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- [00:11]
Host 1
This was a wild episode because I feel like we ended with more questions, which I don't think has ever happened before.
- [00:20]
Host 2
Yeah, you know, I, as I said in the episode, I have the literal cheat sheet for our guests, what their parents conditions are, but it's more of like a skeleton. And so I am always still my brain is working and thinking through things. And what's interesting in this episode is we discuss other potential diagnoses. And I just want to make clear that the purpose of this show is really to give voice to the patient's storytelling of their medical journey and, but that sometimes, you know, real, real life connections happen and so you'll hear us talking about other, you know, potential avenues for, for her to research. But I, I do want our listeners to understand that this is not me giving medical advice to people, but rather me sharing my own experience with listening to a lot of people's stories and trying to help make some of those connections.
- [01:23]
Host 1
I'd also say in this episode, just for anyone out there who might be triggered by this, there is some light conversation around eating disorders. So if that's something that makes you feel uncomfortable or that you just don't want to be exposed to, this might not be the episode for you. Now, before we get into the episode, there is one thing that I wanted to let you guys know. We are going to be off next week. We have some pretty exciting things happening and we'll be back in action the following week and ready to share some more medical mysteries with you.
- [01:52]
Host 2
That's right. And for anyone who just can't wait to get their story fixed, I am making my little announcement about my book that is ready for pre order. So thank you guys so much for your support. It is little misdiagnosed with HarperCollins. It comes out on June 3rd and I can't wait for you guys to get your hands on it.
- [02:20]
Host 1
Now with that, let's get into the episode.
- [02:27]
Host 2
Hi, Hailey. Welcome to the Medical Detectives.
- [02:30]
Haley
Oh, thanks for having me. I'm really excited to be here. Love the podcast.
- [02:33]
Host 1
We're so excited you're here.
- [02:36]
Host 2
Well, Haley, I like to start the show off with going down a trip down memory lane. And I have a daughter who's nine years old. So can you bring us back to a day in the life of Haley as a nine year old?
- [02:51]
Haley
Yeah, that's it. I like this. I like going back in time because this has been an ongoing issue for decades. And so Hayley, at nine years old, man, life was a dream. I didn't know it then. You Know you're nine years old, there's no perspective. But I lived on a 10 acre farm with my little brother and my dad and my mom and in sunny Okanagan in beautiful British Columbia in Canada. And I mean, idyllic I guess, is all you can say, right? And then there was a situation in terms of the work my dad did was, was closing out. So we had to decide what we were going to do and as a family made the decision to move in a very, very different direction, all the way up to the Yukon territory here in Canada, which is like the opposite end or top of Canada. So very cold, different climate, but also very beautiful. The town that I lived in is called Watson Lake and the biggest community from there is about eight hours away on each side. So we started making plans over a number of months as my dad's work was closing down, to be able to make that move.
- [04:01]
Host 2
Now, living out there, I imagine it's pretty isolated in terms of medical care. Did you have any medical issues during this time?
- [04:13]
Haley
No. So, I mean, absolutely. Very, very remote. Amazing doctor. There was one doctor in the. He was also the sort of ad hoc vet. He was all of the things. But you know, I don't think that my family, just knowing my mom, we probably would not have chosen to move there if anyone in our family had sort of ongoing medical conditions just because of like access. Right. Unless it was well managed. But all this being said, two months before we actually made the move to go up to the UConn, my mom suddenly, very suddenly and unexpectedly passed away. I mean, like I mentioned, we were a very sort of quintessential idyllic family. Growing up on a farm and chickens and cows and horses. And mom was a stay at home mom until we both were school age, my brother and I, at which point she drove the school bus. We had this really kind of storybook life. And then when she passed, for one, I mean, my dad and her were absolutely in love and it was very sudden and unexpected. So, you know, just totally. The world shook. Like my dad is now taking care of two little kids and we are moving in a couple months. I remember my dad saying at one point, you know, like walking in the grocery store and just sort of being like, I don't even know what these kids like for breakfast. Like, I don't like he did. He was very involved with us. I think he shortchanges himself a bit there, but like your whole world turns upside down, right? So I was 11, we were about to move in two months and it was Already all planned. The house was bought. Like, we were all excited and.
- [05:55]
Host 1
Yeah, so that's a lot of change in a very, very short amount of time.
- [06:01]
Haley
Yeah.
- [06:02]
Host 2
How would you characterize the way that you processed your mom's death?
- [06:10]
Haley
It's hard to say because there probably were changes that were happening due to moving to an entirely new place when you had lived in the same spot since you were a baby. So, you know, there was a smaller school, everything was different. I was definitely a little bit nerdy, and, you know, it was. It was hard to fit in. So I think there was maybe a shyness that developed. So there was probably a lot of criticism, self criticism happening at a young age, too. Just, like, making sure that I'm not adding any stress to my dad, whether that be consciously or subconsciously, just recognizing that, like, we're all in this really awful situation. And I think, you know, you don't. You definitely don't want to bring issues up. My dad was really good at being inquisitive and making sure that we were okay and having that open communication. But. Yeah.
- [07:02]
Host 1
And how old were you again? Was it 11?
- [07:04]
Haley
I was 11, yeah, when she passed away. So by the time we moved, we were moving up there on my birthday, my 12th birthday. It was really hard and a lot of change and just my mom's death and the move would have been a lot for any kid. But then, of course, on top of all of that, the first sort of medical thing happens. So, yeah, it was my dad and my brother and I. We're having dinner. And, you know, I mentioned a little bit about just how things changed in terms of, like, my dad caring for us, which he did an amazing job. But we kind of joke that we had a repeat of, like, shake and bake, chicken and stir fry and spaghetti. Like, it was kind of a repeat of the dinners that he made. But steak, it was probably a weekend night when he wasn't working, and we would have been barbecuing. And I'm sure it was like steak, potatoes, and something green. And I took a bite of the steak, and I just all of a sudden could not breathe. And it was an immediate sense of, I can't breathe. I can't breathe. I can't breathe. And I ran to the bathroom, and I tried to drink water to see if it'll just push it down. And sometimes it will, sometimes, if I'm lucky. But lots of times, the majority of times it won't. I would say 90% of times it won't. And then you just have to wait for it to shift. And it shifted in my throat when I got to the washroom. My dad, of course, is like, what is wrong? And scared, and my brother's scared. And they're standing at the doorway of the bathroom, and they're looking at me. I'm kneeling on the floor and all. Like, I'm breathing. And then I start talking, and he's like, okay, you're okay. It's gone. And I'm like, no, it's still there. It's still in there. And he's like, okay, we'll just give it a minute. Drink some water. And every time I tried to drink the water, it would just come right back up. And I tried that for hours. It was like four hours, I think. And finally my dad was just like, no, we got to take you to the hospital. This is crazy. What is going on? And I had. Had allergies, so I don't remember at any point us talking about, like, is your throat swelling up from. Because I wasn't also eating anything that was known to be a trigger. So I don't think that there was any concern that I was having an allergic or asphyxiation. Like, there was nothing like that. It was literally like, I choked on it, and it stuck in my throat.
- [09:23]
Host 2
And it's literally blocked the point where you can't swallow. Nothing will. Will go down.
- [09:29]
Haley
Nothing at all. No, it's just like. And, you know, you try to drink the water because most. I think most people, like, if you get something kind of stuck there, right, and you drink the water, but it's then that feeling of asphyxiation comes back, too, when the water is pooling there until it comes right back up, and then you have to spit it back up. So you have to be really careful about how much you put down there.
- [09:49]
Host 2
So we. We call this occluded, meaning that. Occluded, meaning that the entire space is blocked. It's not just that there's something stuck. If you're telling me that you can't even swallow your own spit because it's pooling, that means you have occluded.
- [10:05]
Haley
Yeah. And that. I'm glad that you use that term, because when these things happen, I get so thirsty because I can't drink any water, and it won't. Like, even if I could take a small sip and it would go down, that would be great. But that doesn't happen.
- [10:19]
Host 2
Yes.
- [10:19]
Haley
Yeah.
- [10:20]
Host 2
And I. I have never heard of some. I have heard people. You know, you get, number one, you may think, like, oh, it, it went down the wrong pipe. Right, That's. I think a lot of people have that feeling. But that is when food or water goes into your trachea, the lung system versus maybe you, you know, you didn't chew something quite well enough and it's too big. And so it's like p. Painfully going down. That's more of like impaction. Like that's a big piece that's trying to make its way down. But usually it doesn't mean that it's like completely blocked. So if you're telling me that literally your spit is regurgitating, that means you've completely blocked the tube.
- [10:58]
Haley
Yep, exactly.
- [10:59]
Host 1
So, okay, so you go to the.
- [11:01]
Host 2
Hospital, you are having a spit cup.
- [11:05]
Haley
Yeah, yeah. So we go to the only doctor in town and he just thinks that I didn't chew well enough. I'm a what, a 12 year old kid. And it's like you choked on some steak. How many times has this doctor probably heard this, seen this? Especially up where we live, everyone's eating moose meat and deer and whatever. So he's like, okay, well, you know, how long has it been? Whatever. He's a great doctor, by the way. And I remember the doctor putting a little bit of marshmallow. For some reason. They have marshmallows on hand. I don't know, maybe it's for this kind of thing, choking incidents or something, to see if something's wrong with the esophagus. But he gave, he gave me like a half a marshmallow or something and told me to just keep it in my mouth to see if it would melt. And he wanted to know exactly what, what we were just speaking of. Was this an impaction or the occlusion, I guess is what he was probably trying to determine. Because if I was able to have this marshmallow goofy eventually slide down my throat without coming back up, then maybe it will eventually go down the stake. So of course the marshmallow does not go down. And he's like, okay, well we're just gonna have to get that out. And what we're gonna do is put a tube up your nose and it'll go down your throat and into your esophagus. So I can push it down into your stomach. Whatever is in there, I can push it down into your stomach. And I'm very scared, but I'm also kind of like, oh, well, I'll probably be put under. Like, I'm not going to know any of this is happening. He's like, no, like you're Going to swallow the tube while I put it up your nose. So he brings out this tube. And this. This doctor, he's great, but he's a bush doctor. He deals with a lot of rough stuff. And I swear the tube, the tubing was probably about, like, the size of my pinky finger. When I was 12, I was, like, gonna hurt. So gets me this big cup of water with a straw. And he said, as I'm putting this tube up your nose, I want you to swallow, swallow, swallow, swallow, swallow, because it'll help the tubes swallow. And he puts a whole bunch of Vaseline on the end of the tube. And my brother, his horrific recounting of this is because when I was swallowing the tube, he was standing directly across from me so we could look eye to eye at the foot of the bed. He was standing. And. And I did as I was told. But of course, as that tube hits wherever. I don't know. I'm not a doctor, but the spot between your nasal cavity and your throat where they connect your sinus area, it hurts, right? So I start screaming. And my brother said he remembers seeing the edge of the tomb, the end of the tube moving down the back of my throat as my mouth is open and I'm screaming. And that's this horrific, disgusting recounting of it. And I'm like, that he would have been nine. And I just feel so bad.
- [13:59]
Host 2
Terrifying. And just. Just for the. The audience to understand, because you may be like, why would someone do this? You know, awake or as someone who's performed a general surgery internship. The reason why we do that is because you have. Starting in your nose, a tube can go one of two places. It can go down the esophagus or down the trachea.
- [14:20]
Haley
Right?
- [14:21]
Host 2
We want the tube to go down the esophagus. The opening is the same. But so the reason why we want you swallowing the water is because when you do that, that act of swallowing protects the trachea. So it goes down the opening. The open tube, which is the esophagus, it guides it. Correct. It helps to guide it. So no one likes putting in an NG tube because it is. It's uncomfortable. But you either talking or drinking water or swallowing through the process helps the tube go down in the right tube.
- [14:55]
Haley
That's awesome. I see. I didn't know that this whole time either.
- [14:59]
Host 2
So. So the doctor is placing the NG tube in hopes of dislodging the piece of meat. What happens? He.
- [15:07]
Haley
Yeah, he. He can feel it when it starts to hit it. He pushes it down and I'm good. I drink some water, it can go down. I feel fine. I'm happy. He pulls the tube out. That was the grossest, disgusting, most disgusting feeling. And like, I'm sure I was crying a bit and whatever, but so relieved. Right. And so we just jammed it with.
- [15:29]
Host 1
A stick down your throat.
- [15:30]
Haley
Just jammed it with a tube down my throat, yeah. And said, you not need to learn how to chew better. Of course. Right away. Because of course.
- [15:39]
Host 1
I'm just kidding. I'm sure he was lovely.
- [15:42]
Haley
He was lovely and. But I mean, 12 year old steak, I get it, you know? Yeah, I get it. It's. Yeah. After that, that kept happening. I would say that. I mean, it must have been at least once a week, but it was really rarely as serious as that first time. Like once a week something would get stuck. Stuck. But maybe just for like 10 minutes. And sometimes not even 10 minutes. Sometimes it's like taking a big gulp of water and then this like feeling of it being stuck in your throat. But then it goes down and then I'm relieved and then I'm like, okay, I'm gonna go on about my day. Right. And then after that first visit, after that it's kind of like, well, nothing's as bad as that. So it's like I feel lucky. I'm like just going about my day. And I think hearing the doctor say to chew your food, that was in my head, like there was that thought process that, oh, maybe I just need to chew my food better. Maybe I do need to just pay attention. And it's very hard to remember, but I do remember feeling like if I'm not getting it stuck so bad that I'm choking by the toilet for hours, like it's not a big deal, which is crazy. And it would happen on things like rice. Rice is a major cult. I think that was probably the next thing that I choked on actually was.
- [17:03]
Host 1
Like a piece of rice.
- [17:04]
Haley
Like just like a mouthful of rice. Like starchy things are kind of a trigger. So like potatoes, rice, noodles. Yeah. I definitely was a lot more careful with certain foods and I think is when I started avoiding certain foods too. Like, I just knew chicken is a bad one, steak is a bad one. And with noodles and with rice and potatoes, not so much. But with noodles and rice, they're eventually going to disintegrate and break down usually. So you just have to give it time and then it'll go. But I didn't have to go back to the hospital for a little while.
- [17:39]
Host 2
But you had Never had problems eating steak or chicken or rice or noodles before.
- [17:44]
Haley
Not that I remembered. I mean, who many. How many times? Maybe I got something a little bit caught or something and didn't pay attention. But the thing is, I had extensive allergies. Like, horrible, horrible, horrible allergies when I was a kid. They were identified when I was probably around 4 and, you know, the whole pricking the back with all the things. And I was allergic to everything. And my mom obviously was a very good custodian of making sure that I was not eating things that I was allergic to. And that's another thing, too. If my mom was still alive, I don't think it would have taken me the decades it did to get a diagnosis, not to give my dad any this credit. Like, I'm not saying that whatsoever. I think that there would have been me being more vocal, for one, and then just my mom checking in more about it and paying more attention. She just would have had. She was the type where she would have been like, no, we're gonna figure this out. And I also didn't tell my dad. I wouldn't tell my dad every time I choked. Like, I would just. If it went down, I wouldn't bother saying anything. Why would I say anything? Because I think I didn't want to be a burden. And I also just felt like this is my fault. I'm not chewing well enough. So I just have to get better at that. And in the meantime, I should just keep it to myself. I was embarrassed about it too. Right.
- [19:08]
Host 2
Well, I was going to ask if it ever made you self conscious, like.
- [19:11]
Haley
In school so much. Oh, my gosh. Like, well, first of all, I just like newer kid there. I was geeky and. Yeah, no any attention on me. Like, anything to get attention away from me, you know? So if I was actually having it where it was kind of stuck there for a minute, I did exactly what they say not to do. And I wouldn't tell anyone. I just go to the bathroom.
- [19:34]
Host 2
I will. I will say this because this is very important for especially every woman who is listening to this episode. More women die of allergic reactions because they are embarrassed and they go to the bathroom by themselves and they end up having incidents because they're alone. So if you ever feel like something is happening, you're having swelling, you're having itchiness, you're having anything. Do not go to the bathroom and excuse yourself. You need to be with someone.
- [20:08]
Haley
Yep, that's right, everybody.
- [20:10]
Host 2
All right, so you are having multiple incidents. When is the next time that you seek medical attention.
- [20:18]
Haley
I had to go to the hospital in the same town in the Yukon when I was probably 14 because it was shortly after my dad. So my dad got remarried and I was 14. It was like the week of when I turned 14 that they got married. And this would have been the fall or close to the winter time because it was like a town hall. My dad was involved with the city committee and stuff. And I remember it because it was a small town and not very many fun things happened. And they were going on this date and there was a big dinner in a gala and they were dressed up and it was all nice. So I can remember it. And I'm pretty sure it was steak than two or chicken probably that's the second worst culprit. And I choked and you know, I'm trying desperately to get it out. And I'm 14, I can't drive. So they ended up having to drive me to the hospital. And I felt so bad because of this, you know, their night. But it was great because I think it was the same doctor or at least we were able to tell them what to do. Whoever was on call and it was out in no time, you know, knew what to do and, and it was fine. But again, like just chew your food better, like okay, whatever.
- [21:35]
Host 1
And I think just they didn't know how often it was happening really at this point.
- [21:40]
Haley
Exactly.
- [21:41]
Host 1
You weren't telling them?
- [21:42]
Haley
No, no.
- [21:44]
Host 1
Gotcha.
- [21:45]
Haley
And all throughout this time I'm starting to get the patterns right. So I'm starting to get what triggers it and what is worse and what's going to definitely make me choke and what isn't. And it's around 14 that I decided I was vegetarian. So I went vegetarian. And I mean we are living in a town of like a thousand to twelve hundred people in it and not very many options for grocery store. And bless my stepmom, 14 year old decides in the middle of nowhere that she is going to be a vegetarian. Like that's tough, right? And she was fully supportive and never made me feel bad about that and I am very grateful for it. And I mean we had a grocery store and they were great at getting things in at people's requests and stuff. But the reality is it's not always up to them because a transport truck might flip on the highway or be like tied up for days during a winter storm. It's like who knows, right? So I'm sure it was probably difficult sometimes. But it did help though. It really did help. Like chicken and steak. I Can pretty much guarantee every time I'm going to get some sort of. I have to be so, so careful. And. And then I started recognizing that, like, potatoes and bready things and all of those kind of starchy things. So I just. I think I started just making sure that especially if I was out or not at my home, then I would be making sure that I'm not. I'm just avoiding certain things so that I'm not tied up near the toilet trying to get this out for hours on end. And that went on for. I mean, whatever went on for the rest of my life. But I. I figured that out and then 16, I move out and back down to the Okanagan. So I move back down to where I lived prior to my mom dying. And I was moving up there and I moved in with one of my best friends, our family friends, and they had a space for me, a room for me. And I finished high school down in the Okanagan and remained a vegetarian throughout high school and after the age of 16. And I think I probably only had to go to the hospital like once or maybe twice to get the tube, but again, I'm going to a new hospital where they don't know about this and I have to tell them. I remember explaining to the ER nurse like, this is what you have to do. And they. They did it, which I was really grateful for. But, yeah, it was, you know, having to explain. And then they're like, I remember that nurse actually saying, what? Like, have you got this checked? What's going on? And I'm like, well, no, I don't know. And I mean, I'm living on my own essentially at that age. And so I certainly wasn't going to be making any sort of an appointment to go to a specialist to try to figure any of this out.
- [24:22]
Host 1
Did you feel kind of like a burden because.
- [24:24]
Haley
Oh, yeah, for sure, for sure. Especially when I moved in with my. My friend's family there. They were great. They've known me since I was a kid, but, yeah, it sucked. And then I think I moved out when of their place when I was 17. So from 17, I was just living with other kids, essentially. So it was tough. It was really, really tough. Like, embarrassing and hard to explain and not something that I always wanted to risk explaining to people unless I had to. But then when I had to, it was because I'd had an episode. And then that's just sort of weird and embarrassing and I didn't want to be an attention seeker, but it was embarrassing and I was always just so nervous that it was going to happen in public. There were times where I thought that I would be able to manage it with a cup of water, like a couple gulps of water at a restaurant. And I think there's been like three times where I've had to, where it's come up. I, I took a little bit of water where even if it's there, I can usually get to a washroom to, to, you know, spit it out before it comes back up. But there's been at least three times where I couldn't. So I'd have to either put it into another cup on the table or spit it out near my bag or like, it's just absolutely awful. It's so disgusting to sort of describe that to me. It's just normal and it is just the water coming up. There's nothing else coming up with it. But it's like that's horribly embarrassing. And so being in social spaces, you're hyper aware and then it makes you have that anxiety. And I know that it's not my fault, but it's like everybody in the room doesn't know and even maybe the people I'm with don't know. And I also didn't know what it was. I mean, at this point I thought maybe it was allergies somehow or maybe it was anxiety. But no doctor had ever been able to give me any answers. So I didn't know what to say to people when it did happen. It was really, really awkward to like how to navigate those conversations at a young age.
- [26:27]
Host 2
And at this point, the professionals are telling you make sure you chew your food better.
- [26:34]
Haley
Yep. Every time. Every time.
- [26:36]
Host 2
But you in your head or you're like, I can chew this food fine. Like it's not my chewing.
- [26:43]
Haley
Yeah.
- [26:44]
Host 2
So you know that it's not your chewing.
- [26:46]
Haley
I know it's not my chewing. For me, it always comes back to the rice. Like, I know rice can kind of be sticky and get into a little ball, but like, come on. And I definitely think it would probably be around this time that there was commentary about it possibly being in my head or like it's some sort of anxiety related thing or it's some sort of stress related thing. And then to look back, that was certainly enough years out where I could look back and associate it with indirect correlation to being very, very close to when my mom had passed. So it's like, oh, well, that's interesting. And I was also exploring different ideas of spirituality around then and energy. And I worked in A tattoo shop, that was my job. I had a little bit more of that alternative lifestyle. I was embedded. Yeah. So there was definitely around this, that, around this time where I would be more open to the idea that, oh, you know what, this might just be me. It's an energy block. It's an, it's my throat chakra. I thought it was my throat chakra for years. Like on the road, I'm like, oh yeah, it must just be my throat because I was quiet and I kept quiet and I didn't speak up for myself. Like, no, I'm not kidding, I legit did.
- [27:59]
Host 1
Like, you know what, it makes sense because I think, you know, as women, the first thing we hear when we have an illness is that it's, it's something to do with our anxiety. Right.
- [28:09]
Haley
It's like, and I am a naturally thin person. My mom had a condition called Marfan's, which is what, what she passed away from. It's a connective tissue disorder and it's like tall, lanky, thin people. So it's always pretty tall and skinny. And I think that there was an optic from the outside world. Well, I know there was. There's. I've gotten comments, snarky little comments along the way of life and just sort of the assumption that I don't eat enough or I maybe have an eating disorder or. Yeah, so there, there was that layer too.
- [28:46]
Host 2
Well, because you're, you're publicly gagging all the time.
- [28:49]
Haley
Well, that too.
- [28:50]
Host 2
And I just can't even imagine as a child you are self managing a choking condition. Right. You are doing your own trial and error, your own food trials, not under the guide of a doctor. Do you feel like to the outside people treated this as a psychiatric condition?
- [29:15]
Haley
I think at different times in my life, yes. Yeah, yeah.
- [29:19]
Host 1
Do you think people thought you had an eating disorder?
- [29:22]
Haley
Oh, yeah, definitely. I think that there has been people over the years and times over the years and if I didn't know them enough, there's probably people who, if they, if I cross their mind at any point, maybe they associate me with that or they think of. Yeah, I'm, I can guarantee it. Just some little comments like in workplaces and like you said, I. Like what, like what Aaron said, like you're publicly gagging all the time and you're absolutely right. So, you know, at the teenage years when you start to realize body awareness and body shame and the biases that we hold and stereotypes and just like all of the things, all of the stuff that people think and even my own Ingrained bias about certain things. Being aware of that. I'm like, okay, well, I am publicly gagging, and I'm skinny. And people probably think that it's just an excuse to not have to eat or to puke or whatever. Yeah. And I must say, I've never, ever puked. I don't have a gag reflex. So, yeah, I've never. I. So that was something I learned through this because there's times that I can't get it out, so I have to go to the hospital, but there's times that I can get the food out, and sometimes it'll come up a little bit, but there'll still be some stuck there. And I can't do the gag reflex to get it to come back up. I'll have to wait for that stuff, after a certain point to just go back down. It won't. It won't. If it's in a certain spot, I can use my muscles to get it out, but I cannot. Nothing will activate my gag reflex. Nothing.
- [30:48]
Host 1
One thing I'd like to just say in here, because I think. Because we have talked about a really sensitive subject that, you know, is triggering for people. I think it's a good time to have just like, a little PSA that this is a great reminder that somebody's body is not the. You cannot really judge their health or what they're going through as simply as what you see. And that's why, whether it's a bigger body or a smaller body or a short body or a tall body or whatever is going on, you as an outsider, do not have the right to jump in and offer your medical purview. And I think this is a great example of something that does. To someone who does not know you, who does not spend time with you, could look like an eating disorder. So I just think it's important to say it's a great example of someone that is. We've talked about it a lot in bigger bodies, but I think this is a good example of someone in a smaller body who's also faced judgment for the way their body looks and some preconceived notions based on other medical things going on. And I just think it's important to highlight that because it's not one body type that this affects, and you just don't know. You just don't know.
- [31:57]
Haley
Thank you for. Thank you for saying that, because it is. It's a huge. It was a huge component of my mental thought process. Like, I was aware. I was aware. And it's stressful and I think anybody who is experiencing any sort of medical condition, whether that be mental or physical. Exactly what you just said. Nobody has the right to. To be judging or speaking out of, turn on that. It's very damaging.
- [32:27]
Host 1
Yeah.
- [32:28]
Host 2
So you are living by yourself primarily. You are managing your condition. You go to the ER periodically when you can't manage it yourself. What is life now like as a young adult?
- [32:42]
Haley
Pretty much the same. Except of course, we've got all of these other factors compounded on onto it that we just kind of spoke about. So more responsibility. And certainly there were times in my life where it just wasn't my priority. Right. Like, it just wasn't my priority to think about these things. And I think I was getting to an age where I realized that if anyone was ever going to kind of fix this, it was myself. Now, like, if I have to. If I have to make a doctor's appointment, if I really want to, but do what do I even say that I don't chew my food enough? Like, I don't even know where to start. Like, I didn't feel like I had a good case to go into a doctor's office and say anything about it. And when I would go to the er, I just wanted to get in and out and just be like, yo, just put the tube up my nose and they would do it. So that happened sporadically and then, you know, choking here and there. But also this was when I was kind of, maybe more of like a spiritual Wooey type thought process. And like, okay, I mean, it's like my energy and like, I need to deal with this. And really that was. Just went on like that for, for years.
- [33:52]
Host 2
And I think the other point that you bring up, which we had actually our last guest, is the, the danger of things becoming the new normal. Right. And so for you, your new normal was, well, I just choke every time I have a piece of chicken when that is not normal. That's never normal. But because you got through that first episode and nothing horrible happened, you got lulled into this sense of, well, this is my new normal and I'm just going to figure it out. And I think, you know, I'm a little bit surprised that because you were going to so many different places that someone didn't say, like, wait, you've had this done at five different ers and really raised the alarm bells because I do feel like sometimes the fresh set of eyes are like, like, that's not normal. Right. And they kind of break that pattern of like you're. You're the new normal. But it sounds like for you, you just kind of accepted that this was you.
- [34:56]
Haley
Yeah, it really was just my normal. That comment is. It resonates with so many of the guests on your podcast. And each time I just go, oh, I get it. I get it. I feel so bad for them when they get to that point, too, because I remember how that felt, where it's just like exhausted, Just exhausted. So it's like, what am I gonna say? They're not gonna, like. Like they don't care. It's just like, you get to this place right before apathy where you're. You're just done. You just don't, you know, it's not going to make a difference. And really, it didn't really dawn on me until now that the majority of the. The nurses who ever saw me in the ER were male nurses. And I never really correlated this. But maybe they just saw this kind of thin chick come in and they can't see what's wrong with me. They are just taking my word for it, and I'm telling them what I need. And who knows? Maybe they're just like, let's just get this hypochondriac out of here. It only takes two minutes. I go along my merry way. Maybe they.
- [35:53]
Host 2
Because there's never any proof, right? You're not coughing anything up. You're not. There's no X ray.
- [35:58]
Haley
Yeah, that's right. They never did X rays. There was one time where a piece of chicken, part of the chicken came out while I was there in the er. And I remember the guy going, oh, okay. And I'm like, yeah, you just gotta put the tube down my throat. And he did it.
- [36:12]
Host 1
So I just have this mental picture of you, like, so laissez faire, sitting on a little bench, being like, okay, here's what you gotta do, guys, like directing a football team. You're gonna take the tube, you're gonna shove it down my throat. The thing is gonna pop out, and then I'm gonna head out. Okay, let's go. It's literally it. I just feel like if I were a doctor, I'd be like, man, she's really got this down. Even if you didn't tell them that this has happened before, nobody wants that. Nobody wants a tube down their throat.
- [36:44]
Haley
I mean, well, some people do, and I guess that's where sometimes. And you see all kinds. I'm sure doctors see all kinds in the er, Like Munchausen, not byproduct.
- [36:56]
Host 1
I was gonna say, like, I don't Know who wants. Whose kink is having a tube down their throat. But then I realized there are people who, for some reason or another, wannabe sick, which is. Yeah, a whole other world.
- [37:10]
Haley
Yeah. So who knows what the optics were.
- [37:13]
Host 1
Yeah.
- [37:14]
Haley
So I think I'm probably at this point, I would have been about 27. So I'm living up north. I've moved, I'm living in one place for the longest I've lived in a while. So I'm pretty stationary again, though still very, very small town. And again, really good doctor. And. And I had an episode, went in, they did the tube, whatever. But he this time says, maybe you should go for a scope. Okay. And this doctor is like, yeah, I think we should send you to somebody to get a scope. We can't do it in our town. So it's only like a couple hours drive. And they were asked to scope me and look for certain indicators. And what the general consensus was over the years, kind of with myself, my own self, and then talking to this doctor who referred me for the scope, was that there must be some deformity in my esophagus. This is what I was convinced about because it always felt like it was in the same spot. And like, I'm like, there's got to be like a deformity or something.
- [38:21]
Host 1
Okay.
- [38:22]
Haley
So I don't know how scopes work, but I'm a strict.
- [38:26]
Host 1
Well, yes, exactly. Stricter.
- [38:29]
Haley
A stricture.
- [38:30]
Host 2
A stricter, which is like a narrowing, like a physical narrowing.
- [38:35]
Host 1
Oh, okay.
- [38:36]
Haley
But they do that scope and the results come back normal.
- [38:40]
Host 2
How did it feel to have a test that just is normal?
- [38:46]
Haley
Disappointing. Like, so disappointing. And I think it was just like, what the fuck is wrong with me? Like, what is wrong with me? Because, and to be fair, you know, I didn't know then what I know now. And I think I probably would have really grilled for the details of that report, what exactly they were looking for. But again, like, this is the first time that I've had a scope at all, so I'm not really thinking of what there could possibly be that they were looking for. And I would Google things once in a while, but nothing was ever really coming up. I'm just like, what am I gonna do here? This is just exhausting. And it wasn't like there was an increase in the amount of times I was going to the hospital or that I was choking. So it was just like, whatever. It's just the same.
- [39:42]
Host 1
Anyway, I'll deal with it.
- [39:43]
Haley
Yeah, there was no increase. There was no decrease. So Whatever. New normal.
- [39:47]
Host 2
How many times are you going to the ER over the next couple of years?
- [39:51]
Haley
I think, because I wasn't eating meat as much, and I was really starting to get diligent about what I was eating. I wasn't going, like, for the first while, it was almost, like, once every year, a year and a half. And then I think it was, like, to the point where it was like, every two to three years where I could manage it. And I remember, like, honestly, at one point thinking, like, I could probably teach myself how to do this myself. The tube and the swallowing. I was like, I could just figure out how to do this and be able to fix this myself. And I was like, no, I don't want to shove the tube up my nose. It's really gross.
- [40:28]
Host 2
You overruled your impulses.
- [40:31]
Haley
Yeah, I did.
- [40:31]
Host 1
Thank goodness for that, because that sounds. That sounds like, not a great idea.
- [40:39]
Haley
So it was just ongoing. And I think for me, it's like, because it was just the new normal. But I remember key moments. So, like, when I got married, we. Beautiful roast chicken dinner for all our guests with roast potatoes. I didn't even eat anything. I think I had some greens, but I was like, there's no way I am choking today. And going, no, it is not happening. So, like, I just didn't really eat very much stuff.
- [41:04]
Host 1
Not today, Satan.
- [41:05]
Haley
Not today, Satan. And just those kind of things, right? So it became more and more. More evident to me, particularly when I had a family, like my little stepdaughter. She's 14 now, but I remember she being, like, three, and she's like, are you choking, Haley? Like, nose? Like, she would just be like, oh, Haley's joking.
- [41:24]
Host 1
Like, you've clearly gotten too comfortable with this, right?
- [41:27]
Haley
Yeah, it's like, it's like, every night. And, like, really, I do. I can honestly say I choke a little bit every day. Like, something gets stuck in my throat every single day. And that is including now, like, it. Something will get stuck in my throat at some point during the day, every day. Unless I was on, like, a smoothie diet for something or Which I'm not. So it's just. Yeah, so it was those things, right? Realizing that when I'm on a road trip, I am getting, like, smoothies, and I don't want to choke in the car while I'm driving down the highway. Like, just things like that on planes. That's a little scary, too.
- [42:03]
Host 1
RIP Road trip snacks. So sad. Such a loss.
- [42:06]
Haley
It's just like.
- [42:07]
Host 2
Well, I don't know. It robs you of these shared experiences, you know, with others and your family. I mean, to not be able to have your own wedding food.
- [42:19]
Haley
Oh, and also ruining people's birthday. I have ruined people's birthdays. I shouldn't say ruined, but, like, I've had to leave. I've had to sit at a fancy dinner where I've had the occlusion, and I can't drink any more wine and I can't eat any more food for the rest of the dinner, which is not only rude, it's embarrassing. It's a waste. It sucks. I'm sitting there, I'm hungry, and I'm just like, this is horrible. But then if it shifts to a certain spot and I'm trying not to salivate, and I can kind of hide the fact that I have to, like, let my spit go somewhere, I can sit there for some time until it's like, okay, then we can leave. But there's some times where it's too early off, like, early enough in the festivities where it's like, I can't, so I just have to leave. Or if we're at a home or something, it's a little easier because I can just be like, explain. And then I can go into the bathroom and try to, like, just wait to get it out. But the. The longest was at a friend's wedding weekend, and we were all in really fancy RVs, and it was really nice, but I was in there for four hours until it finally went. Like, hiding in our bathroom for four hours, like, that sucks. And people are worried about you, and they're going, how is anything. There's nothing anyone can do. Absolutely nothing. So it's just like, damn it. It just ruins everything. Ruins everything.
- [43:32]
Host 1
Do you ever think about all that time you missed dealing with this?
- [43:38]
Haley
Yeah. Yeah. And I also think about, again, people's perceptions of me and if it ever changed dynamics or relationships or even work relationships or whatever, like, they just didn't tell you and I just didn't know. Yeah. Or going back to sort of just the optics. I remember there was a co worker, and then I remember it was the kind of like, the Christmasy dinner thing, and I didn't have very much stuff because those are all pretty much things that are gonna make me choke. I just didn't have much on my plate. Right. And they made a comment like, oh, you know, out of everybody, you're probably the person who should be eating more than that. It was one of those pivotal moments, too, where I was like, do I explain or do I just Not. And I went with just not. And I didn't have a diagnosis then. Now I'd be like, well, let's sit down. And I'm just going to give you a story about like. You know what I mean?
- [44:30]
Host 2
No, but that's one of the hardest parts about being misdiagnosed and undiagnosed is because you have no receipts, you have.
- [44:39]
Haley
Knowledge is power.
- [44:40]
Host 2
You have nothing. I say this all the time. Diagnosis is power.
- [44:43]
Haley
Absolutely.
- [44:44]
Host 2
So Haley, what happens when you reach your breaking point with this condition?
- [44:52]
Haley
It was just over two years ago. So I was making chicken soup, and I was starting that chicken soup in the morning and I ate a piece of chicken and it got stuck. And I was working from home that day and I was like, this thing's gonna go down eventually. And I'm thinking it probably happened around like 8 or 9 in the morning and I'm spinning all day and I'm like in denial. Right? Like, I'm like, it's not like. And it gets to a point where I'm trying to get this out of my throat. So there's like this sort of technique that you use where you're like. Like try to use your throat muscles like this to try to get it back up because it's pretty evident it's not going down. And you get to.
- [45:39]
Host 1
For those of you who can't see, this is terrifying. Look, if I. Somebody doing this, it's like like a half joke. Like, like, like it looks like you're both choking and trying to vomit at the same time.
- [45:52]
Host 2
Using your platysma.
- [45:54]
Haley
Exactly. Yes.
- [45:55]
Host 2
Thank you.
- [45:55]
Haley
I've read the word. And it is. It's like vomiting and choking at the same time so that you can do that.
- [46:03]
Host 1
And it felt awful.
- [46:04]
Haley
Oh, it's like. It is. No, it is. It's terrible. It's so counterintuitive. Like it's just lodged there. So after. After about four hours that usually it's pretty sore if I've been actively trying to get it out. And then there'll also be moments where eventually, when it's going on that long, your body is also trying to get rid of it. So it's involuntary where it's like, eh. But I had to come to my Jesus moment at like 8:00 clock at night. Like, I was like, this is 12 hours. I haven't been able to drink any water. It's been a whole day. I have to admit to feet. Like, I just have to. So I go to the hospital and this is the first time that I'M going to the ER in my community where I currently live for this. And I go. And I'm like, this has been happening all day, like, 12 hours. I'm really, really thirsty. I'm exhausted. You just have to put the tube up my nose and down my throat. And I also went really late to, like. I kept on putting it off, but I admitted to feed a while before that. But I'm thinking it's not going to be as busy. So I'm like, sweet. And they got me in pretty quick.
- [47:11]
Host 2
You're an ER pro at this time?
- [47:12]
Haley
Yes. Oh, absolutely. 100. And they did take me in pretty quick because I can't swallow, right? So it put me in a room pretty quickly. But when I tried to talk to them about doing the whole tube thing, they're like, we don't do that anymore. And I'm like, anymore. You know what I'm talking about? Like, yeah, people do get, like, impaction. We have done that before. Like, it used to be a thing. But they're like, we don't do that anymore. That's not a thing. And I'm like, well, what are you gonna do? They're like, well, we have cans of Coca Cola. And it can't be Diet Coke. It has to be real Coke, like normal old regular Coke. She's like, I'm gonna give you this can of Coke. You're gonna take little sips, let it sit over top of the chicken spit up in your blue little cup bag that they always give you as you go. But try to let it sit there because the Coca Cola will break up the proteins. And it may be. Eventually it will start to. You can start coughing some of it up as it breaks up, or it'll go down. And I'm like, okay, whatever. But I'm like, also, can I get an iv Because I'm like, super dehydrated. And they did.
- [48:15]
Host 1
You had to have water all day?
- [48:16]
Haley
Yeah, I couldn't drink any water, Nothing. So they did. And I'm like, this is so stupid. This isn't going to work. And this nurse is so nice. And she said, either way, we're gonna put in a referral for you to go see the endrogastronologist in the morning, the specialist. We're gonna make an appointment. Like, we're gonna set that up right now so that you've got a slot for the first thing in the morning in case it doesn't come out. But either way, you need to go see him if it does come out, like, whatever. And it started. It started, like, chunking up after about, I would say, three or four hours. I was there until 6 in the morning. And at 6 in the morning, it came out. It had been broken down enough, I guess, by this Coca Cola. And I'm like, holy. But this is going on, like, 24 hours that I've been awake just dealing with this, whatever. And so.
- [49:13]
Host 1
So the Coca Cola ate through the chicken, Is that what you're telling me? That's essential.
- [49:17]
Haley
I'm not a. Not a scientist or a doctor, but this is what the nurse told me. I was just so happy, though, and I felt conflicted about whether or not I was happy that it came out and I could go home and go to sleep, or if I was annoyed that I had gone that full amount of time with it lodged in there. And I wasn't now immediately going to see the specialist because it was like, ooh, maybe something. But I also was like, the specialist ain't gonna do anything. Like, nobody knows anything. It's. I've never had an answer yet, so I didn't really care. But.
- [49:52]
Host 1
Some people just don't even go, well, I wasn't.
- [49:55]
Haley
I wasn't going to go. They gave me the information, and they actually said they'll follow up, but I wasn't going out of my way to do anything about it. It's my family doc, my general practitioner, who I was able to. To receive as my general practitioner kind of out of a multitude of other various health things that I had going on. And she calls me the next day and she said, what the hell is going on? She's like, you've mentioned this to me before. You've never made it sound like a really big deal or anything, but this is crazy. You were in the er. What the hell happened? And I'm like, oh, explaining everything. She's like, you are going to see this specialist. And I'm like, okay, like. Like it's not that big of a deal, but I guess it is a big deal. And she started grilling me like, Haley, like, you. You kind of mentioned this about allergies, but, like, never, like, what? So.
- [50:49]
Host 1
So goes back to communication. The theme of this episode is communication.
- [50:54]
Haley
So she. Yeah, she grilled me and. And she gets me into the specialist right away. I think they actually ended up. They had already had the referral because I had been at the hospital all night. So I go for a scope and I meet the endo. Am I saying that right?
- [51:11]
Host 2
Gastroenterologist. Yeah, gastroenterologist.
- [51:13]
Haley
Gastroenterologist. I Don't know. He is amazing and his staff are amazing. It's just this small sort of specialist practice. And he explains a little bit to me, like, what he might be looking for before he does the scope. Explains, I'm going to go in, I'm going to take a biopsy. I'm going to be looking for these certain things, strictures being one of them. This could be something that is related to your history of allergies. It could also be something else. And I may put a balloon down, depending on what I see. I may put a balloon down your esophagus and try to dilate it a little bit. If it's narrow or because of these strictures, like, okay, yeah, whatever. So I wake up and I'm kind of out of it, but there was this, this word written at the top of this paper while I was waiting for my ride. And the surgeon, specialist, my amazing doctor, he's like, in and out, right? He's got a million patients, so I didn't see him, but I asked the nurse, like, what is this written at the top of this paper? And she's like, esophagenal esophagitis. Or I can never say it properly, but EOE. And she's like, that is what Dr. Munkowicz thinks you have, but you had a biopsy, so we don't know. Let's just get some of the. More of the results. And honestly, I'm the nurse and not the doctor, so he wrote it on there, though, so that is what he suspects you have. And I was just like, really? Like, he actually think, like, what? I've never seen this word in my life. And she's like, oh, well, I mean, he wrote on the report there that you have these strictures and there's this and this and this. And. And so the office will be in touch. And yeah. And so I went home. Of course, I'm googling everything and I'm just like, oh, my gosh. And it was amazing. Like, it's so amazing to know that there is. There is a name for it and there are ways to treat it.
- [53:07]
Host 2
But they were able to give you a diagnosis immediately after the scope?
- [53:12]
Haley
No, he was going to send the biopsy away, but he wrote on the paperwork that he thought that's what it was.
- [53:19]
Host 2
Okay. Presumed diagnosis.
- [53:20]
Haley
Yes. So I had this word that he had handwritten on the top of my paper and the nurse said, we think this may be what it is, but we're going to send the biopsy away also while he was in there dilated your esophagus by 2 millimeters with a balloon. I don't remember the exact measurements that first time, but for instance, the last time I went in about four months ago for dilation, he took my esophagus from 12 millimeters to 14 millimeters. And as far as I know, a fairly normal size in diameter for an esophagus is around like 28 to 30 millimeters.
- [54:02]
Host 1
Oh my gosh.
- [54:05]
Haley
I think it probably varies for people, but the reality with the narrowing in mind is that there are strictures. And so they identify that there were strictures, sent the thing away from the biopsy away, and then they concluded that, yes, I have eoe and I felt so validated and I felt so happy. The fact that there's a specialist who deals with this now in the city that I'm in and that I have access to that and I just feel so relieved. It just is. I don't know, it was. It has made me so happy to be able to explain to other people. And when I was able to tell my dad and my brother and they were so happy to know that there was something like. Because it's confusing for them too. And it was also terrific for everybody around me. Like it really is. So, yeah, I was really, really validated in this instance.
- [55:01]
Host 2
It's probably helpful for me to step in and give a little background as to what EOE is and yeah. Segment I like to call Dr. Nance's Med School 101.
- [55:13]
Haley
Yes, please, because I'll.
- [55:15]
Host 1
Please, because I'm confused. We love those.
- [55:18]
Host 2
I think the best way. And I've used this analogy before because we've had quite a few immune related conditions.
- [55:25]
Haley
Yes.
- [55:26]
Host 2
I like to use the analogy of the immune system being like the police and you have different members of the police and you have say like your, your neutrophils, they're like the beat cops and they're just walking around making sure there's no bacteria hanging out and taking care of them. Then you've got, you know, like the T cells and they're like special forces and they're going in against specific bacteria. Then you've got the B cells. They're more like the, like the investigators and they have like memory and they'll send in antibodies and then you have the eosinophils and they are like the HAZMAT team. They are the ones who deal with parasites now as part of their job as the HAZMAT team. They are just like spraying chemicals all over the place, right? To get rid of these nasty parasites. But in your case, you never had any parasites to begin with, and they are doing all of this spraying on your normal tissues and your normal cells. So in your case, your food allergens were acting as a trigger for those eosinophils to release all of these chemicals, which caused years and years of inflammatory buildup along the lining of that esophagus. And don't quote me, because I am not a gastroenterologist, but what I am imagining is your esophagus is not narrow because the esophagus itself is thin. It's because the walls became thicker, scarring and the. And the correct. And the opening became more narrow because of the years of inflammation. And probably every time you had a new allergen, it just set it. You probably have a local allergic reaction that probably also caused narrowing, you know, like, at the same time.
- [57:30]
Haley
Totally makes sense.
- [57:32]
Host 1
Also, can we please forever call it Aaron's Med School 101?
- [57:36]
Haley
Yes.
- [57:37]
Host 1
I love it. I love it. I love it.
- [57:39]
Haley
I love it, too, because I'm visual. And the way that you. You explain things in. In the way, like cells and all, like, you use the analogy of things like the police officers, the hazmat or whatever, it just helps me so much every time.
- [57:54]
Host 2
Well, because. Because as patients, you get a diagnosis and you're like, well, what does that mean? And we don't, as doctors, do a great job. One, we're restricted in our time, but also just to be able to put it in words that make sense and not. And everyone has. Every doctor has a different way of describing things. But I think using these analogies are just really helpful in understanding because you did not go through Biology 101. And so it takes time to describe a little bit of the background. But then if you have a little more knowledge, you're like, oh, then that does make sense. And now instead of just being told, well, don't eat chicken, now you understand. Like, okay, each time I have chicken, I'm setting off my own false alarm.
- [58:43]
Haley
Yep. Yes, exactly. Exactly. It was. I mean, like we said, diagnosis is power. And when I went home, you know, I'm reading everything after I see that word, right? And it was just. It was like the best, but it was also really sad. It's only been sort of recognized and started to be researched since the 90s. It's quite new. So the sort of general consensus was that it was a rare disease. But now the thought process is that it's actually maybe not that rare. It's Just that there's been a lack of information. But, you know, all through my life, when the doctors would say to me, you should chew your food better. You're eventually going to tear your esophagus. They would always say that, too, over the years. You're eventually going to tear your esophagus. And I finally did. So I had another episode, admitted defeat, went into the ER and it was Easter weekend. Remember, it was Easter weekend when it happened? Because I felt so awful that they had to call in the surgeon. And when she came in, she was called in sometime in the morning. I had been there overnight, and I thought that they were just gonna go in and take the. Again, it was chicken. Take the chicken out of.
- [60:01]
Host 1
You're never gonna learn.
- [60:03]
Haley
I love chicken fingers, too. Like, seriously, I'm a child. I just love chicken nuggets. But it's like, I could go back to being a vegetarian, but, like, I love chicken nuggets. I actually like vegan chicken nuggets. Too bad. Anyway, so they put me out to go in there to remove this thing. And then when I wake up, I remember looking at the clock and it was like, quite some time after, and I'm like, what's going on? And they're like, oh, you actually had a significant tear in your esophagus. So they had to go and put a stent in. So now you have this stent holding your esophagus together. Don't eat anything other than soup starting tomorrow. So, yeah, I had the stent in my throat, but, yeah. So then now I just go every, I don't know, four months and get a dilation. But it doesn't ever seem to stay. So the nurses there. Last time I was in for. For the balloon, they commented about how I'm the youngest person that they see on a routine basis. They're like, we usually. We don't see younger people this often and.
- [61:02]
Host 1
Right.
- [61:02]
Haley
It doesn't seem to stick. Yeah. Yeah, great. But it's like, I can tell that when things are starting to get stuck again, so I call and I go in, but it's like it always shrinks back down. Or like it doesn't. The dilation doesn't. Well, that.
- [61:14]
Host 2
But it's because they're not offering anything to actually get to the root problem, which is overactive eosinophils.
- [61:23]
Haley
Yes, exactly. And I do have a medication, Pantoprazole.
- [61:31]
Host 2
I think. Pantoprazole.
- [61:32]
Haley
Yeah. But it's for.
- [61:33]
Host 1
It's more.
- [61:34]
Host 2
But that does not. Correct. That just decreases. And to be Honest. That has nothing to do with your situation because that is for acid reflux. That is to try and prevent acid reflux.
- [61:45]
Haley
Correct?
- [61:46]
Host 2
Correct. So your problem is you have an abnormal infiltration of eosinophils into the lining of the esophagus.
- [61:55]
Haley
Yeah. So the things that I've seen as options to eliminate what could be major triggers or what could be making this worse. It seems like a big journey, and I don't know if it's one that I'm, like, willing to just take on my own. You know, it's a lot, it's a lot of work. It's a lot of diligence.
- [62:16]
Host 2
Yeah. I mean, the concern, Right. Is that your esophagus gets to a point where this is getting pretty technical, but when the normal tissue for the esophagus, it's interesting because it's technically smooth muscle. So again, getting into more of, like, the biology. The muscles that we, like, make a bicep with.
- [62:37]
Haley
Right.
- [62:37]
Host 2
This is skeletal muscle. It's called striated skeletal muscle.
- [62:40]
Host 1
Yeah.
- [62:41]
Host 2
The smooth muscle is the involuntary, the muscles that you don't think about the esophagus going down, your stomach churning, your intestines.
- [62:49]
Haley
Right.
- [62:50]
Host 2
It's made of a different type of cell smooth muscle tissue. When that becomes inflamed, that then scars. All right. And then it cannot perform its normal function of peristalsis, which is what it's made to do. And if that no longer becomes functional, then you're not going to be able to safely swallow your food. Right. And that's where I'm assuming probably the discussion or the preparations have been talking about potential need for feeding tubes. To be honest, I really thought where this was going was when you very first started and said your mom had Marfan syndrome, that you also have a connective tissue disorder, and that because of your connective tissue disorder, that soft tissue does not coordinate the peristalsis.
- [63:44]
Haley
Well, you know what? Maybe it's connected. I get checked from our fens, I get my heart checked, but I do have a slight mitral valve prolapse that they keep an eye on. From her eyes. Yes, yes.
- [64:00]
Host 2
Because your tissues are just too stretchy. So I thought you were going to have, I thought, you know, and guys, I, I'm cheating because I, I, I know what the end diagnosis is. Yes, but I thought that there would be other things involved. I, I thought that you would have more to just the histologic diagnosis of eosinophilic esophagitis.
- [64:23]
Haley
Well, well, Aaron, you like this? It's only been two years since I got this diagnosis. And you know, like, I had laser eye surgery and my. So like, connective tissue. Like, I had bad eyes since I was in grade three. And that's part of Marfan Suit, like all of these things. Right. And I only got my diagnosis a couple of years ago, but this, what you just mentioned, like, we haven't found the root cause. And I would like to get to the cause of this, like, to the root cause, but I need to start being vocal about the fact that that connection needs to maybe be ruled out or made, because it is. I've. I've obviously done all sorts of research on Marfan, and I knew it was a connective tissue disorder, but I didn't associate it with my esophagus.
- [65:02]
Host 2
Yes. And also I think because, you know, and again, I am not a gastroenterologist, so I don't have history with. With eoe, but to my knowledge, I have not heard someone having well over a hundred plus episodes of occlusion.
- [65:21]
Host 1
Okay. I just. Writing yourself, because that's what I like to do. But EOE 10 is enriched, which I'm assuming means happens more frequently in patients with hypermobility associated connective tissue disorders.
- [65:35]
Haley
Wow.
- [65:36]
Host 1
Including lowy diet syndrome, commonly known as marfum syndrome, type 2.
- [65:42]
Host 2
What?
- [65:42]
Host 1
And hypermobility variant of Eller Daniels syndrome.
- [65:46]
Haley
Holy smokes.
- [65:46]
Host 1
I think you need to look into that. That's all I'm going to say.
- [65:49]
Haley
Yep. And it's also time for me to go for my heart checkup, too.
- [65:52]
Host 1
So this is in a paper called Genetics of Esophilic Esophagy.
- [65:59]
Haley
This is like light bulb. And I. Absolutely. I'm so grateful. This is so interesting.
- [66:04]
Host 2
Yeah. I mean, just from seeing you on this podcast, Haley, and your little box on my screen, I could. I could tell that you have either some type of marfarin or connective tissue disorder from looking at your hands. And again, I am a hand surgeon, so I'm particularly keen on. On focusing on that. But to me, it doesn't necessarily mean, like, you know, this is the reason and this is the cause, but I do find that people who have a lot of, like, unexplained, weird things that they can't put their finger on and they don't know it very commonly ends up going back to that.
- [66:40]
Haley
Oh, interesting. I've never had a doctor, like, I've had doctors say to me, like, my arm span is 2 inches longer than my body length. There's like, all these, like, they've checked all the things. But I've never had a doctor like, for you to. And I know, I know what I see when I look at my hands too. Like, I know that's symptomatic of marfoid marfanoid indicators. And you are a hand surgeon, so I guess I should, I. But like no one has ever said that to me and to me it's obvious.
- [67:10]
Host 1
So.
- [67:10]
Host 2
Yeah, I think for a lot of people, they know deep down that there is something different. Not wrong, but there is something different. And for you, you suppressed probably that gut instinct for so long because you were dealing with way more than what a normal 12 year old would be dealing with. And so I think it's a story of survival. You did what you needed to do to survive and you made it. You made it.
- [67:42]
Haley
Yeah. Thank you. Thank you. I do, I mean, I just feel so happy now to know sort of what is going on in at least the beginning stages. Right. Like, I mean, it was decades that this was happening. It's only been two years since I've understood what it was. It's so nice to know what makes it better, what can help. And now I've got this new connection to it and I look at it as just an opportunity and more knowledge. And I'm just like this, I didn't expect this gem of, of info to come from this conversation. I thought it was just going to be like, okay, well, like this is it. But it's just absolutely. I think I'm going to be processing this for a minute. Like, I think I'm actually kind of in a little bit of shock and being able to advocate for yourself, but then using that. I've had to use my mom's illness as an advocate tool as well over the years and to be able to combine them both, like now I'm just like, okay, no, we gotta figure this out.
- [68:39]
Host 1
You know, I guess it leaves a.
- [68:40]
Haley
Little bit of a mystery now at the end. Like I don't have a definitive. It is an ongoing journey. There's stages to every journey too, right?
- [68:47]
Host 1
Yeah.
- [68:47]
Haley
And you learn more and more about yourself as you go and hopefully have people as part of your community, which that's exactly what you guys are creating. Like, it's amazing to. We wouldn't have had this conversation. I wouldn't have made this connection or it wouldn't have been made before me. It's just, it's so important to have people who don't make you feel like you're too much, like you're stupid or like you're Overreacting. So I just really appreciate that space and community you're creating here.
- [69:14]
Host 2
Thank you so much for joining us. This, this was an incredible conversation and I hope this is a jumping off point for you to even more discoveries and recovery.
- [69:26]
Haley
Thank you so much. Thank you so much. And keep doing the work you do. I just, every week I'm so excited to hear about somebody else's journey. So appreciate what you do.
- [69:37]
Host 1
Well, this only exists because of people like you. So thank you for supporting us and thank you even more for sharing your story because I am sure it's going to help people.
- [69:46]
Haley
I hope so.
- [69:52]
Host 2
I really love the perspective of this story this week because it's coming from someone who is experiencing medicine in a rural setting. And we have to remember that this is a real situation where you may only have access to one doctor, you know, who you are relying for so many different types of possible medical conditions. And, you know, I really, I loved how she was so appreciative and understood the barriers that could, you know, happen with just having one person be responsible for knowing everything about you. And I really thought it was a great episode to see kind of rural medicine in action.
- [70:35]
Host 1
Totally. And I think one thing we did also learn about when you are in a rural community is that the better you can be in communicating what you're feeling, what you're dealing with, the better chance you are going to have at getting a diagnosis. I mean, that's true for anywhere, but especially in rural medicine because at least gives them an avenue to research because they are covering so many different forms of medicine. I mean, she mentioned that this, this, this man was also the town vet, like he was doing people and animals. So it gives you a perspective on, on just how rural this was, which was, was fascinating, by the way. Imagine going to like a, a doctor with your dog and you both come back with results. One stop shot, one stop shop, for sure. I would say another thing that like, kind of was fascinating to me through all of this is how comfortable she really became with just dealing with it. And I think a lot of that has to do with the fact that, you know, when you lose a, when you lose a parent, when you're young and I lost my mom young, not that young, but younger, that's heavy. And there's a lot of trauma that comes out of that, you know, often unintentionally and sometimes you just don't want to be another problem that people have to deal with. Right. So you just get used to it.
- [72:02]
Host 2
Yeah. And, you know, she spoke multiple Times about how she didn't want to add another thing right to her dad's plate. And we talked about the new normal and how she felt like she could handle it. And this was just another part of her life. And you know, to be fair to all of the different doctors that she had seen, she had done a very good job of hiding, I think, how serious the condition was. Probably as a defense mechanism was downplaying her symptoms.
- [72:37]
Host 1
Yeah. And I think she eventually realized that. Right. But I think one of the hardest things about chronic illness is you do begin to feel like a burden if you constantly express every time you feel off every time something goes wrong, because it is chronic. It is all the time. It is going to happen frequently. And so I think it was the first time in one of these episodes where we really talked about someone who internalized that enough to hide that away. And I think it's hopefully somebody listening to this who might be doing the same thing will realize that in the long run it actually creates more issues because you never get a resolution or at least a hope of a prognosis if you don't share the information about what you're feeling.
- [73:20]
Host 2
And I hope if people can take one thing away from this episode is if you are having a medical emergency, do not isolate yourself 100%. Do not slip into the bathroom and hope to go unnoticed. That is a dangerous situation.
- [73:37]
Host 1
Yes, agreed. And I would say that if you are someone that suffers from chronic issues, find someone in your life who can be the non judgmental North Star. We often talk about this in the terms of doctors, but the people in your life are just as important. And finding that person that you feel comfortable confiding in when you don't feel good is not only empowering, but also could save your life.
- [74:03]
Host 2
Well, we'll see you in two weeks.
- [74:05]
Host 1
Until then, remember, we're taking a break next week, so you're gonna just have to like, maybe just re listen to an old episode. You know, why not re listen to.
- [74:14]
Host 2
Your favorite one, send it to your friend.
- [74:16]
Host 1
And if you have a story that you think should be on the podcast, don't forget to send us an email. I'm gonna ask Aaron what the email is because I always forget it. And if you're like me and always forget it, it is linked, so don't worry. But she's gonna tell you what it is.
- [74:28]
Host 2
It's Stories Themedical Detectives podcast dot com.
- [74:34]
Host 1
Someday I'll remember that. But for those of you who are like me and can't remember, it's always linked. It's always linked in the description.
- [74:41]
Host 2
Bye bye, everyone.