← The Medical Detectives
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- [00:01]
Aaron
Aaron, correct me if I'm wrong, but I believe this is the first episode where we had to record twice because there was so much meat on the bones to discuss.
- [00:10]
Dr. Nance
It is. They pulled us back in. Molly clawed us back. She goes, so you thought you were done, but we are not.
- [00:18]
Aaron
It's not over yet. In fact, I don't think we even got a diagnosis last week, did we? No, we did not.
- [00:24]
Dr. Nance
No. In fact, my husband sent me a very angry text, and I don't know, it's like, hangry isn't the right word for when you don't get the answer you wanted to in a podcast. You have to wait for the next. He was upset that he had to wait a full week for the final reveal.
- [00:41]
Aaron
Well, we get the final reveal, and just like Love Island, a bombshell, another diagnosis.
- [00:50]
Dr. Nance
Bombshell enters the villa.
- [00:52]
Kara
Exactly.
- [00:53]
Aaron
And with that, I think we can do no better of an introduction. Let's get into part two of what is truly an incredible journey.
- [01:02]
Kara
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 seem like the worst thing that could ever happen to me. But I'm realizing that's actually one of the reasons why I'm alive. I actually have a little bit of a medical family that I come from. So my father's the radiation oncologist. He's treated over 10,000 people with cancer. And my mom's a nurse. My sister's an occupational therapist. So. So at this point, I start playing the family medicine card. Not in, like, a privileged way, but they're starting to get really, really involved. They're making travel arrangements to come up to Arkansas. They're FaceTiming me. My dad's talking to his physician friends. It is all hands on deck. And the hospital where I was at in Arkansas just couldn't figure out. Figure out what was wrong with me. And I don't historically have really severe white coat syndrome because my dad's a cancer doctor, it was normal to talk about stuff like breast cancer at the dinner table. I'm somewhat comfortable in the medical world. And so if I have all of these tools in my arsenal and I'm still coming up short, it feels like in terms of advocating for myself or figuring out what was wrong with me, I can't imagine how much harder other people have it trying to get help medically. So at this point, my dad figures it out over FaceTime, which, if you know anything about FaceTime, especially FaceTime a few years ago. So this was November 2021. It's pretty grainy. And he just connects the dots and says, I think this is Stevens Johnson syndrome. We need to get her the heck out of there. Had never heard of this condition in my life. And when people told me I had Stevens Johnson syndrome, I was scared because I could feel all the hubbaloo I could feel, right? Because I'm not seeing, I'm just feeling, I'm sensing. I could feel that a lot of things were being set into motion. I knew that, okay, oh, what does it mean? That things are going to get more serious. But I also felt enormous relief because once, you know, a plan can be formed and I have an incredible family and an incredible support system. And so I knew that I was not getting the help and attention and care at this hospital in Arkansas that I so desperately needed. So I was scared. But I was also just, jesus, take the wheel. You know, so relieved that I didn't have to be the one doing all of the advocating, calling all of the shots, steering the ship, saying, we're not close, I'm suffering. Come on, guys, get it together. Like we could finally make a plant.
- [04:31]
Dr. Nance
Let's talk a little bit about stuff. Steven Johnson syndrome, because it's a super rare condition, so not many people have heard of it or seen pictures of it, but it is a hypersensitivity reaction. And we have had plenty of guests who have had similar type. These are problems where your own body is attacking itself and it affects the skin and the mucous membranes. So she was having blisters inside of her mouth. It was attacking her eyeballs. Painful burning when I peed. Right.
- [05:08]
Kara
Those were those early gyno symptoms. Correct.
- [05:12]
Dr. Nance
And this is a syndrome where 10% of the people who get it will die. So this is life threatening. And to give you guys my Dr. Nance Med School 101 example, I would liken it to. You've got your house, and inside your house you have wallpaper, you've got paint. And all sudden this demo crew comes in and starts splashing paint thinner everywhere. And your wallpaper starts to peel off, and your paint starts to peel off. And so it exposes the underside of the house, which is so painful. And that's what's going on. You're basically sloughing off the layers of skin and linings of your body.
- [06:02]
Aaron
The way you talked about it does not do justice to what was happening inside of you. That sounds absolutely horrific. So if I'm understanding correctly, it's like your body creates a blister or like a wound where it's eating away at your skin, and then it just kind of falls off, and then there's the next layer, and we're going to start taking that off. So like, literally peeling yourself from the inside out, that is nightmare fuel.
- [06:33]
Dr. Nance
Correct. And taken individually, the symptoms, you might be able to think, okay, yeah, the eyes. But again, to have the temporary blindness, that is just not putting conjunctivitis, to have the mucosal blisters. There's plenty of reasons why you could have a blister inside your mouth. But taken together, this is why you have to take a step back. And it's probably why your dad was able to be the one to diagnose this, because he was looking at everything from a vantage point far away. He wasn't the ophthalmologist being called in to look at your eyes. He wasn't the GYN person coming to to take a look at your potential uti. He was looking at it. This is my daughter who was having X, Y, and Z. What is the connecting factor?
- [07:20]
Aaron
How did your dad know? Did he ever tell you how he had that light bulb moment?
- [07:26]
Kara
Cause he's my dad. I'm the youngest of five kids. Right. I'm a daddy's girl. He'd do anything for me.
- [07:32]
Aaron
I just imagine your dad sitting there putting all these symptoms in, trying to figure out what a lovely story for you and your dad.
- [07:39]
Kara
Yeah. So I think because at this point, I didn't have eyesight, I might have missed a few symptoms that were progressing. So in my chart at this point, it does say that I have a rash that's originating at my trunk and extending outward. So it kind of does look like poison ivy. It's just a speckled rash on my chest, on my trunk, and it's growing by the hour. But I didn't have eyesight at this point, so I wasn't able to see that. But it's really interesting when you go back and look at the medical notes for the first two days, every time they put a little chart update, it says, we do not believe this to be Stevens Johnson syndrome. We do not believe this to be Stevens Johnson syndrome. They have those exact words written in my chart over and over again. And then my father and his physician friends get involved and basically tell the hospital, hey, this is what we think it is. And then the hospital in Arkansas Orders a biopsy. That's how you confirm that it is. I mean, when it's a full body rash along with the mucosal involvement of the eyes, mouth, and genitals, you can say it's suspected Stevens Johnson syndrome, but ultimately confirm it with a biopsy. So they ordered a biopsy and the notes changed real fast to be like, she has Stevens Johnson syndrome. Suspected. Yeah.
- [09:06]
Dr. Nance
So I will tell you one thing, and this is a major, major problem with electronic health records, is that whoever wrote that first, this is not Steven Johnson, or we don't suspect this to be Steven Johnson syndrome. Every subsequent note was copy pasted or.
- [09:21]
Kara
Okay, that's why I saw it over and over again.
- [09:23]
Dr. Nance
Correct. But the problem is that the ophthalmologist comes and sees that note and says, well, it's not Steven Johnson syndrome. And then the GYN comes in and she sees that, oh, it's not Steven Johnson syndrome. So this is my problem with electronic health records is that we have abandoned original thought in our documentation. So the problem is that if one person says it, well, it must be true because it's in the chart. So I, I mean, I could be wrong, but I doubt that for every day someone that makes sense wrote, this is not Steven Johnson's. This was automated because that's what electronic health record does. It copies and pastes. And that's why whenever I have to write a note, I don't use the templates or anything, even if it's just three sentences. I want my original thought process on the record, not using the templates and doing the buttons or whatnot, because that's what matters. We want to know the inner thoughts of the doctors. That's the original purpose of a note. I would suspect that that was just a copy paste, auto generated thing, but that can have significant consequences because of that. So, Kara, sometimes we cover diagnoses that are syndrome, Stevens Johnson syndrome. And for people who don't know what a syndrome is, it is a collection of clues, a collection of symptoms that's kind of like a puzzle that's trying to help us lead to what the diagnosis is. But oftentimes it doesn't come with a cause for why this happened in the first place. In your case, was there any clue clues as to what was causing the Stevens Johnson syndrome?
- [11:13]
Kara
So in my particular case, we were not able to get to the bottom and pinpoint exactly what caused my Stevens Johnson syndrome, which will always haunt me a little bit. But I would say that Stevens Johnson syndrome is primarily a severe, sometimes fatal allergic reaction To a pharmaceutical. It can also be a reaction to a virus or it can be idiopathic in nature, meaning origin unknown. So the slogan for Stevens Johnson syndrome is educate before you medicate. So there are certain classes of medications that can come with a greater risk of Stevens Johnson syndrome. So like Bactrim, which is really common for women to have to treat like UTIs, certain antibiotics, certain seizure medications such as lamotrigine or Lamictal. But it can also be caused by Advil or Tylenol. So it can even be caused by, by over the counter drugs.
- [12:30]
Dr. Nance
Kara, I want to go back to the moment when your dad is diagnosing you over FaceTime. How did your team take that recommendation?
- [12:42]
Kara
I don't really remember. To be honest. I don't remember. But I don't know that their ego was a problem because they have a patient that's presenting with really unstable vitals and is now being diagnosed with something that could potentially be fatal. So things started happening much faster when he got involved. So what their reaction was specifically, I don't know. But next thing I know I'm getting a biopsy. Next thing I know the chart is now saying suspected Stevens Johnson syndrome. Wheels are in motion. And I think that the thing about Stevens Johnson syndrome is I don't know how quote unquote treatable it is versus something that you're managing the symptoms and the side effects and letting run its course. It's not like you can really stop it in its tracks when it's gotten to the point where, where I was having a full blown life threatening medical emergency from it. If you were to notice a small rash and you had started a new medication, you could potentially have an extremely mild version of Stevens Johnson syndrome. But I had the life threatening version, which is actually called 10 or toxic epidermal necrolysis. So for me it had gotten life threatening. So at this point I'm shifting out of self advocacy and I'm letting my family really take the wheels. You have to remember that I don't have eyesight so I'm not able to google what's wrong with me. I don't know what I'm up against. I don't know how bad it's about to get. I don't know anything other than help me, I'm in pain, what's going on. So traditionally Stevens Johnson syndrome is, is treated in a burn ward. It is not your typical house fire burns or a chemical burn. But a lot of the standard protocol for treatment is symptom management. Manage the burns so at this point, we have to get me to a burn center. So it just becomes a game of which hospital has a bed open immediately and also has the faculties to manage the severity of what's going on. So we chose Memorial Herman in Houston, Texas, because that's where my parents live. The Texas Medical center is the largest medical complex in the world. Memorial Herman is a level one trauma center, and they have a burn ward and they have a bed open.
- [15:28]
Dr. Nance
And what I want our listeners to understand is that when you have a burn, it is more than just the pain of loss of your skin. The real danger is, number one, you have lost that protective barrier, so you are at heightened risk for secondary infection. And number two, your skin acts as a modulator of your heat, your temperature. So you have now lost a major function of your own ability to modulate your homeostasis. And that's why you can have rapid shifts in your fluid. Your blood pressure can tank at any second. So the burn victims are often the most tenuous patients. There's something called an eschar, which is like a 360scab, which can actually constrict on parts of your body, and if it constricts on part of your chest, you can't breathe. So a burn victim is a very, very dangerous, high risk patient.
- [16:37]
Aaron
Okay, just to clarify for me, so you can have a scar, like if your skin falls off in 360, a scar can form and strangle you.
- [16:45]
Dr. Nance
Correct. It's called an escar E S C H A R And there was actually an episode of the pit where someone came in and the eschar was actually crushing them from the outside. So, yes, that is a complication of a burn.
- [17:02]
Aaron
Okay, that is terrifying.
- [17:06]
Kara
Yeah. So once my dad's involved and the biopsy is done and the whole medical team in Arkansas is on board, he's like, we got to get her out of there. So my father helped me arrange a life flight plane to come and get me, because at this point I'm so incapacitated that my family is heavily involved, helping make calls, making it all happen. On the back end. It was actually a small plane that came and picked me up from Arkansas and took me to Memorial Herman in Houston. A lot of people think of a helicopter when they think of life flight, but a helicopter can only fly, I think, around 240 miles, or there are certain mileage limits. And so a little plane came and got me. And honestly, you might think that this was the scariest moment of the whole experience, but this is where I felt the most safe and the most protected because I had this chaotic experience at a hospital in Arkansas where I'm hallucinating, where it's taking days to diagnose me. And then when the plane came and got me, all I hear are these masculine sounding men. It was like five male paramedics and a male pilot. They're hoisting me up on a stretcher and lifting me into a plane. Can you imagine just being surrounded by all this masculine energy as you're in this dire moment? Suddenly, it was no getting pain meds. It was no problem pressing the page button, getting a nurse to come check on me, because their whole job is to keep you alive in flight. Their whole job is to get you safely from one destination to another while you're incredibly fragile and in this dire state. So you have just voices checking on you constantly. Oh, do you need a little bit more medication? Are you. Are you comfortable? Are you stable? Like, all eyes were on me, right? So here I am thinking I'm getting just the VIP treatment once again, not knowing that all hell was about to break loose. I thought all hell had already broken loose and that was just the appetizer, baby. I mean, we were not even at the main course yet. So they get me hooked up with a nebulizer and different sorts of medical interventions right when I arrive, and I think within hours of arriving, they give me an amniotic membrane graft. And this is a procedure. Yeah, this is a really, really cool medical operation. And they said that if they had not this, my doctor said if they had to wait till Monday to operate on my eyes, I would not have any eyesight to this day. So almost within immediately of landing at the hospital in Texas, I was wheeled into the OR where they completed an amniotic membrane graft. So a lot of people are blind from Stevens Johnson syndrome, and they never are able to regain their vision for the rest of their life. And the reason why they go blind is because you're burning from the inside out and it's attacking the mucosal lining on your body, which is most heavily concentrated in your eyes, your mouth, and your genitals. So there becomes excessive scar tissue buildup all on the inside of your eyelids, all over your cornea. So basically, the scar tissue formation gets so thick over the surface of your cornea that you lose your eyesight. So an amniotic membrane graft is essentially like putting a fire hose on a house fire. We are attempting to cool things down, essentially. So you take amniotic membrane From a donor mother. And you sew it onto the surface of the cornea. And then on top of that, my eyelids were sewn together.
- [21:19]
Aaron
They sewed your eyes shut?
- [21:22]
Kara
Yeah, because the inflammation in the scar tissue is also building up on the inside of my eyelids. And so every time I blink, I have a risk of abstaining abrasions and more surface imperfections on my eye.
- [21:37]
Aaron
Holy cow.
- [21:39]
Dr. Nance
How did that feel, to be conscious and have your eyes sewn shut?
- [21:43]
Kara
Well, I mean, I don't think anyone told me ahead of time that my eyes were going to be sewn shut. I just woke up unable to open them, with them kind of bloody, crusty, dusty. And also they said that it was like a. A bloodbath trying to extubate me from surgery. So they weren't able to get it.
- [22:07]
Dr. Nance
Oh, because of the mucosa blisters.
- [22:09]
Kara
Because of the mucosa. Because I had blisters and I was sloughing all through my throat. They could not see what they were doing to safely remove my breathing tube. So when I woke up from surgery, I was in the ICU in a burn ward with my eyes sewn shut, with my hands tied down, with a ventilator in me. Because when a patient is agitated and in that severe of a state, they could accidentally. At least this is my understanding, correct me If I'm wrong, Dr. Nance, that they could try and rip out their breathing tube.
- [22:48]
Aaron
So they had you restrained then, right?
- [22:50]
Kara
Yeah.
- [22:51]
Aaron
What a way to wake up.
- [22:52]
Dr. Nance
I'm guessing there was no talk about this before you went under, no expectations.
- [22:58]
Kara
I mean, it was. It was time to act. We had to act quickly.
- [23:02]
Aaron
Okay. Do you have any recollection of waking up and what did you think had happened? Like, I know you know now, but then did. Did you just.
- [23:11]
Kara
All that people were telling me was that it was going to get worse, and I did not know what that meant. They were saying this was just the beginning, it's only going to get worse from here. I wound up spending about 30, 31 days in total in a hospital system, including my time in Arkansas. And some of the most painful parts of the whole experience was just placing your standard lines that you would place for any patient who was in an intensive care unit. The most painful day of my entire life was the day that I got my PICC line placed and my catheter placed and I got an NG tube placed. Because at this point, remember, I'm lobster mummy girl. Seeing those lines was way more tricky than it was to place for the average person. They tried to place my feeding tube up my nose several times and it would get dislodged or they couldn't do it very well. It would come out and they would have to start over. And then also to set the stage a little bit, this was Thanksgiving of 2021. So we were in the middle of one of those pandemic surges. So a lot of the people that were helping me were nurses in their 20s, because so many people quit during the pandemic that they weren't able to pass along all of that historical and generational knowledge. I locked into my senses because I didn't have my eyesight, so my hearing became really, really sharp and very sensitive. So I would be able to hear the TV blasting, like, hospital surge, pandemic. Right. We're going through another one of those COVID variants where things are shutting down. So the vibe of the hospital staff was they themselves were freaked out because they didn't know what was going to happen with the whole hospital. They don't have the nurses from the previous generation to tell them about Stevens Johnson syndrome and help them place this NG tube of this super swollen patient.
- [25:30]
Aaron
Erin, I have a question for you. Is it normal for people to tell you that it's going to get worse?
- [25:37]
Dr. Nance
I mean, I actually am grateful that they did tell you that, because what I was asking before about was, did you have any sense of the prognosis of your condition? And that's what they were trying to elude when they were talking about it's going to get worse, because if you at least have some expectations about what's going to happen, then it won't be as scary when it does happen. Having a diagnosis is power. They knew you had now this syndrome, and now they know historically it's going to get worse before it gets better. And so that's why they're trying to do things like put in an NG tube, because they probably realize your esophagus is going to start to swell up and shut down. And so they're doing these almost preventative prophylactic measures to keep you alive.
- [26:33]
Kara
That's exactly it. I'm so glad you jumped in and explained that. And if you remember from the beginning of my story, I'm the girl that likes to drive the ship, right? I'm the one that's telling my brother, you're going to have to do the talking. I'm throwing up, but you're driving me to the hospital. This is where we're going. You need to research it. You need to pick up My meds, I like to be in charge. And it said consistently in my patient notes, patient is agitated, patient is a little bit cantankerous. And sure, I'm sure I was a pain in the butt. Right. For some nurses at times. But I also think that cantankerous nature is part of the reason why I'm alive. And can you imagine you're in all this pain and someone comes up and tells you they need to place all these lines and do all of these things? I did not want to have that NG tube placed. I did not want even more pain, even more procedures. So they had to tell me things are about to get worse. They had to tell me, we need your cooperation. We need you to let us place these lines.
- [27:41]
Aaron
So with the syndrome, there's nothing you can do. You kind of just have to ride it out as best you can.
- [27:47]
Kara
So having the early amniotic membrane graft, being at a level one trauma center, placing all those, like Dr. Nance was saying, preventative lines is what helped save my life. I probably would not have bladder function to this day had we not placed a catheter. I might not be able to breathe or eat or swallow early had we not placed the NG tube and whatnot, because that's helping keep everything at least a little bit open. If there was a hole, there was blood coming out of it. So my ears were bloody. There was blood streaming out of my nose, out of my mouth. I have never published online the worst of my photos that I have from this time period, because if you even Google Stevens Johnson syndrome, you will get a warning from Google. And a lot of the images have been taken down because it looks very zombie apocalyptic, because you're not bleeding in the sense of squirting blood, gushing blood like a gunshot wound. You're just kind of melting as blood is just continually for a month dribbling down. So I had 24, seven, just suction where I could spit the blood that was continuously coming out into. I had all. I don't know what they're called. They're like, look almost like little lollipops with foam on the end. So they're. Those were always like in my mouth and in my cheeks. Yeah. And everything is trying to close up. I love this analogy of kind of think of a scab healing the way that your skin stretches together. So if my entire body is one giant scab, your skin is then trying to just shrink and close everything up to try and heal itself, not realizing, hey, body, we actually need some of these holes. To still function and stay open. That's why it was so amazing that I had a breathing tube at one point, that I had an NG tube, that I had a catheter. And every time that I would snooze a little bit, my mouth would seal shut. So I would be like that, not able to speak. And so to be able to open my mouth, I would need a tub of warm washcloths. And then I would hold it against my mouth, and eventually I could descab and decrust enough that I could speak.
- [30:22]
Dr. Nance
It is true, Anna, that there's nothing. These are all what's called supportive measures. So they're trying to protect things, but there's nothing to stop the progression of the Stevens Johnson syndrome is the issue. You can remove the offending agent if it's a reaction to medicine. Stop that medicine. But they don't have an antibiotic, they don't have a steroid dose, they don't have radiologic intervention. Yeah, that's.
- [30:53]
Aaron
Carrie, you are a strong ass woman. You are a strong ass woman. I just. I'm sure you already know that, but.
- [31:01]
Kara
Oh, I don't. I don't hate being reminded. I definitely flirted with deaths, so I was able to get extubated at some point, prove I could breathe on my own. We could take me off the ventilator so I still couldn't see, but at least I had use of my mouth, which is very, very important to me. If you can't tell from this very verbose podcast episode.
- [31:25]
Aaron
You string your words well. You string your words well.
- [31:28]
Kara
They told me I needed another amniotic membrane graph because, like I said, it always goes back to the house fire analogy. You're putting a hose on the fire, and it's cooling it off in some parts, but then the fire can catch again. We can't really cool things down. And after being ventilated, I did not want another amniotic membrane graft. My mom's best friend is legally blind, and I have an amazing support system, so that really can impact patient outcomes. Because we got my mom's best friend that's legally blind on the phone, and they said, kara, if you don't get another surgery, even though the last one you had to be vented for, you couldn't be extubated, you will be blind forever. I don't care if you're scared. Buckle up, bugaroo. You need to do this. And so we did. But I also was prepared to die. And I know that sounds morbid, but to face what I was facing. I had to be prepared to die. So I always encourage people buy life insurance, right, make your will now, because it's not fun to be making these decisions right in the moment. So who knew you can Google how to make a will and make your will online in less than an hour. So that's what we did. I figured out who would take my pets, like divvied up my belongings, made a formal will online. You kind of have to sign away your life when you go into the OR and acknowledge that you are aware of the risks. I had my sister help me text message and anyone in my life, any ex, anyone that had ever been of significant importance of me and let them know what was going on so that if they wanted to pop by, if they wanted to send a letter, they could do that. So it sounds scary, but it was actually really, really powerful to know that I've made my peace with death. And I actually don't fear death in a traditional way. I fear leading a life nowadays that's aligned with my goals or my value system. I fear wasting time. I fear not being brave enough to raise awareness about what happened to me. But death itself is not something I fear. And Dr. Nance talked about this earlier. But some of what you're doing with a burn patient is just managing the infections and side effects and the pain that comes up, but you're not able to stop it entirely from progressing. Your skin is a large organ. So all of my skin had melted off in sheets. I could stick my hand up to my ear to try and touch my own face when I was blind and. And like, chunks of my skin would just come off in my hand. So one of the most painful experiences, obviously a lot of it was painful, but I didn't have to have any skin grafts, thankfully, because, like I said, it wasn't a traditional house fire burn. But I was wrapped in gauze and silver dressings. So I would be just completely naked on a table and there would be five or six or seven medical professionals working on me at once because their goal was to wrap me in the silver dressings just as quickly as they could. And meanwhile, I'm pumped with ketamine, fentanyl, morphine, all of these things, just to be able to sustain that, the. The pain.
- [35:29]
Dr. Nance
I want to give people a real sense of what this is like. If you have ever had a blister from wearing bad shoes and that blister kind of pops and it's that raw red part under the blister that hurts like a Mofo. That's her entire body. That's her entire body. Is that blister. And that's why burns. A lot of times they put people in induced comas because that is actually the humane thing to do. It's a safe thing to do, and it's a humane thing to do. Sometimes because of the pain level, I.
- [36:08]
Kara
Mean, you could apply a strong topical steroid and my whole body would be convulsing and I would be begging the nurses to off me because the pain was so intense. And this is where my meditation journey really started. This is where I was introduced to meditation. I learned how to do some lymphatic drainage type breathing, those deep belly breaths. And I used that alongside pain management. And whenever they needed to come into the room and apply kilitisol, I would have little stress relief balls that I would squeeze. We would push pain meds, I would do my deep belly breaths. I would go as far inside myself, farther than I ever had in my entire life, do everything to mentally, physically prepare for these moments where I was going to have some sort of procedure in the icu and still I would just be convulsing and screaming from the pain. Maybe this is in my imagination, but I believe that the walls and the doors are extra thick in the burn unit to kind of tamper the screams of the patients. And it's weird because the nurses were some of my only friends in that journey. So, you know, you have a 12 hour shift and there's periods of time where we are just chatting about their life and their boyfriend and getting so close to this person that I can't even see. I just recognize them from their voice. And then it's almost like your bestie's turning on you, or you have to let your bestie come and do this awful thing that makes you feel like you're getting crucified or something. I was screaming at them when they would do procedures at me to just kill me. To just kill me. And I know that sounds dark, but it wasn't coming from a mean or a dark place. It was coming from a place of I'm an animal that is suffering in a level that is inhumane. There is nothing that I want to do other than to be in less pain. And I didn't understand why they couldn't get my pain under control. I thought that I was not being treated fairly. But in retrospect, I was on fentanyl, I was on morphine, I was on a 247 ketamine drip, I was receiving heavy Duty, painkillers. The magnitude of pain is just incomprehensible. And from a physician's mind, they're thinking, this girl, all her skin has sloughed off, she's on steroids, she's sepsis, she has tachycardia. They didn't want to give me too many painkillers and push me over the edge and lose me, but I'm really, I'm thankful that I pulled through. I'm thankful to still be here. There are a couple of things that helped keep me alive. Spite and spite.
- [39:29]
Aaron
First and foremost, an amazing sense of humor there, Kara.
- [39:33]
Kara
And that's on trauma. But I mean, because so many of my senses were involved and I had kind of flirted with the other side, I hadn't officially crossed over, but I remember white light and kind of being started to pull through the other side. I have some PTSD from this experience. And they give you really powerful drugs when you're extubated and on a ventilator and stuff that affect your, your memory. So trying to recant this story can sometimes be like running through a corn maze. There's just certain scenes that play over and over. I'll never know the entire story, I don't think, but I just have these bits and pieces that I can offer you guys. And I think it gave me this kind of like six sense flirting with death, where I'm just very intuitive nowadays. Really, really tuned in. Extremely sensitive, empathetic. And I remember being able to feel it when one of my nurses had lost a patient that day, because not everyone on the burn ward pulls through. And I remember when they'd walk into my room and I could feel that they had lost someone. And I remember distinctly making a decision right then and there that I didn't want that to be me. I wanted to meet a different fate. I didn't want my nurses to have another burden of losing another patient. So I think that's one thing that helps people survive the ICU is you make a decision, you decide, I'm going to fight. And then I also had a good support system. It was really hard because it was the pandemic. So I was only allowed two visitors a day during certain hours, and the hospital was a bit short staffed. And since my mom was a nurse, she was the one every day that was there helping wipe the blood off my face, help me make it to the bathroom, all that kind of stuff. And when you're kind of flirting with death, teetering the line between this side and the other, you're aware of, like I said, of everything. So I became very aware of love. The company I was working for at the time had organized a card drive where I had received hundreds of cards. And so my sister used to sit next to me bedside and read these beautiful cards that people had sent me. So even though I was in this awful scenario, I was just so full of spite and determination, and I could feel abundant love all around me. And I had already faced death. I had already made my will. I had already had to sign the papers that you have to sign to go into the or. And I was like, not today, and here I am.
- [42:35]
Aaron
You prepared for death, but you chose to live.
- [42:38]
Kara
I think that's well.
- [42:40]
Dr. Nance
Kara, I want to ask you, because it's not lost on me, that during this entire time, you are blind. And can you talk about the moment when you are finally able to see and able to look at yourself?
- [42:59]
Kara
Yeah. So I regained some vision a few days before I was discharged. I had some glasses that they gave back to me once. Like, my stitches and everything healed. And for a lot of times, my eyes were just swollen shut, so I physically just couldn't open them. And once a nurse gave me my glasses, and I put my glasses on, and I don't know what I could see at, right, like maybe 2100 or something like that. It wasn't quite great. Everything was super, super blurry. But I could see. I remember waving a hand in front of my face and being able to see it. I remember being able to start making it to the bathroom a little bit easier. And it was an incredible, incredible moment. And the burn unit itself, I don't recall having mirrors. I remember going to the bathroom and the burn unit and thinking, this is weird. I can't look at myself. And I don't know why that is. I don't know if it's because they don't want burn victims seeing kind of how messed up they look. But the day before they discharged me, I took a step down from the ICU to a regular hospital room. And that did have a mirror. And it's actually a lot of work to get discharged. So you have to. Again, just like you have to decide that you want to live, you have to decide that you want to get discharged. So you have to be on board with proving that you can pee again, removing the catheter, proving you can pee right, proving you can breathe, doing a swallow study, doing a ton of physical therapy. I was getting shots in my stomach every day to prevent blood clot, So I hadn't been Using my legs a whole lot. So I kind of had to remember how to get my legs to work and then get my PICC line removed. Accomplish all of these milestones. And similar to cancer centers, burn units actually have a bell that you can ring when you get discharged. So it was December 23rd, and we told my family that I wasn't going to be out of the hospital anytime soon and they were going to have to have Christmas without me. I'm the youngest of five kids, and I have at least six nieces and nephews. So everyone was at home waiting around for me, and the nurses felt really, really bad that I had just fought death and was going to have to spend Christmas alone in the icu. So they said, I think you'll have to push, but do you want to get out for Christmas? And I said, yeah, I want to get out for Christmas. So December 23rd, I got to ring the discharge bell, cried tears of joy. I mean, it might have been more like a dry cry because my tear ducts burned off, but you know what I mean? And my friend Stella, who also has sjs, came up with that term dry cry. I love it. It's true. It looks like we're crying, but there's not always tears coming down.
- [46:12]
Aaron
But see, it's finding that humor in it. I know that it's a horrible situation, but it's so lovely that you found these little moments of humor within it.
- [46:21]
Kara
Big moments of joy. Right? I mean, that's the whole thing that's changed me about this experience is I have experienced now more heartbreak than most people have ever experienced in their entire life. But I don't know if I would take any of it back, because the magnitude of joy and love that I've also experienced now is equally matched. And once you know that life has more depth and can have more meaning and purpose to it, how can you just go back to your 9 to 5 and be satisfied with knowing that life could be less? You know what I mean? I don't know if I would change it if I could go back in time just because of the woman that I am today.
- [47:01]
Dr. Nance
So you get discharged, home for Christmas, and what I'm wondering is, we have talked to a lot of our guests who talk about whether they're post transplant or post big situation. And what happens is it is a really unexpectedly harder, longer, depressing road than they anticipated. And so I'm curious as to what your recovery process looked like.
- [47:33]
Kara
Yep, you nailed it. Me, me, Me, too. That's exactly what it was. I mean, this moment that I had spent a month in, on my deathbed, fantasizing about was here.
- [47:45]
Dr. Nance
Right?
- [47:46]
Kara
Like, I thought I was going to become Princess of Genovia. I had all of these plans. I was gonna, I don't know, own an Airstream ranch owner, own some acreage. Like I had put in an application to get a dog. I was like, things are looking up. Everything is going to be sunshine and roses. If I can just prove that I can get unplugged from all of these cords and tubes. And it was so bittersweet to be reunited with my family for Christmas. I mean, obviously, I was so thankful to be at home with them, but also, this is my first time coming to terms with that. I can't see fully, so I couldn't really even see them fully on Christmas Day as I watched them open their presence. And this was when the real work began. Because in the hospital, I had everyone to help me eat, walk, talk, think, medicate, now, schedule you. Yeah, all the things. Yeah, right. They gave me like a week or two worth of painkillers and a packet, but that's it. And no one told me what the road was gonna be like. I had to live with my parents for some time as they were just my full time nurses. I think I lost between 30 to 40 pounds because I still had so much esophageal involvement that I wasn't able to really eat anything but liquids. I was in immense pain. And you can't really just call up to the ICU once you graduate and say, I need some more painkillers. And I knew that I had a massive, could be fatal allergic reaction that could have been caused by pharmaceuticals. And then I still had to be having pharmaceuticals in my life, which I hated so, so much. So I just. I just fought. I just fought so hard. Maybe even harder than I did in the icu or just a different kind of fight where I had to start to learn how to use Siri more like. I had some eye function, but I only had a few minutes per day where I could really use my eyes. And then a few weeks passed after discharge. I'm living with my family is having to do everything for me. I'm missing my pets in my home back in Austin, Texas, and everything is crumbling before my eyes. My career, my friends, my capabilities, my finances. I mean, just. I had a house and I had a support system. But in a sense, I feel like I lost everything.
- [50:36]
Dr. Nance
Kara, I'll tell you, I did this TED talk called the Seven Stages of Misdiagnosis. And it's actually. It's on YouTube now. It is. It just came out. But one of the lines as part of the stage. Stage of depression and grief is that you grieve the life that you had, but you also grieved the life you thought you were going to have.
- [50:58]
Aaron
Yes.
- [50:59]
Dr. Nance
And those are both valid feelings, and they both take different ways of reconciling that grief. But I think it's important for people to understand that that's normal. That's part of the emotional framework of going through a misdiagnosis and a chronic illness.
- [51:22]
Kara
The greatest death I've ever mourned in my life has been a death of myself. Right. And I had to grieve. I had to go through that grief because how else could I step into Cara 2.0 and an alternate version of myself if I didn't more than what I originally wanted? So after about a month or two, I was able to move back home to Austin. So I got reunited with my pets. I have two cats. They didn't recognize me. I think I smelled different, look different, and I'm so thankful that they exist. I'm not married, no children, and they gave me something to return home to, and we were able to reform the bond. It took a bit of a team to get me back home and get me set up. It's really weird because you think about these things that you would never think about normally. Like, you never think, okay, the way I left my room looking this morning is how it's gonna look forever, potentially. Right. So it was kind of this untouched, messy room that I no longer knew how to navigate because my eyesight is basically just incredibly blurry. Like, I could increase the text size on my phone, and I could hold my phone up to my face. But even if I could open my eyes, I didn't want them open for more than, like, 30 minutes a day. My preference was to be in bed with frozen peas over my eyes because that helped with the swelling and the pain a little bit. So I would only open my eyes and use them very, very sparingly. It's weird, just free falling into blindness as opposed to progressively losing your vision. I'm like, oh, gosh. I don't know how to find anything in my email. Like, when I have these, like, five minutes where I can use my eyes. I became very aware of how precious time is. I had very little patience for things like robocallers or spam. And I started to hate all of the clutter and advertisements that you see in the world because I'm like, time is so precious. And I have these few minutes a day with my eyes and then I get inundated with junk. So it gave me this skill that I started developing for time is precious, use time wisely. I don't want to sit around wasting it at all. And I basically just went back and forth to the doctors a lot for like six months, six or seven months after the icu, I had a standing appointment with my ophthalmologist, my cornea specialist, where I could always have a same day appointment because my eyes were so fragile and the ecosystem was super, super vulnerable. So I had to do a lot of steroid drops. And at one point my eye pressure was in the 40s and I risked blindness from glaucoma induced eye pressure. And it was like, just because I could see a little bit today didn't necessarily guarantee that I was going to be able to see the next day, so to speak. And at one point, because I couldn't drive, because I couldn't see, I was stuck at home, very isolated because of the scars on my skin, I wasn't allowed to be exposed to sunlight. So I had like nine or 10 months where I never felt the sun hitting my skin. Had no friends, was just couldn't drive a car. I was just alone in a dark room. My only connection to the outside world was really going to the doctor's office. We enrolled me in white cane training. I had multiple eye operations where I had amniotic graft repeated on my eyes. And yeah, someone taught me how to set up my phone for someone that's visually impaired. They taught me how to get halfway around the block. All my muscles have kind of atrophied at this point because I've spent so much time being insure and laying in bed. And then I had a low vision therapist and I had Google. And so anytime I did have a few minutes of stable health, I was researching, I was getting on wait list, I was figuring out what are the most innovative, cutting edge things that you can do in this field to get better. And when things turned for me was when I finally got my eyes a little bit more stable. And that was because pros, which is a more sophisticated and customized version of a scleral lens. So people that have kerakatonis will wear scleral lenses, which is, I think an elongated cornea. People with maybe severe dry eye might wear scleral lenses, but it's the size of a nickel about, or it can vary in size depending on each person's Individual eye, but mine are pretty, pretty large, maybe slightly smaller than a nickel, but an oversized contact lens that is hard plastic. And my insurance paid for my initial set, but out of pocket they would have cost over $10,000. I had to go to several weeks of training to receive them. Because you have to use all of these solutions, they're considered a medical device technically because they have different use cases. But for me, they were able to increase my comfort and restore a lot of my vision. So once I get my pros lenses, that is the ticket to me being able to start physical therapy, finally being allowed to drive again, being able to get out of my bed. So it was a huge long period of time after the ICU where I'm bedbound, housebound. And this was another medical experience where expectations did not meet reality. Because I thought I was going to get my scleral lenses and boom, I was going to have my life back and be able to wear these bad boys. But it took months and months and months of me trying to increase my tolerance for getting used to wearing them on my eye. Because you kind of initially feel like you have these plastic frisbees suctioned to your eyes. And because of the Stevens Johnson syndrome, my cornea is covered in scar tissue and surface irregularities, kind of like the surface of the moon. So that's why I couldn't wear a traditional off the box model. So your regular scleral lens is like an Adidas shoe. And you know, I had the custom made Gucci's or whatever. I went through 20 or 22 pairs where they're putting a lens on me, examining where it's suctioning, how it's fitting to my eye, fine tuning it. And then I actually use these teeny tiny, like one inch tall plungers. Literally it looks like a baby plunger. And because these things are suctioned to my eye, I have to take a plunger and plunge my eyes. You know, they help with my astigmatism from all the scar tissue. They're bathing my eye with liquid continuously. And after 10, 15, 20 years of wearing scleral lenses, people can actually notice improvements in their acuity. So it takes a long time, but they're really, really miraculous, miraculous devices. Some people with Stevens Johnson syndrome, because of the pain and the sensitivity of the nerve endings on the surface of the eye, they opt for eyeball removal. And so people that don't even have any vision left because of the Stevens Johnson syndrome, may still opt to get scleral lenses because it is going to Improve their comfort and reduce their pain. So this is where my life really begins to turn around for the better. And at least for a little while. The first thing I did after I got my scleral lenses was I signed up for guitar lessons. I had a dream of learning to play guitar my entire life. I had bought guitar when I was in the seventh grade and I never actually learned how to play it. And once you're on your deathbed or when you're randomly unexpectedly blind, you go back to that kind of childlike state where you're like, what? What did she want? What did I really want? What was the point of my life? You have all of these existential moments. And while I was blind, I could not get the thought of me playing guitar out of my mind. And playing guitar and singing is like this very vulnerable heart opening thing. And so I started playing guitar and it really helped me have this ticket outside of the medical world where I thought that to heal, quote, unquote, within the medical system, I needed to be a good girl. I needed to go to every doctor's appointment. I needed to go to physical therapy, check all of these boxes. And that was going to get me to healed. And once I got my scleral lenses and picked up the guitar, it was like I was playing Candyland or Monopoly. And I. I got the. To take the shortcut back to go. Right. It was these stepping stones that let me imagine a world outside of one where I was just trapped and dominated by the medical world. And when I was continuously just going to doctor's appointments, that's a world that I had lost the ability to imagine because it felt very prescriptive and robotic. Some people have an emotional support teddy bear. I had an emotional support guitar and I wasn't really integrated with society at this point. You know what I mean? It was, it was scared little sheep vibes. Right. So. So I finally had something on my calendar once a week that wasn't a medical appointment. I got to go see guitar boy. Right. I had this just like young, full of zest, in his 20s, guitar teacher, where I would just go over to his house and we would play and wait.
- [63:19]
Dr. Nance
Is this an Eat Pray Love journey? Is that what's going on?
- [63:23]
Aaron
I would have totally different.
- [63:24]
Kara
I did have my Eat Pray Love moment. Yeah.
- [63:26]
Aaron
See in my mind, her had a really sexy guitar feature that she got to play guitar but then also have her art played.
- [63:34]
Kara
I mean, it's very, it's very intimate playing guitar. It's very, it's very vulnerable and Singing too, right? We were singing, so.
- [63:44]
Aaron
Found chicken. Found one.
- [63:46]
Dr. Nance
This turned into how Cara got her groove back.
- [63:48]
Aaron
You know what?
- [63:49]
Kara
Literally. Yeah, I got my mojo back. Got all the things back.
- [63:54]
Dr. Nance
All right, so we're. We're doing guitar lessons. It's make. It's bringing you joy.
- [63:59]
Kara
And I had dreamed of traveling, and I had been researching. I need to take some sort of trip. My therapist had really encouraged it. My family and friends were like, what does Mexico have to do with your physical healing journey? I'm like, everything. I really encourage anyone that's gone through something traumatic to travel if they have the means or capabilities. To travel is such a privilege. But it meant everything to me because it's showing me what I'm capable of. I've lost all of my faculties. Here is this chance to relearn who I am, what I'm made of. Here's a chance to get into another environment. And so I had to bring my emotional support guitar, obviously. So here I am with this, like, 1964 Gibson, this vintage guitar that had no business being on an airline. But I had been keeping it in my room. I had been playing with several hours a day. I cannot go anywhere without this guitar. So this guitar is coming, and I go to this little remote surf town in Mexico. And I think about that trip every day of my life. Every day of my life, I think about that trip. You get so imaginative when you're in the ICU or when you suddenly lose your eyesight. You just imagine all of these different realities and circumstances, both good and bad. And after being tortured for, I'd gotten sick Thanksgiving Day of November. And I first went to Mexico, I think, in August of the following year. So however long that is, like nine months or so of being tortured day in and day out. And here I was in paradise with my guitar. Just a totally different culture, a totally different language, a totally different everything. Everything. And no one here knew that there was anything wrong with me. To them, I was this gorgeous, stunning American woman where I had never felt more ugly and self conscious in Texas as I did after. It felt like my face was mutilated with burns and multiple operations. And I'm five eight, so I'm a little bit taller than the average standard height of a Mexican man. So they are just like all looking up at me. Heads are swiveling. This goddess has arrived. And I'm just hurt. Little baby bird, like, oh, maybe I should stand up a little taller. You're like, oh, okay, maybe I am someone. It was a small surf town with A lot of open mic nights. So the very first night I was there, I made friends with a local Mexican man that got me plugged in to the open mic scene. So even though I just was a total beginner on guitar that only knew three or four songs and a couple of chords, I got to perform on stage and bring my guitar and just felt like the belle of the ball. So this trip was a huge confidence builder. I began to hope again. I began to dream, call my parents up, hey, maybe I could have a really cool future. Maybe I am capable. Maybe I can do things. And that is so powerful. Once my mind was believing that I could do things again. What do you know? My body stopped ration out so much. It stopped thinking, oh, all we can do is replay this nightmare over and over again.
- [68:03]
Dr. Nance
Yeah, and that's my Anna's favorite line from my book. The most powerful drug is hope.
- [68:08]
Aaron
It's totally true. And setting yourself up for wins is how you get that hope. And I think a lot of people forget about that.
- [68:16]
Kara
Well, eventually funds ran out and flights were booked. So after several weeks I returned to Texas and it shattered my heart and reality buds. The stress got to me of trying to reintegrate into society. So I hadn't had a job in a long time. And this is the analogy that I've thought of to try and explain it to other people. The way sometimes inmates get released and if they don't have a good degree acclimation program into society, sometimes they wind up back in prison. I mean this is just what I've thought of to try and make sense of it. All in my brain is the stress would get to me. I started working out again and rebuilding my health and my life and the pressure really got to me and I started to feel really, really stressed out. Like I don't know, I don't know can I, can I get a job or like how much do I need to be working out? Do I, how do I make friends? Right? There were all of these things that it had been so long since I had to navigate and I had never had to navigate them in this body that I didn't know how to navigate. I was putting a lot of pressure on myself to work out every day. I was doing a ton of hot yoga and I was coming up on the two year anniversary, which brings a lot of flashbacks and can put you in a weird space. And I had noticed my hands started to stiffen up a little bit and guitar had been my lifeline. So I thought that I was developing carpal tunnel. And so I stopped working out. I quit playing the guitar. I went back to resting a lot and was like, surely my wrists are going to get better if I just rest a bit. And they didn't get better and in fact they got worse. And all of my body started stiffening up. All of my joints, my fingers, my toes, my arms, my knees. And I started to feel like the Tin man, where, you know, with a bit of oil, with a bit of practice and time, I could eventually move a little bit. But it was like trying to move a rusty hinge and just trying to straighten my arm all the way was extremely, extremely painful. So I went in and saw a rheumatologist and he said, we are going to get to the bottom of this. I know you've been through a lot and we are going to solve this mystery. I am going to stick through this with you. And as someone who is vulnerable, hurt puppy dog has been through a lot medically. That's music to my ears. I'm like, oh, gosh, you've got my back. Like, cool. When, when do I book a follow up? But he kept saying, well, your labs are coming back clean. You know, I, I think you're okay. And he had started me on Meloxicam, which is, I don't know, maybe like Advil or something.
- [71:32]
Dr. Nance
Anti inflammatory. Yeah.
- [71:35]
Kara
And I felt really gaslit medically because one of my flaws is I can get quite a quite attached to a doctor because it's hard to build that comfortability and it feels like starting over. And I'm like, oh, this person gets my story, they get my background. I'm going to keep betting on him. And so meanwhile, I'm rapidly deteriorating, so I am no longer able to get up from a chair by myself. My sister is an ot and I was living with her at the time and she was having to help me physically go from sitting to standing. I had to alter my whole wardrobe because I couldn't lift my arms above my head to get a sports bra on. So she, as an ot is helping me rethink my wardrobe. I live downstairs, my sister lives upstairs. And I tried to walk upstairs one day and I just ate it and fell down the stairs. I couldn't open a prescription bottle. I tried to open something that was glass, but I had lost all my grip strength. So I tried to use something to help pry this glass thing open and it had shattered and cut open my palm. So I am really painting this picture to this rheumatologist because I just want him to take me seriously. And I'm telling this rheumatologist, the blunt of it, I'm not sugarcoating anything. Like, I am falling down the stairs, I'm cutting open my hand. This is not normal. And I was totally inexperienced when it came to working with rheumatologist. He told me I was fine. So I'm like, oh, I'm fine. And rheumatology is notoriously hard to get into. So, yup, I had asked around in Austin and it was going to be like six or nine months wait. And then my father, my dad saving the day once again knew about a rheumatologist in Houston and says, why are you spinning your wheels waiting six to nine months to see another rheumatologist in Austin? I know a doc in Houston you can go to. And I got in to see this rheumatologist in two, three weeks. I walked through the door. She diagnoses me with rheumatoid arthritis within two to three minutes of meeting me. And I don't want to say that I doubted a doctor, but I looked at her a little quizzical, you know, are you sure you don't need to see some labs? You don't need to examine me some more? She says, no, I see your joints are stiff and you have swelling around all of your joints. Like you can see, my knuckles would puff up. It would puff up around my wrist. She could see that I couldn't really bend my hands and I had these little claw hands. And she goes, joint stiffening for six weeks or longer. That does not improve with rest. This is textbook rheumatoid arthritis. There's no doubt in my mind. Sure, we can get more labs, Sure I can look at your labs, but I am absolutely certain that this is what you have. And what I had was rapid onset seronegative rheumatoid arthritis. So seronegative. And I'm going to pause in a second and let Dr. Nance maybe explain this. If I'm explaining this incorrectly, it's too hard.
- [75:16]
Aaron
Yeah, let her do it.
- [75:18]
Dr. Nance
So rheumatoid arthritis and a lot of other rheumatologic conditions are usually diagnosed through positive lab findings. In the case of rheumatoid arthritis, it's usually a positive rheumatoid factor rf, but there are some other positive labs, like anti ccp, you can have something called a positive ana, which are a little more non specific, but they are usually positive in these cases. Now, in seronegative rheumatoid Arthritis. Your example before, about the rusty hinges, the squeaky, noisy, stiff hinges is a perfect example because think of your joints as hinges that are now rusted over. And so it's just really stiff, it's hard to move them. But in seronegative rheumatoid arthritis, there's no evidence of rust. Oh, and all they see is a hinge. And they go, your hinge is normal. There's nothing wrong with your hinge. There's no rust. And so that's how you can think of seronegative ra. But something that I have talked about before is a lot of physicians, before we had lab testing, they would make this diagnosis on physical exam alone. And what my mentors used to tell me was that you can solve 90% of all diagnosis through history and physical exam alone, which means listening to the patient's story and physically examining them. And that it really, we should only be using the lab work and the imaging to confirm what we already assume is going on. And unfortunately now. And part of this has to do with diagnostic criteria for insurance companies. Right. They're going to say, where's the proof? How can you diagnose this person?
- [77:16]
Kara
Exactly.
- [77:16]
Dr. Nance
Okay, so it's not just the doctors saying like, well, no, you can't possibly have this. There's multiple reasons why you may not be getting the diagnosis that. So kudos to that doctor for just using her own experience and her eyes to get you that diagnosis. Because what I tell women all the time, I go, you're coming in with morning stiffness in symmetric bilateral multiple joints. You have a rheumatological condition until proven otherwise, not the other way around. Right. You should not have to prove that you have something. It should be that you have a rheumatological condition until we figure out what if it's something different or it really.
- [77:58]
Kara
Is nothing that better have gone in the book.
- [78:01]
Dr. Nance
Also, people may not understand is the difference between osteoarthritis and rheumatoid arthritis. Osteoarthritis is ho hum arthritis. When you think of like, oh, elderly people who get arthritis, they need the knee replacements, they need the hip replacements. Their fingers look kind of knobby. That is osteoarthritis, which is a, we call it a productive arthritis, meaning we're making too much bone and we're making what's called. So you're making bone versus rheumatoid arthritis is an erosive arthritis. It is eating away at the joint. So what we see in, in rheumatoid arthritis is Joint collapse, the joint is being eaten away like moths eating at the joint surface. They're eating away the cartilage and so on. X rays, the pattern is different. And this is again how every disease has their own unique pattern. Osteoarthritis, we're looking for big osteophytes. Rheumatoid arthritis, we're looking for erosions. Psoriatic arthritis, there's something called pencil in cup where your finger joints looks like it's a pencil inside of a cup. So there's a lot of nuance that we can tell beyond just the positive lab findings. So this is just for anyone who's been in your situation, which I can tell you right now is hundreds of thousands if not millions of women who have been told your labs are negative and dismissed. That is just simply not the case that you don't have a potential rheumatologic condition.
- [79:41]
Kara
Right. And so the con of it coming on so quickly is that damage was happening at a rapid rate. But the pro is she's falling down the stairs. There's something clearly off with this woman that was physically capable and able a few months prior. And I think this is oftentimes why it takes women years and years to get diagnosed if they have something that's progressing much more slowly.
- [80:12]
Dr. Nance
So you get a diagnosis.
- [80:14]
Kara
I got a diagnosis.
- [80:16]
Dr. Nance
Yay.
- [80:17]
Kara
And you got two. Yeah. I think the reintegration into society was a major stressor on my body. But to be honest, I think it had started percolating right after the icu. My hips always hurt, which everyone said that was from being bedbound so much. I always felt like I had the flu. Like ever since I got out of that icu, I never totally felt at home in my body anymore. But that was kind of muddled by the fact that I had this major life threatening episode because people are like, no shit. You don't feel well, girl, of course you're not feeling too hot. Right. So it's easy to brush off. I have almost no family history of cancer, but I have a really strong family history of autoimmune disorder. So, like distant relatives with. I don't know how to pronounce this one, but ak like anglosynold spondylitis.
- [81:16]
Dr. Nance
We had a guest, we had a.
- [81:18]
Kara
We had Sjogren's psoriatic arthritis. So oftentimes, Right. We have that genetic predisposition position and then we have a major life stressor like I had and. Right. You get that onset like I did.
- [81:34]
Dr. Nance
Yeah. And that we have talked about this before, I do believe that for most of these autoimmune conditions is that we have a genetic predisposition with an environmental trigger. And that for a lot of the different autoimmune disorders, you may have one, but you probably have five. And they're just different manifestations of the same dysregulation that's going on in your body.
- [81:59]
Kara
Right. My brain thinks that there's a fire in my body when there's not a fire anymore. And there really was a major fire when I was in the icu, so to speak. So the wires are just getting crossed. And it's hard to convince my body that it's not under attack. It used to be really, really devastating disease, and it still is. But there's been a lot of medical advancements. So some autoimmune diseases can be managed more effectively with stress management, diet and exercise than rheumatoid arthritis. Rheumatoid arthritis, There is no choice but to take pharmaceuticals, at least from my understanding, until you're at least in remission, then maybe it can be managed with lifestyle factors. But I need something called dmars, Disease modifying antirheumatic drugs, which are heavy duty drugs, but the hope in taking them is that you can actually alter the trajectory of the disease.
- [83:06]
Dr. Nance
I love that these DMARDs have completely changed the trajectory of rheumatoid arthritis. But I trained under some of the last surgeons who, if you asked what an orthopedic surgeon did 50 years ago, I would bet 90% of their time was taking care of patients with rheumatoid arthritis.
- [83:27]
Kara
Wow. Okay. Really wild.
- [83:30]
Dr. Nance
So now we are to the point where there are so few people coming in with advanced stage rheumatoid joint destruction that the new surgeons don't even know how to do the procedures because they just don't have the experience of operating on patients with rheumatoid arthritis. And a lot of the. For example, the hand implants for rheumatoid arthritis, they were, they were designed for patients with rheumatoid arthritis. They're called silicone implants. We can't use them in regular people or people who have other types of arthritis because those implants are made for so low impact. Because people with rheumatoid arthritis were basically just bedbound. So we were like, okay, we'll design something that we can take away your pain, but you can't lift anything heavier than a pen because they were made for a population who was so crippled. So the fact that we can say to you, I hope that you have a future without needing a joint replacement.
- [84:34]
Kara
Wow.
- [84:34]
Dr. Nance
Is a miracle. Although, Kara, you're in the position where the treatment is actually one of the triggers for your problems.
- [84:43]
Kara
Yes, yes. And I was so grateful to have the affirmation of a diagnosis because once there's a diagnosis, a plan can be formed. But also my heart was completely shattered because I rebuilt my life brick by brick, only to be back in this position. I had learned how to live like a pretty naturopathic kind of holistic lifestyle, so to speak, where I wasn't on any pharmaceuticals right after pharmaceuticals potentially almost cost me my life. And then I had to take pharmaceuticals in the recovery process. I had learned how to just manage everything with yoga, therapy, nutrition, all of the freaking things. And biologics or DMARDs are no joke. They're heavy duty drugs. And so I was terrified. My heart was shattered. I got diagnosed in December. My first biologic was in January. It was Humira. It took me a couple days to give myself this Humira injection because I just let, let it lay around. My hands are shaking. I finally took the injection and then I quickly rejected the Humira. So I built up neutralizing antibodies and my body fought it off. So fast Forward the next 12 or 18 months and I have now tried seven or eight biologics. My body has fought all of them off, rejected all of them. I essentially have this hypersensitive body from the Stevens Johnson syndrome. So my nervous system and my immune system is just so conditioned to viewing everything as an attack that it doesn't know how to not view something as an attack. And you have to remember, prior to the Stevens Johnson syndrome, I was a pretty healthy kid with zero operations. And then in January we tried Plaquenil, which is also called hydroxychloroquine. And I had so many physicians tell me they thought it was going to be milder and was going to be my miracle. And I took three half doses and I took these three doses every other day. So I tried to do a really slow and conservative titration up and by day six, I had a full body rash and I shed all of my skin again. And I was in the hospital on IV steroids and Dilaudid. So I was just once again brought to my knees by the universe, bedbound, losing all my skin. So I've been in this cooling off period. I'm on day five of a drug called Sympone R and it's my very first time trying an infusion. So I was able to be infused with a biologic, as well as an antihistamine and some other drugs that hopefully, fingers crossed, I'm. I'm gonna have a different outcome. You know, part of me is still heartbroken that I'm not on a beach in Mexico playing guitar like I had hoped, but at the same time, like, there's just still so much fight in me left. And who knows, maybe I. This will be my miracle. And who knows, maybe I'll be one of the people that never has to have their joint replaced. I don't know what the universe is trying to teach me by being like, hey, here, almost lose your life to pharmaceuticals and then be given a disease that must be treated with heavy duty pharmaceuticals. But I know that I'm enjoying being on this podcast. I know that I'm enjoying leaning into advocacy and fighting for myself so that others don't have to fight so freaking hard. And I think that just because being on a beach in Mexico playing guitar was the plan that I had in store for myself, that maybe there's something bigger in store for me and I just can't see it yet.
- [89:08]
Aaron
I am positive that that's the case.
- [89:10]
Kara
Thank you, Kara.
- [89:12]
Aaron
I am positive.
- [89:12]
Kara
Thank you.
- [89:13]
Aaron
And, and I will say I have every hope and every good energy I have is put towards the. The dream that your resilience will lead to your recovery.
- [89:25]
Kara
Right.
- [89:26]
Aaron
And I think that to go Back to the Dr. Nance quote we always throw out there, the most powerful, powerful drug is hope. And you have shown.
- [89:33]
Kara
Absolutely, absolutely.
- [89:35]
Aaron
It is just how hopeful you are. And I'm so sorry. I'm so sorry. But also, you are taking everything in stride. You're doing the best you can. That's all you can do.
- [89:50]
Kara
We'll see. We're gonna have to have a podcast follow up a year from now, and I'll be dialing in from Mexico.
- [89:56]
Aaron
You know, I hope that that's the case.
- [89:58]
Dr. Nance
I'm going to take my. My favorite quote from the hills, but the rest is still unwritten from the hills. And we cannot, we cannot wait to hear the rest of your story before.
- [90:10]
Aaron
We get into discussing this, because this is a lot. And I cried multiple times during this episode, as I seem to do these days. I just want to remind everyone that stories like these are possible because you share them with us. So if you have a story that you'd like to share with us, please do not hesitate to send us an email. I'm going to try to do it this time. It's storieshemedicaldetectivespodcast.com Did I get it right, Erin? See, we can all learn and grow.
- [90:38]
Kara
We did it.
- [90:39]
Dr. Nance
Yes. And you know, I said, last time I was in LA and I got to meet so many listeners of the podcast, like, nothing makes me feel better to hear someone say, I see myself in these guests and my story is just like their story. And we talk about, you know, on this episode, actually, Kara gave us a lot of compliments about what we're doing here on the podcast and how, yes, it is a really interesting Dateline type mystery where we're trying to figure out and guess what's wrong. But I think what we are doing on a broader scale is really bringing some topics that don't get the airtime that they need to when it comes to the health care system. And, you know, what does health care look like for your average woman?
- [91:33]
Aaron
Yeah. And I want to give you some kudos. Not that I don't give you kudos every episode, but I want to give you some kudos for being here and doing this podcast as a doctor. Because I think this wouldn't be as valuable without you providing that medical insight and demystifying a lot of things that I thought I understood. There's a lot of things I learned. And to just hear the true system behind the veil, I guess, is helpful, I think, for us just to understand how to navigate our own conditions better with compassion and understanding for doctors as well. Because we're all just people on this planet trying to do a good job.
- [92:10]
Kara
Right?
- [92:11]
Dr. Nance
Well, I will tell you, probably the single most important thing that a doctor can do is to continue learning. Because not only do technologies change and diagnosis category changes, but if we are stuck in our old ways of thinking that actually can do more damage, then good. And so what I love is that I learn something new every time I learn something new when I am researching for these cases every week, I learn something from the guest who educates me on the latest treatment. So just the more that we can spread awareness and as I love to say, cross pollinate all of these really good ideas and conversations, that's really my mission for this podcast and I think.
- [93:06]
Aaron
You are doing a wonderful job. I would also say what I think is really interesting about this episode specifically is we talk a lot about, especially in kind of the first half of the story about that when you have a gap of knowledge. So when you're in like a rural community, when you don't have maybe 80 different people to talk to you about something, maybe you have 10, there is a loss of knowledge in that. And I think what's really interesting about this guess is that if her dad wasn't a doctor, would she be alive? I mean, genuinely, maybe not, because according to what they originally saw, they did not think it was the condition it actually was. Again, I don't want to shade doctors because that's not the goal of this, but I think it's a great example of what you were saying earlier is that doctors will only know what they know. And the great thing about globalization and technology is it does provide access to a lot more information. But doctors also have to be given tools and means and even time to use those resources.
- [94:14]
Dr. Nance
Yeah, absolutely. I mean, I mentioned it just a little bit in the podcast, but the new social media app I created called Feel Better the Culture whole goal was to democratize access to credible health information. And right now, I actually think that for most conditions, the answers are hiding in plain sight. Like Kara was screaming Stevens Johnson syndrome, but no one was receiving it. And it wasn't until she did a facetime with her dad that someone who was removed from the situation could recognize it and see it. And so I find, again, utilizing these tools, whereas when I was in training 15 years ago, if I went to sneak a peek on my phone to Google something, I would be shamed. And now they are building AI into all of our record keeping and documentation so that we are now becoming the fact checkers of AI. Who. They're the ones catching these diagnoses first.
- [95:23]
Aaron
Well, I think we need to get rid of the perception that doctors should be all knowing. I think that is. Why is the word escaping me right now, but bad. I think it's bad. That's not the word I wanted to use, but we're just going to go with it because I think it is getting in the way of good medical care. Let doctors be human, let them be imperfect like we are, but allow them. By allowing them to be imperfect, we're able to move forward towards better health care.
- [95:50]
Dr. Nance
Yeah. And we have to recognize that for every gain, there is a loss. When before the implementation of really like radiology X rays, CT scans, MRI, doctors could diagnose people through their physical examination. We could listen to your heart and know you have this type of brewing, this type of murmur. I could listen to your lungs and be like, that's a crackle. That's stridor. Now we say put them in the CT and I'm going to diagnose them with pneumonia or whatnot. So we as a field kind of lost that physical exam. I would say those skills. But to be honest, the, the technology was better at diagnosing the majority of things. And so I think that's what we have to understand with AI and integrating new tools is that it can't just replace things. We still have to have, in my belief, the doctors to be the interpreter and the synthesizer of this information. But if you're going to tell me that AI is going to catch more breast cancer on mammograms than a radiologist two eyes, I'm going to say that should be included on everyone's scan. Right now, how it is, is at least in my radiology practice, you have to pay an extra $60 to have to use AI to go through your scan. So I had actually dinner with one of my friends who's in that radiology practice and I said, why wouldn't everyone opt into that? And he goes, aaron, not everyone can afford that. And I was like, you're right, $60 is a big deal. This is where we have to understand what type of systems are we building? Are we building them equitably so that everyone can have access to these life saving technologies.
- [97:53]
Aaron
So in a past life, I actually built technology and I built algorithms. And the quote, I always tell people, some people are very scared about technology and they don't want to use it. And there are two things I like people to remember about technology. If you are not part of its creation, it will not serve you. So if we want technology to serve doctors in the best way possible, we need to have them using and inputting how those services help them. Otherwise it will be decided for them and it will woefully fail. And that has been repeated time and time again through cycles of technology from the most basic systems. And that involves involving different types of doctors of different colors, of different backgrounds of different experiences, from rural doctors to more metropolitan doctors. It will not serve those communities unless they are included. And the second thing I will say is that with every technology we gain weight. We also, we gain good and we gain bad. And so my biggest fear when I look at medical treatment with technology is that we should never expect doctors to operate solely on information from a technology. It should always be a supplement. Because the bad is, is that we are asking a non thinking, non logical, non, you know, rational being. We were asking a system that sees everything in black and white to make decisions that are often in the gray. And a computer is often not capable of understanding the gray. So the biggest detriment that this technology that we are having in the future will have on our society is a loss of operating in that gray. And for medicine, I would say most people with complicated issues live in the gray.
- [99:40]
Dr. Nance
And I'm supposed to be the expert, but you're like the stealth expert here. I feel like you've had nine lives and each episode I get to know a little bit more about.
- [99:52]
Aaron
Well, this is the one. This literally was my career before being a creator. I built technology in this area and I was a product manager. So I've seen these things come to fruition in other sectors. And I just hope for the medical sector that they learn from some of the mistakes that other maybe sectors had. Anyway, I think there are a lot of things to discuss. And we spent a lot of times talking just about rural medicine and the help of technology and outside. But then we need to get to the next part of this is. And again, we're jumping around a lot of stuff. There's a lot to talk about, guys, and I feel like we're not going to be able to address everything in this episode. But one of the things that I think is really interesting, and we talked about this with Simone, she talked about that depression after surgery where you lead up to healing and then you heal and then you realize life kind of sucks because you've had to let everything go your apart. This week, Kara had mentioned her apartment. She didn't leave it, thinking she wouldn't be back for nine months. So there's probably rotted food in the refrigerator. The place is probably a mess. Like, you come back to this life that is less than ideal. And even further, that creates another layer of stress, which unfortunately in this situation led to another illness. And I think when our body attacks itself, it is very good at finding new ways to take that on. And I think a lot of people with chronic illness are dealing with not just one situation, but multiple. And I think it's something we should just talk about a bit so we don't forget to acknowledge that, because I don't think we've really talked about that specifically before.
- [101:35]
Dr. Nance
Listen, I tell people if you have one autoimmune disease, you have five, they just haven't been diagnosed yet.
- [101:42]
Kara
Because that is my story.
- [101:45]
Dr. Nance
Because in my experience, the autoimmune disorders are really just different manifestations of a dysregulation of your body systems. Whether if it's going to come out through your nervous system in this way, if it's going to come out through your joints in that way, if it's going to come out through your skin in that way, you know We've had people put tons of rashes and stuff like that. So in my opinion is that there is an underlying trigger, whether or not, you know, you are genetically predisposed, plus, you know, environmental triggers that have caused dysregulation of your systems, and that these autoimmune disorders are just naming that dysregulation, how it's expressing itself in different parts of your body in different times of your life.
- [102:41]
Aaron
You know what's funny about autoimmune illnesses that I think about all the time is they really stem out of your body trying to do a good job. And it's just like, listen, guys, just like me, my immune system's an overachiever. I feel like sometimes it's helpful for me to think about it that way so that I'm less angry at my body. She's just trying real hard, right? She's trying really hard. And yes, that manifests in me being stuck in bed and sometimes crying. But if I can try to not be at war with my body, that is the best thing I can do. Because even as Kara kind of mentioned throughout this episode is like, the less stress you have. Like, stress is a huge antagonist in these situations. So I don't know if that'll help anyone else, but trying to just recognize that it's my body actually trying to help me, but just well intentioned. But she's getting it wrong, right?
- [103:33]
Dr. Nance
Yeah. And we, we briefly alluded to this earlier, but the use of the term autoimmune and thinking about it in terms of your own body attacking itself, the more and more I think about it, I just don't even really think it's the proper description of what's going on. And I like to think about it in terms of homeostasis, which is like a big word, but all it means is that your body is in balance. And so for your, you know, example, your immune system and a balanced immune system is when there's no outside virus or bacteria coming in, it's quiet. When the virus and bacteria comes in it, it does its job. And that's homeostasis. And I think that what we're really trying to figure out is why is your body's homeostasis off? And that is the real mystery. Well, I think in honor of Kara in this episode, if everyone could share this episode with someone who doesn't have the same illness that you have, but has a different type of illness, who you think would benefit from listening to this show, that would be the greatest compliment that you could give us.
- [104:53]
Kara
Today.
- [104:54]
Dr. Nance
So thank you everyone for listening and.
- [104:58]
Aaron
See you next week.
- [104:59]
Dr. Nance
Foreign.
- [105:06]
Aaron
The Medical Detectives is a Soft Skills media production produced by Molly Biskar Sound designed by Shane Drauss. If you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical.
- [105:19]
Kara
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.