's Story Part 1: Burning From the Inside Out" – The Medical Detectives Podcast

Episode Release Date: June 25, 2025

Hosts: Dr. Erin Nance and Anna O’Brien

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Introduction

In the enthralling first part of "Kara's Story," titled "Burning From the Inside Out," hosts Dr. Erin Nance and Anna O’Brien navigate through a perplexing medical mystery experienced by their guest, Carol. This episode intricately blends Carol's personal narrative with professional medical insights, offering listeners a comprehensive understanding of a severe, undiagnosed health crisis.

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Carol’s Background and Love for the Outdoors

Carol introduces herself as a 34-year-old residing in Austin, Texas, with deep roots and a passion for hiking and the wilderness. Growing up in an "REI family," outdoor adventures were a staple of her life. She recounts her most significant backpacking experience: a grueling three-day, 30-mile hike in Big Bend with her brother, highlighting her resilience and adventurous spirit (04:08).

Notable Quote:

Carol (03:33): "Yeah, I grew up in kind of an REI family where when you reach certain milestones in life, you... I think at eighth grade, you got a North Face backpack."

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The Onset of Illness

In November 2021, Carol embarks on a hiking trip in the Ouachita Mountains near the Ozarks in Arkansas. Initially scaling back their plans to accommodate her emotional and physical state, she begins to experience unexplained symptoms despite her previously healthy lifestyle. As temperatures drop to around 30 degrees at night, Carol starts shivering uncontrollably and develops a severe cough, which she initially dismisses as environmental irritation or a minor illness (09:12).

Notable Quote:

Carol (05:38): "I had a really bad cough to the point where I was throwing up a little bit."

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Initial Medical Response and Misdiagnosis

Recognizing that her condition isn't improving, Carol and her brother decide to seek medical attention at a local facility in Arkansas. There, she is diagnosed with a urinary tract infection (UTI), pink eye, and an unspecified strep-like virus after a standard set of tests. Dr. Nance explains the nuances of UTI diagnosis, highlighting that a positive urinalysis indicates markers like elevated white blood cells but requires further culturing for precise identification (18:21).

Notable Quote:

Dr. Erin Nance (18:21): "When most people get tested for a UTI, the first thing that comes back immediately are the numbers of cells and the types of cells that are in your urine."

Despite these interventions, Carol's severe sore throat and escalating symptoms suggest something more critical is at play.

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Escalation of Symptoms and Hospitalization

The following morning, Carol's condition deteriorates rapidly. She experiences excruciating throat pain described as "swallowing knives," severe vision issues, and blistering in her mouth. Despite her brother's attempts to procure over-the-counter relief, her symptoms worsen, leading them to seek care at a larger facility in Hot Springs, Arkansas (14:58 – 19:36).

Upon arrival at the new hospital, Carol is immediately triaged, bypassing typical waiting times, indicating the severity of her condition (33:25). Dr. Nance discusses the significance of vital signs and the SIRS criteria, emphasizing how multiple elevated markers prompt urgent medical attention (39:08).

Notable Quote:

Dr. Erin Nance (39:15): "So I'm, I'm assuming you probably checked all those boxes to meet the SIRS criteria."

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ICU Delirium and Altered Mental Status

As Carol's physical state continues to decline, she experiences temporary blindness and delusional states—a phenomenon Dr. Nance clarifies as ICU delirium, a severe alteration in mental status due to systemic failure (50:00). Carol recounts hallucinating about being back at her campsite and attempting to escape the hospital, illustrating the psychological toll of her physical suffering (41:34 – 52:34).

Notable Quote:

Carol (44:25): "I was in such a dire state that that's not going to do anything. I mean, that was like a whole house is on fire and you're trying to put a drop of water or a drop of saline to quench this person's fire."

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Struggles within the Hospital

Alone and disoriented, Carol attempts to communicate her extreme distress to medical staff, who are inundated with her severe symptoms yet unable to pinpoint the root cause. Her narrative underscores the challenges patients face when symptoms defy easy diagnosis, highlighting both the limitations of medical systems and the imperative of patient advocacy (44:25 – 56:53).

Notable Quote:

Dr. Erin Nance (36:15): "I didn't have the language and the buzzwords and speak the doctor speak to be able to get taken more seriously."

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Cliffhanger and Anticipation for Part 2

As Part 1 concludes, Carol remains hospitalized without a conclusive diagnosis, leaving listeners eager for resolution in the upcoming episode. Dr. Nance and Anna express their anticipation, emphasizing the intensity and bravery Carol exhibited throughout her ordeal (57:00 – 58:18).

Notable Quote:

Dr. Erin Nance (57:17): "Yeah, I am struck by just how, again, terrifying it is to be. Nobody wants to be the medical mystery, right?"

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Notable Quotes

• Anna O’Brien (00:30): "I feel like we're on opposite sides of the world because I am currently in a cabin in the woods, and the only thing I'm running into are bunnies in the back behind the cabin."

• Carol (16:59): "I knew that I had never experienced such bad throat pain in my life, but I had no idea how to get from point A to point B in terms of explaining that to a medical professional."

• Anna O’Brien (33:23): "I want to be on your ship. Because if you can keep that going with all of that, that's the ship I want to be on."

• Dr. Erin Nance (52:34): "Yeah. So thankfully, my brother comes back the next day and is there to talk to doctors, talk to nurses, help advocate for me, because I have no idea what's going on at this point."

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Conclusion

"Kara's Story Part 1: Burning From the Inside Out" serves as a compelling narrative showcasing the intersection of personal resilience and the intricate challenges within medical diagnosis. Through Carol’s vivid recounting and the hosts' insightful commentary, listeners gain a profound understanding of the emotional and physical battles faced during undiagnosed medical crises. The episode sets the stage for a deeper exploration in Part 2, promising further revelations and resolutions.

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Disclaimer: The information provided in this summary is based on the podcast transcript and is intended for informational and entertainment purposes only. It should not be considered medical advice.

Transcript

[Anna]

Erin, how are you doing?

[Carol]

I'm.

[Dr. Nance]

I'm hanging in there. You know, I. You guys know I am kind of in a little whirlwind book tour right now, so she's everywhere I am. It's like, where in the country is Dr. Nance? But as of right now, I'm in LA. It's been amazing. I love running into podcast listeners at all of the events. I met three of the listeners in Charleston, where I was last week. So it's been really fun.

[Anna]

I feel like we're on opposite sides of the world because I am currently in a cabin in the woods, and the only thing I'm running into are bunnies in the back behind the cabin.

[Carol]

Better.

[Dr. Nance]

Better than coyotes.

[Anna]

Well, it's funny because every time I look at them, I'm like, if I get ill, I can use your blood to heal me. But that's all from. From another episode anyway. But this week's episode's really kind of intense. It's actually two parts again, guys, because this is a wild, wild story. But I think what's fascinating about this one is this. This is what you think about when you think about the most raw versions of a medical mystery. You know, being on the edge of death, holding on and trying to find an answer before you don't have any more time.

[Dr. Nance]

Yeah. I mean, this is something that literally no doctor knew what was going on, which is a terrifying feeling to be in as a patient.

[Anna]

Yeah. And I think that one thing that's so spectacular about this story is that, luckily, she is alive to tell the end of this tale, because a lot of people don't survive in these situations. So with that bold intro, before we jump into the actual podcast, I want to make sure a little request of y' all, if you have a story that you think is worth telling or you're not sure if it's worth telling, we would love to hear from you. You can send us an email at. And I always have Aaron say it, because I always mess it up.

[Dr. Nance]

It's stories Themedical Detectives podcast dot com.

[Anna]

You can tell which one of us is, you know, the more organized of the two. I'm the. I'm the more creative individual. We're not going to speak negative on it because they are both positive strengths. But. But I am not the list maker or the rememberer of this team. And then on top of that, another thing you guys can do that really helps us create these podcasts is just to go ahead and leave us a comment, a review star us, share us with your Friends, that is how we can continue to keep making these episodes for you. And honestly, it's the highest form of flattery for you to share our podcast with others.

[Dr. Nance]

Yes. When I hear someone tell me that I had to send this to my mom or I had to send this to my girlfriend, that is what is really meaningful to me. So, yes, thank you so much for all of our loyal listeners for supporting us. And let's get into this week's show.

[Carol]

Let's do it.

[Dr. Nance]

Hey, Carol. Welcome to the Medical Detectives.

[Carol]

Thank you. So happy to be here.

[Anna]

We're happy to have you.

[Dr. Nance]

Now, I think you have something in common with Anna, and if anyone follows Anna on social media, she is on a big outdoorsy kick, going to all the national parks. And can you talk about your relationship with the outdoors and how you grew up?

[Carol]

Yeah, I grew up in kind of an REI family where when you reach certain milestones in life, you. I think at eighth grade, you got a North Face backpack, like you got your first North Face jacket when you were in high school. I grew up hiking a lot. Definitely love the wilderness. My biggest backpacking adventure was I went to Big Bend with my brother and we did the Outer Mountain loop, which is three full days. It is like 30.

[Anna]

That is hard.

[Carol]

It is 30 freaking miles. And we did it without the use of a gps. So basically, if something went wrong, like, we would just be sitting ducks. I mean, you have no cell signal. You are in deep back country. You have to have permits to even access this kind of land. And my brother used to not want to bring a GPS because that was part of the fun of it, I guess.

[Dr. Nance]

Not hardcore enough.

[Carol]

Yeah, no, I was uncomfortable with that.

[Dr. Nance]

But so now, in order to do all these crazy three day hiking trips and everything, would you consider yourself a pretty healthy person growing up?

[Carol]

Yes, I was pretty healthy growing up. I never had a serious hospitalization. I never had a single operation. Never had any sort of major serious health scare.

[Dr. Nance]

And can you describe to us the journey of when things turned for you?

[Carol]

Yes, I can. So I'm 34 years old and I live in Austin, Texas. I was born and raised in Houston, Texas, and I have a lot of family roots in Austin. And I found myself traveling to Austin all the time on the weekends to go hiking. And it just made sense at a certain point to move here. So I had been living in Austin about a year.

[Anna]

Loving it from me, girl, I'm in Austin too. We're gonna have to get coffee after this.

[Carol]

I love it. Yeah. And actually I saw Anna that you're on a trip right now. And a few months before my story went down, I took a very similar trip where I did the van life thing for a few weeks, and I went to White Sands and I went to Guadalupe Mountain National Park. And I was definitely deep in my granola girl phase when I was living in Austin. And then life started to get a little bit bumpy. I had an amazing, amazing job, but it was remote. And so I think I was feeling a little bit lonely and isolated.

[Anna]

I get that it's hard.

[Carol]

Yeah. I started to have some troubles in the romantic department. And then I was driving home one night and I got in a hit and run, and it made me feel really vulnerable and exposed to be like, okay, here's this moment where I've experienced pain and trauma and you're not checking on me, you're speeding away, Right? It was a really, really sad and hard moment, and it messed up my neck a tiny bit. So I did five or six weeks of physical therapy. But the culmination of all of those things, right, Me being a little bit lonely, working from home, romantic problems, the hit and run, the physical therapy, it was kind of pushing me to get out of Dodge again. You know what I mean? It was pushing me to get out of Dodge, but it was also like, should I be getting out of Dodge? All this is happening, right? But historically, I had needed those defining moments where I push myself or I get in a different environment to kind of heal and return to myself. And so my brother and I had made plans to do Eagle Rock Loop, which is kind of similar to out at our mountain loop in Big Bend. This is part of the Ouachita Mountains near the Ozarks in Arkansas. We were going to do it over Thanksgiving break. It had like 30 river crossings, and you get to see all the fall foliage. And it's supposed to be this amazing, beautiful experience that also pushes you. But I knew that I had all of these tumultuous stuff happening in my life. So we scaled it back, and instead of doing overnights where I'm hauling everything on my pack, we decided to just still take the trip, scale it back a little bit, set up shop, set up camp and hang out near the campfire and do some day hikes. So it was like, perfect. I'm not going to overdo it, but I still get to get out of Dodge for a little bit. So we went on this trip, and the fall foliage was amazing. And I took some selfies during this time, and you would never have guessed that Anything was wrong. I am glowing. I look really happy. I look like myself, but I start to feel a little bit off. The weather's dropping down to, I don't know, 30 degrees or so at night because it's near Thanksgiving of 2021. And you're up, right?

[Anna]

You're in the mountains, correct?

[Carol]

Yeah, I'm in the Washington mountains, so I guess it's even cooler, right? And I had just gotten new sleeping bags that were supposed to be really warm and a bunch of new gear, and I couldn't get warm. I kept just shivering and shaking all night long. So my brother was camping out, and I spent the night in my 4Runner, thinking, okay, this will be a little bit more sheltered. I'll be able to stay warm. And I just couldn't stay warm. I was shaking all night long. And then I started having a really bad cough to the point where I was throwing up a little bit. And sometimes in different weather environments, my lungs can get a little bit irritated around allergens. So we were like, okay, you know, let's just ride this out. And ironically, right? That's what you do when you go camping and you're in the outdoors. You're riding it out. You're being tested physically, mentally, emotionally. You're in a state of trying to push yourself. So we just kept chalking it up to the environment and thinking, okay, maybe I had been exposed to poison ivy around the campfire, or who knew? Like, something weird in the elements.

[Anna]

I mean, maybe you're just getting a cold. Right?

[Carol]

Right. Like, what if you're.

[Anna]

I mean, it's cold out there. Barometric pressure changes, altitude changes. Like, you could just be sick.

[Carol]

Exactly. Exactly. And then I wasn't getting better. And him and I, obviously, my brother and I are adventure buddies and best friends. Right? We've done so many adventures together that it's really hard for us to call it. That's not. That's not our go to. And I said, let's just spend the night in a hotel. Because logically, that made sense as a good next step. If I'm not able to warm up in the car, let's get out of the elements. Let's warm up, let's get dry, let's get a good shower, good night's sleep, and everything will be good, right?

[Anna]

Maybe. Maybe like a cup of soup.

[Carol]

A cup of soup, yeah. Just all the standard healing things, right?

[Dr. Nance]

I mean. I mean, you wouldn't have found me, not in the hotel to begin with.

[Anna]

But that's, I will say, my version of Hiking Has a nice little do tour each evening to a hotel.

[Carol]

Exactly, exactly. I'm a glamping girl only now.

[Anna]

Welcome to the dark side. It is lovely here. We have soap and room service.

[Carol]

Exactly. Yeah.

[Dr. Nance]

But you had enough spidey sense to realize, okay, I gotta make some type of change. And this in your mind was the safest thing to do.

[Carol]

Exactly. And just to set the scene a little bit, it is 9 or 10pm at night. We had already attempted to camp for a night or two. And we're in the deep back country in Arkansas. And I don't know how to really articulate what that can be like. But if you know what deep Arkansas backcountry can be like, then, you know, I mean there's signs, barbed wire, bumpy dirt roads. It is a mess. And it's 9 or 10pm at night. And we're in my old 4Runner with 200,000 miles on it. And it's a small dirt road. I mean you're wondering if just the car can make it even without all these other circumstances. And we're having to pull over every 15 minutes or so so that I can yak. And we're surrounded by kind of signs that say no trespassing and barbed wire. And we're so deep in the mountains that just the journey to get into the nearest town probably took an hour, an hour and a half. So we make it into town, but we don't know what this town is. We don't know what this motel situation is. I mean we're in an old school motel. It looks like the carpet hasn't been replaced since the 80s. Old school, but it's better than being around the campfire when you're cold and sick. So it's home for the night. We crash out, we wake up. I'm not better. That's when I knew things were turning. I said I need to go to a hospital. And we looked up just the nearest one. To us it was technically a hospital, but it was one of those freestanding buildings. So I don't know that it had all the same capabilities as a hospital that's associated with a major hospital network or anything like that.

[Anna]

Quick question for you. Just, just because I'm curious, did you feel like way sicker than you normally would if you were just get sick?

[Carol]

I was having trouble breathing.

[Anna]

Oh God, yeah.

[Carol]

That you should go to the hospital for that and. Yeah, right. I think you have to be feeling pretty sick if you're already, you know, I'm like four layers outside of my Comfort zone. I'm in another state. I'm camping. All of these things are going down.

[Anna]

People tend to underplay how bad they feel because I think, you know, we all get taught that some type of weakness to feel bad. And so I wanted to help the listeners understand that this wasn't like you were just kind of feeling sick. You were. You were going down and you could feel it.

[Carol]

The ship was sinking. No, I so appreciate that, Anna, because obviously I have some ptsd. Well, I guess we haven't gotten to that point in the story, but things are going to get increasingly traumatic as I tell this story. And I think when we have ptsd, we think that we don't still have those memories, so it can be hard to kind of tap in. How sick was I? I mean, I don't. I don't know. This is the first time that I've ever recanted my full story, start to finish. And it's just for you guys. And I wanted to be able to do it kind of on the fly, too, to give it that authentic experience. So I appreciate you helping me lock.

[Dr. Nance]

In also something, you know, that we really, from talking to many of our guests and. And I introduced this term of this feeling of dread, and it's just a gut feeling that something is not right.

[Carol]

Right.

[Dr. Nance]

And like, you can't deny it anymore. And, you know, we talk about these stages of misdiagnosis in the beginning, right. You're like, I'll just sleep in the car. It's just I'm not warm enough. Right. Maybe it's my childhood asthma acting up. And that's part of the first stage is trying to. Again, whether it's pushing through or trying to deny or tamp down those feelings. But it seems like at this point, it is undeniable that something is wrong.

[Carol]

Right. Just the bits and pieces weren't adding up. I'm not feeling well. I'm throwing up as my asthma's acting up. I mean, this is not a stereotypical flu or anything that I've experienced in the past in terms of how I'm presenting. And I think that's exactly what I wish more medical professionals talked about, is that patients don't want to go to the hospital. And if they're at the hospital, they've already vetted and tried to understand what's happening to them to their best of the ability. They're coming to you a vulnerable, helpless state, thinking, I've tried. I can't figure this out. This is serious. Help me, right? So I'm at The hospital and they run a urine analysis. They test me for Covid, they test me for strep, and they take some blood work. I was negative for Covid, I was negative for strep. They landed on that. I had some sort of unspecified strep like virus. And then they also diagnosed me with pink eye. They also diagnosed me with a uti, urinary tract infection.

[Dr. Nance]

Even though your urinalysis is negative?

[Carol]

Well, I don't know what all they tested in the urine analysis, but I guess the urinalysis did come back positive for a uti.

[Dr. Nance]

Okay. I mean, just for everyone listening, when most people get tested for a uti, the first thing that comes back immediately are the numbers of cells and the types of cells that are in your urine. So if there's a high level of white blood cells in the urine or something called leuk esterase, these are just markers that we can assume there's an infection, but they don't know exactly what type of bacteria it is. But most people, when they have a positive uti, it means that they have had those markers high enough to. To suspect that you have an infection. But then they will additionally do something called a culture insensitivity, where they will capture the actual bacteria to grow it out and then test it against certain antibiotics to see, okay, you had E. Coli and it's susceptible to, you know, Bactrim or whatever, antibiotic. And that's how the actual testing takes place. And I don't think a lot of people know that it's something that I.

[Carol]

Didn'T know that clearly.

[Anna]

You just blew my mind.

[Dr. Nance]

Yeah. So when you go to the regular, like urgent care or whatnot, they will do kind of like a spot test to test those markers first. And then based on those markers, they will presume you have a positive uti, but it isn't until they actually get the growth of the bacteria, which takes a couple of days and then another couple of days to get the antibiotic sensitivity that they know, okay, you do have a positive klebsiella, E. Coli, you know, whatnot.

[Carol]

And I think that's where we left that. And this facility, it's kind of a facility where they don't have a whole lot of capabilities in house. And I don't know where I was in Arkansas, somewhere near Little Rock or Hot Springs, Arkansas. So I think there was a lot of college campuses in that state. So I think it was easy for them to say pink eye, UTI or something. You know, it's in the middle of the pandemic But I don't know why they didn't realize something's not quite acting up. One of my chief complaints was that I had the worst sore throat of my life. And I don't know why you wouldn't think. Okay, we're telling her she has a UTI. She has no history of UTIs. We're telling her she's not positive for strep, but it's presenting like strep. And we're telling her that she is pink eye. But this is an adult woman. Like, who did she get pink eye from? The dog? I mean, give me a break.

[Dr. Nance]

What were your eye symptoms at this point?

[Carol]

They were mildly swollen and burning and maybe had a tiny bit of discharge.

[Dr. Nance]

And there is a difference between viral conjunctivitis and bacterial conjunctivitis. So a viral conjunctivitis, I would say probably is presenting more like how you described, where it's not totally thick, goopy, green things that we consider. I mean, it can have that, but that's the difference between bacterial and viral pink eye. But listen, adults can get pink eye. That's. That's totally, you know, normal. But right now it's unusual, I would say, to be having uti, strep throat, and pink eye all at once.

[Anna]

All I'm gonna say is, like, what does one do to get those combination of things together?

[Carol]

That is a roll around in the leaves, apparently, in Arkansas. I don't know. So they discharge me. I'm only there during the day, right. So I'm just there for a handful of hours. I think that they prescribe me antibiotics.

[Dr. Nance]

So it sounds like you are leaving this a point where they're discharging you, but it sounds like you're maybe not exactly sure that they've.

[Carol]

They've got it right. Right. I was so in my infancy in terms of learning how to advocate for myself medically, even though I have historically always been someone that does a decent job standing up for themselves. But what are you gonna do, right? You tell them you're in pain, you tell them your throat hurts, and they say we're discharging you. You don't have really any choice. Or at the time, I didn't think I had any choice but to go along with it. And at that point you're thinking, okay, this is all in your head to a certain extent. You've been checked out. You've been checked out by medical professionals in an emergent facilities. And so they give you a little folder. Typically, when you're discharged from a hospital or ER setting that says, this was your diagnosis, this is your aftercare plan, or whatever. And so we really just leaned into that. We upgraded from our 90s or 80s motel and, you know, spent $20 more and moved to a red roof and found something that was just a tiny bit nicer, but still definitely a budget hotel in a small town. And I think I sent my brother to the store two times in the middle of the night because I was getting sicker and sicker. It was a very, very long night. I was basically just living in the shower because I had this sensation like I was swallowing knives. And our pain scale and how we refer to pain is very much a work of progress in the medical world. And so we don't have great descriptors as patients to explain when something is like, no, it feels like I'm swallowing knives, but not in a normal strep throat kind of way. This is unlike anything I've ever experienced in my life. And I knew that. I knew I had never experienced such bad throat pain in my life, but I had no idea how to get from point A to point B in terms of explaining that to a medical professional. So I'm sending my brother to the store and he's got a humidifier, he's got chloraseptic spray, he's got throat lozenges, we're throwing Advil, and I'm calling the ER back multiple times throughout the night. Just living in the humidity of the shower, thinking something's going to help me open up my throat a little bit. And they're saying, just ride it out, honey. There's nothing you can do. It's going to take a few days for you to get better. It's going to take a few days for the antibiotics to kick in. There's nothing left for you to do for now.

[Dr. Nance]

Which is, again, terrible position to be in for you, because you know something is wrong. Not only is it wrong, but it's escalating. And yes, I think there are. What you were alluding to was kind of like you didn't have the proper terminology. Where as doctors, we have our own language. If the woman goes to the er, he's like, I feel off. They're going to tell you, you have anxiety, you're having a panic attack. If you say, I am having chest pain, that is a buzzword. If you say, my airway feels threatened, that is different than I'm having a little difficulty breathing. Because what you're describing is not only severe pain, but pain to the point where it's affecting your ability to breathe. That is a vital function. And it's hard when you get discharged from the er. You don't want to just go back and seem like, you know, an annoyance or an ag. And when they're telling you you're fine, you're fine. Ride it out. I totally get why you're super frustrated at this point.

[Carol]

Right. So it's on patients too. Right. I didn't have the language and the buzzwords and speak the doctor speak to be able to get taken more seriously. And so the next morning, I'm so sick, and my brother's running back and forth to the store for me to think of what else he can grab. So I'm texting him a lot. And I went back and I looked at our text message history last week, and I had said, I need to go to the hospital. I think I'm having an allergic reaction. Because I think I knew deep down in my gut that this was some sort of allergic reaction. And I said, I can't talk. At this point, I'm losing the ability to talk. I said, you're gonna have to drive me there. You're gonna have to do the talking.

[Dr. Nance]

This is another example. If you do not have the ability to talk, that is a sign that you have an eminent emergency airway situation. So that for anyone who might ever be in that type of position, if you are not able to talk, that is an emergency.

[Carol]

I didn't know that. I had no idea I was having an airway emergency. I didn't know. All I knew was, was that I was getting worse rapidly. Which, correct me if I'm wrong, Dr. Nance, but I believe that if someone is ever deciding, should I schedule a doctor's appointment or should I go to the er if you are rapidly deteriorating, that's a key sign that it should be handled. Maybe at an ER over.

[Dr. Nance]

Oh, definitely. I mean, even if someone comes to me with symptoms, one of the key things that I ask is, what changes have you seen in your symptoms? And if it's, you know, well, I've had this mask, but I've had it for three years. Or this mask has grown over the past five days. So the time frame is very important.

[Carol]

Exactly. So at this point, we decide that we need to get to a facility that's better because clearly we weren't totally taken seriously. So we decided to not go back there. And we're gonna drive, even if it means we're gonna be on the road a while. We gotta get to somewhere bigger and better. So I think at this point, we went to. I think we were in Little Rock, and then we drove to Hot Springs, Arkansas. So I can't remember how long we were on the highway, but my brother was driving, and we were pulling over every 15, 20 minutes so that I could stop and throw up. So it was getting really, really bad. At this point, the interior of my mouth was covered in blisters. Like, it looks like blood blisters, but they're sizable and everywhere. I'm just sitting there, like, taking pictures on my iPhone, pulling my lip down. Like, why am I right? At this point, it has gone far beyond. Okay, her childhood mild asthma is acting up a little bit. She needs to hit her inhaler. Okay? She's never had blisters like that in her life. She's never. I. And I don't think I'd even ever had a UTI or maybe had one. But I wasn't one of the those women that chronically have UTIs. I hadn't had pink eyes since kindergarten. My eyes start to just feel like someone is holding a frying pan on them. I mean, it is extreme, extreme pain. I start to resemble a lobster. So my face is really, really, really puffy. Like, almost look kind of like moon face. When someone chronically takes steroids and their face just gets very, very round. I mean, I am just, you know, puffing up.

[Dr. Nance]

So right now, you are experiencing severe issues with your eyes, with your mouth.

[Carol]

It's all happening at once, Right? So obviously, at this point, I'm a tiny bit out of sorts, because that's a lot. You're in another state. I'm trying to keep up with multiple of my systems starting to crash out. And I was in shock. It was one of those moments where your life starts to feel like a movie. A movie that you're watching from the outside. All of the background noise, all of the clutter, all of the circumstances that distract you and busy your mind go away. It is just you. And the one thing. It's no different than someone that's stranded on a desert island trying to get off. Right? There is one primary objective, and the primary objective is get help and stay alive. I'm sure I was terrified and scared and all of those things, but everything was happening so fast. That's the one thing I wish I could help people understand, is how quickly you deteriorate. I could show you pictures from, like, noon on the Thursday of Thanksgiving and 1pm and 2pm and it's like, at noon, there's mouth blisters. At 1pm, there's a rash on my chest and trunk. At 2pm my eyes are swelling up. So there was so much happening so quickly that I didn't have the bandwidth to do emotional processing beyond a very primal level of, like, I am scared, I am terrified, I am alone, but I'm not cognitively processing the enormity of the situation that I'm in. And yet I'm driving the ship, you know? And yet I'm like, yeah, you got to go to this hospital. You got to look this up. We got to pick up my meds from the script. You gotta pull over here. You gotta find a bigger facility. I am, like, large and intrigued.

[Anna]

I want to be on your ship. Because if you can keep that going with all of that, that's the ship I want to be on.

[Carol]

Exactly. Thank you for saying that.

[Anna]

Give yourself some credit. Like, seriously, give yourself some credit.

[Carol]

So we show up to the hospital in Hot Springs, so it's a bigger, better facility. And I felt spoiled because I did not have to sit. I did not have to go in the waiting room for a single minute. You know how people complain about being in the hospital waiting room for hours and hours before they get seen. I did not have to give my insurance card, nothing. I walked in the hospital, and five seconds later, I'm in triage. And I didn't know it at the time that, like, clearly I must have looked so messed up, you know? Even though I looked messed up, I was still me, right? So I was thinking, oh, wow, look at this star treatment. Who is this diva? Look at this girl that gets to go straight back. Like, they must have heard who I am. I'm very important. They knew I was coming. Look, five star review on Google, you know? And in retrospect, I'm like, oh, I looked like a lobster. My eyes were swollen shut and I couldn't speak. They were like, we gotta get code red. We gotta get her back there. But I did not realize any of that at the time.

[Anna]

I love that your adrenaline lied to you so much.

[Carol]

Yes. Adrenaline. Adrenaline.

[Anna]

I'm doing great. They're just a great hospital. It's not that I'm falling apart visibly.

[Carol]

Adrenaline lies to you. I love that I forget about what a component adrenaline is, because I was pretty calm at this point in time. Like, I. I can do that to this day, where I go really calm during crisis. There's a medical emergency, you're gonna tell me I need surgery tomorrow. I'm about to lock in. I'm about to open my little Meditation app. You know what I mean? About to do all. Namaste. About to do. Right. I'm about to put on some inya, and we're gonna get this party started. So this experience definitely gave me the ability to walk in because you, in.

[Dr. Nance]

Essence, have to conserve your energy. You have to conserve every shred of energy to keep your basic systems alive, which is breathing, staying conscious. And you probably didn't even realize that, but that's. That's what.

[Carol]

Right.

[Dr. Nance]

This is a defense mechanism. Right.

[Carol]

I didn't even think about that being a defense mechanism. Our bodies are so wise. Our gut is so wise. But again, we've never been taught in a Western society how to listen to our gut, how to listen to our intuition, how to really advocate, speak our mind. All of these things that can help go alongside that.

[Dr. Nance]

I mean, it's because you don't have the luxury to be crying out in pain and screaming. Your body is doing everything it can to just keep you alive. And that's part of shock, Right?

[Carol]

But I mean, I guess it's okay in a situation where it's apparent that someone's in distress or has lost a limb or is bleeding out to a medical professional, if that person is in shock. But what do you do when it's not that severe? There's not, you know, massive trauma or massive immediate blood loss. And trauma and crisis can often present as stoicism. So, like, what. What do you do to manage that? Disconnect.

[Dr. Nance]

But I would tell you that would scare me even more if you presented looking so severe but were so calm. That makes me question, like, okay, like, you are an even more severe case than I thought.

[Carol]

So I'd walked into the hospital, right, and they rushed me back into triage. And at this point, I have a fever. I think my heart rate is maybe 101. My heart rate's a tiny bit elevated, and I can't remember what level fever I had, but it was anywhere from 101 to 104 throughout this experience. So it was definitely around 101 at the beginning, I would say. So it's lightning quick that I'm in triage. They're taking all my vitals. They're assessing me. They know that something is really wrong. I don't have to work so hard to advocate or convince someone that there's something wrong with me. They get me into a bed right away.

[Dr. Nance]

And I will just say that this is actually one of the good parts about the systems that we use in medicine. So there's a Criteria now called the SIRS criteria S I R S. And this is a criteria to help us identify sepsis patients before they necessarily go into sepsis. So if you have a elevated temperature, you have an elevated heart rate, you have a blood pressure that is below a certain level that's like, ding, ding, ding, ding, ding. You are now put into this potential SIRS criteria, which automatically makes them give you a level of support that is like they're preparing for something really serious. Whereas before, all of those metrics might have just been like, oh, yeah, she got a fever. Oh yeah, her heart rate's a little elevated. Oh yeah, her blood pressure's a little low. But when you combine them all, and this is a nationwide system that we are on the lookout for potential serious problems.

[Carol]

That's amazing. Yeah.

[Dr. Nance]

So you, I'm, I'm assuming you probably checked all those boxes to meet the surge criteria.

[Carol]

Oh, yeah. But at this point, it's my vision that's really bothering me the most. So I think I was visited by six or seven physicians within a 15 minute period, which I don't know that that's standard to be seen by that many physicians in that short amount of time. Unless you're in like a trauma bay. Right. Where you have a lot of people working on you. One physician would come in, ask me some questions, and then they would leave, and then another one would come in and then they would leave. And it was one of those moments, like I talked about earlier, where I thought that I was being really well taken care of. I didn't recognize, oh, crap, I'm really sick. So at this point, I have no idea what's happening, but I am continuing to deteriorate by the hour. I mean, you can look back and see I have photos where I'm a little bit bloodshot and a little bit swollen, and then one or two hours later, like I've been possessed. I mean, you know, like kind of when someone has a. What's it called, Dr. Nance? A sub, subcontractival hematoma. Like hematoma when they, when they pop a blood vessel or something in their eyes and it gets. Yeah, it looks like that. It's crazy town, right? And now I realize I was being checked on by so many doctors because they knew that I was really, really sick. And they also knew that they had no idea what was going wrong with me. So I think they were all checking on me because they wanted to evaluate me one on one and be like, oh, does this physician know what's wrong with Me? Nope. Does this physician. And then I'm sure they were in the hallway talking amongst themselves, being like, we have no idea. And it's at this point when I lose my eyesight and I go temporary, totally blind, so everything goes dark. And I was raised in like a pretty, just non Christian.

[Anna]

I just lose my eyesight, guys. That's no big deal. Sorry, pause for. Pause for terrifying.

[Carol]

Terrifying, yes. And my mom was like a Southern Baptist lady. I'm like a seventh generation Texan. So I was raised to not make a fuss and kind of be a good girl. But everything was dark, everything was black. And so I already consciously knew it was just me and survival. But that just dimmed out all of the outside noise even further and just kind of lit this inner animal instinct in me of like, you have to fight, you know? I am up in the hallway. I'm up in the hallway. I'm not in my bed shouting at the doctors, help me, help me. My eyes feel like they're falling out of their skull. My eyes are on fire. Like, it feels like someone's gouging my eyes out. I am just shouting down the hallway at them to help me. Which, like I said, if you know me and you knew I had that kind of be a good girl, right? Like, don't make too big of a stink upbringing. That was a lot for me because a hospital setting is really going to trigger my good girl tendencies, where I'm like, okay, I've got to behave. I've got to follow the rules. I'm in this professional building with a bunch of medical professionals. But I am not staying in my room. And I'm shouting at them down the hall and they're like, we'll be right there. We'll be right back with you. We'll be right back. And they're bringing me refreshed tears and they're bringing me different kinds of eye drops and rewetting solutions. But I was in such a dire state that that's not going to do anything. I mean, that was like a whole house is on fire and you're trying to put a drop of water or a drop of saline to quench this person's fire. It was doing nothing. I didn't understand why people couldn't help me. It felt like I was saying, help, help. My eyes are on fire. It feels like someone's holding a frying pan and you just want to shake somebody because it feels like they're not getting it. I couldn't comprehend how I could be in such a large Hospital having such an emergent situation, and there still be a disconnect between myself, the patient, and my care team in terms of understanding how much I was suffering and how far away we were from. Answers.

[Anna]

Great analogy. First. But second, you were blind and stumbling down the hallway, girl, you were brave. You were brave. Because I, I, I can't even imagine just one of my senses going and then having to advocate for myself while I'm losing myself. I, I, wow. Well, that's why I'm so shocked. It's like you're, you're getting up a while. I would been terrified. I feel.

[Carol]

So at this point, it did become too much for my body. I think I finally went into a bit of shock when I lost the eyesight, and I wasn't able to really understand my whereabouts so much anymore. I wasn't able to understand what was happening. At this point, I start hallucinating, and eventually it becomes nighttime. And we couldn't just leave my brother's dog in the car all night.

[Anna]

Oh, my gosh, I forgot about the dog. Yeah, I forgot about the dog.

[Carol]

I know. And so I talk my brother into going back to the hotel so that he can get the dog out of the car and get the dog into a bed for the night. And meanwhile, at this point, I'm alone in the hospital in a state that's not my home state. I have no idea what's happening. I've lost my eyesight. And I, I would continue to kind of stumble out of my bed, and a nurse would have to try and find me and, like, steer me back towards my bed. And I had no idea that I was in a hospital at this point. I think that I am camping, and I say, can you return me to my campsite? And I would feel the bed, and I would be like, no, this is not my campsite. You know, another one, right? Like, I'm just the classic ICU delirium hallucinations. And I'm like, why did that happen? Why did I think I was camping? And now that I've had a couple of years to process that event, I think my brain was trying to take me back to the last known place where I was safe, which my brain, the last coherent memory where everything was okay, was when I was with my brother and dog and I was around the campfire. And the longer you're in a hospital setting, the closer your connection grows to various hospital staff and the rhythm of the hospital, the soundtrack of your mind becomes all of the beeps and noises and cadence, especially when you don't have eyesight. You're kind of one with the rhythm of the hospital. But this was my first night in the hospital, so there was no rhythm for me to adjust to. And I distinctly remember really, really clashing with the nurses and trying to formulate plans for how I was gonna get out. It was almost like I felt like I needed to escape Alcatraz. So I had. This is gonna sound crazy, but I had formed these elaborate plans for how I was gonna get the heck out of there. I had told the nurses that I needed to take a shower, and I said that I needed to have all my belongings nearby. And my plan was I was going to go take a shower and I was going to regain my vision in the shower and I was going to call an Uber and I was going to get the heck out of Dodge. I can't tell you how terrifying and vulnerable it feels to admit on air on a podcast that I was making escape plans, right? Because it almost sounds insane to say out loud, but all I can do is look back at that poor girl that was suffering and was going through a near death experience and feel nothing but overwhelming compassion and love for her and know that she was just doing her absolute best to survive in completely foreign and unknown circumstances because they could not manage my pain. I don't know if I was not being prescribed adequate painkillers at the time, but I think that I was in so much pain that was also a reason why I was experiencing the ICU delirium. And to my knowledge, I could not physically open my eyes at this point. I think part of the reason that I'm blind is because my eyes are completely swollen shut. And so I was thinking if I could just take a hot, steamy shower, I could get my eyes de puffed and get the mucus and whatnot cleared up enough that I was going to be able to open my eyes and just for a minute or two, and then I was going to call an Uber and then I was going to get to safety. For some reason, I was thinking if I could just get back to my brother, if I could just get out of this hellish place, if I could just get in an Uber, this nightmare would be over. And the nurses did let me go into the shower stall with my phone and all my things, but I took the shower and I was not able to open my eyes enough to call the Uber like I had hoped. So at that point, I just became a little bit more resigned and accepted my fate and was like, this isn't good. I'm essentially stuck here being tortured, which I know it wasn't the hospital staff's intent to torture me, but I didn't know what was happening, so I just assumed that bad guys were torturing. And I'm gonna pause there and ask Dr. Nance to interject about ICU delirium. So it can be on the record that, like, I'm not crazy. This is a thing that can occur.

[Dr. Nance]

So what? I would actually reframe it as your body, the systems are shutting down. Your lungs were shutting down, your throat was shutting down, your eyes are shutting down now. And we talk about language. You now have altered mental state, and now your brain is shutting down. And so that is again, another on the doctors, like, checklist of how severe you are. You have now just crossed the threshold where you are now in altered mental state. And so you are now eminently like, you might have come in being like, wow, we're worried she's really swollen. Okay, now you have altered mental status. Now we're in a totally different ballpark. So ICU delirium is 100% a thing and a condition. And that's what happens when, again, you have a lot of different systems that are affected and you're in. A lot of times we talk about it more in the elderly, and so they get very confused when they're in a different situation setting. But for you, I would really more describe this in terms of you are having altered mental status. That's. That's how I would think of it.

[Carol]

Yeah. So thankfully, my brother comes back the next day and is there to talk to doctors, talk to nurses, help advocate for me, because I have no idea what's going on at this point. And frankly, the hospital hasn't figured it out either. And so I'm on, what, day four, day five of being sick. I'm at my second medical facility. My second day at this second medical facility, and we still don't have answers. It's really terrifying. They're grasping at straws. They put in my chart. I do not believe this is an allergic reaction. Can be really triggering to read my chart sometimes. And they did a full 10 test panel, like an STD panel on. On me. And yeah, no, I wasn't even sexually active or anything like that, but well be because there's.

[Dr. Nance]

You can have psych conditions from like gonorrhea. So again, the doctors are trying to just connect the dots. Right. So, like, well, what could be causing issues where you're having uti, like symptoms, plus you're delirious plus your eyesight is going. So they're trying to think out of the box. When I talked about that, like, Sears criteria, Right. That's automatic. Okay. They're drawing your blood to take blood cultures to see if there's bacteria to see if you're in sepsis. They're doing a chest X ray to see if you have pneumonia. They're doing a urine sample to see if you have uti. And if they're not getting any answers now, they're trying to figure out, okay, we have to go to our next level. Like, okay, the most obvious things aren't it.

[Carol]

Right, Right. So they were crossing things out. They had brought in an infectious disease doctor. So at this point, they're bringing in different kind of specialties. The infectious disease, I think, was thinking it was like hand, foot, and mouth disease. Some of the nurses were like, maybe she burnt some twigs with poison ivy around the fire, and it's poison ivy inhalation. So they have all of these theories, but frankly, none of their theories are right. But my brother and I knew that they were missing the mark. So there was definitely a turning point where it went from, wow, everyone is paying attention to us. Everyone understands the severity of the issue. To. They're shooting arrows in the dark. They have no freaking idea. We were thinking, like, okay, they're bringing in outside specialists. They're bringing in infectious disease. We knew at a certain point, people are guessing. People are guessing, and they don't know. My vitals are pretty unstable. I don't know if I officially received an EpiPen or officially coded, but I remember trying to make it to the bathroom and collapsing on the floor at one point and then coming in with an EpiPen and kind of almost stabbing me with it. I remember hearing a code called out on the speaker system, and it was a code about me. I was like, who's that for? And then everyone comes rushing in, Right. So I say all that just to illustrate how flipping sick I was. It was really, really dire. I'm so thankful I had my brother there with me. But unfortunately, this hospital is just grasping at straws. And I knew the situation was serious. I didn't know how close to death I came. And I am realizing right now, as I'm speaking to you, that the sudden onset temporary blindness seemed like the worst thing that could ever happen to me. But I'm realizing that's actually one of the reasons why. Why I'm alive.

[Anna]

I feel bad because we've left you with a ringer. We do not have a diagnosis in this episode.

[Dr. Nance]

I mean, does anyone have any ideas?

[Anna]

Ooh, what's your best guest? Anyone? I. I thought I knew because secretly I already know what happens in part two, but I did not know, as always goes.

[Dr. Nance]

Yeah, I mean, I am struck by just how, again, terrifying it is to be. Nobody wants to be the medical mystery, right?

[Anna]

No, absolutely not.

[Dr. Nance]

Nobody wants to be the person you're like, I've never heard of that. Or that only happens in textbooks.

[Carol]

Right?

[Dr. Nance]

So you'll have to wait one more week to find the answer, but stay tuned. And we can't wait to finish this ride with you.

[Anna]

Yeah. And I will say the most surprising thing of this continued journey is that talking to her, she is so calm. And so I don't want to say Zen, because, you know, I'm sure there's still anxiety, anxiety around it. But like, man, when you hear where this story goes, you're going to have a new appreciation for whatever breathing techniques and yoga she is doing because she's somehow found peace in a really challenging situation.

[Dr. Nance]

All right, until next week.

[Anna]

See you guys later. The Medical Detectives is a Soft Skills Media production produced by Molly Biscar. Sound design 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.

[Carol]

Detectives podcast.com 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 provider.