who is going to be sharing his experience. Dave is in Oklahoma City. He is a friend and a patient that he and I have established a relationship of medical care over the last year or two. But he has a really fascinating and long story to share with you about his EOE. So please join me in welcoming Dave to the auditorium. Good afternoon, everybody. So Dave, we'll start out by having you tell us when and how you were first diagnosed with EOE. So, Bill, you want me to run through the whole military thing? Absolutely. When you first learned about it and how you discovered EOE, that there was something going on? Yeah, sure. Okay, so we'll go back to the war in Afghanistan. The year was 2009 at the time. We were deployed into Afghanistan at the time. I was a commander at the time. I was the officer in charge of the air force. At the time, I was the officer in charge of a unit. And I was the commander at night. We used to do a lot of night operations. Another friend of mine at the time, who was really the actual squadron commander at the time, was the day commander. So we were in the chow hall, if you will, at around six o'clock at night. We would always meet and go over some critical operations that had happened that day. And then we would plan a little bit for what was coming up that evening. And then I would take the night shift from 6 p.m. into 6 a.m., and we'd fight through the night. So I'm in the chow hall there. When we're out in the field, it's me and the commander at the table. There's probably about, oh, I'd say maybe 30 or 40 other troops that are there within the chow hall. So I'm just kind of trying to set the scene for you here. I was eating and talking at the same time, obviously, as all of us do, and I got what I thought was some dry chicken. And I had a little bit of a buildup to this, and that's for other questions. But that piece of chicken, I could not swallow, and it got stuck in my throat or in my esophagus, if you will, to the point that I could not breathe. So I kind of looked at the guy in front of me. His name was Brian. I looked at him, and he kind of looked at me. He goes, are you okay? And I just kind of shook my head. Nope, I'm not okay. So I stood up at that time, and he got around me and performed the Heimlich maneuver on me. And I was trying to also maybe ingest some water to try to get that piece of chicken or whatever was stuck in my throat down. And eventually I did regurgitate it up all over the table, as you can imagine. And at that time, we had a couple of the troops run and grab one of our field medics. And these guys are pretty good. They're highly trained in a lot of different areas. They're very good doctors and very good in an emergency situation. I was a little embarrassed, as you can imagine, afterwards. I thought I was literally gonna die in Afghanistan in a chow hall, and my wife and kids were gonna hear, your dad died choking on a piece of chicken in the chow hall while he was at war. So I was a little embarrassed, but our medic was really good with me. And he said, hey, sir, let me tell you something. He goes, he kind of checked me out. Everything looked good. My airway was clear from what he could see. And he said, look, don't write this off as you just didn't swallow your food or chew your food correctly. He goes, from what you're telling me, I think you have something else wrong with your esophagus. Promise me that when you get back, you're gonna get this checked out. So in redeployment, as I got home and I still had some, and I always had a little bit of discomfort in swallowing things throughout the years for maybe a two to three year build up to this point in 2009 or 2010, I did go to a flight doctor who then recommended me to a GI specialist. And I then got an EDG done and I was diagnosed with EOE. So that would have been probably early or mid 2010 that I was diagnosed with EOE. Dave, you said, how long would you anticipate you were having any type of difficulty with your esophagus? Anything that you could relate to your esophagus, whether it's the sensation of food going down or discomfort in your chest with eating, how long was that going on before this episode in Afghanistan? Yeah, I would say it all probably started about three years prior to that. And then, yeah, and then I just kind of would write that off as, hey, I'm not eating, I'm eating too fast or I need to have drinks with me when I eat. And so, but it was one of those things that whenever I had an instance, I could always drink and clear whatever was there. And so building up to this, I had had one instance where I couldn't get things down. And that's, it was just kind of one of those things where you just kind of roll with the punches. And then the next thing you know, you have something like this happen. And then I knew, well, okay, I've got something wrong with me, I don't know what it is. And it must've been terrifying to be in the middle of Afghanistan and have something like this happen, not certain what the resources would be that you need. Can you reflect on that? Sure, absolutely. So, I'd already mentioned the fact that I thought, okay, that's it, I'm gonna die right here in the chow hall from choking. And so, you know, that was, it was at that point that I started to realize I really need to watch myself when I eat, I don't know why I need to watch myself when I eat, but I would start to eat things a little slower and be much more cognizant of the types of foods that I was eating and the environment that I was in when I was eating, because anything like that that happens, as you can imagine, is dramatic and it can be very, very embarrassing. And were there any other emergency room visits or urgent issues that occurred after that event? Yeah, there sure was. So, Bill, I can't remember if I talked to this one last time, but well, this is kind of what brought me to the dark tyranny, I guess. It was, oh, maybe two and a half years ago, one half to three years ago, I was at Cracker Barrel with my wife, Sunday after church, and Cracker Barrel, man, they got a great pot roast, you know, it's amazing. I don't know if you guys have ever had it. Now, I will tell you that I have a rule of thumb that I don't eat steak, I don't eat stews, I don't eat those things. I've just learned not to do that. Well, I've kind of given this pot roast a try or two on a former occasion, so I'm like, you know what? I'm gonna have it. So, I had it all right, and about halfway through eating a larger piece of meat, I couldn't get it down, and I had another instance where I couldn't breathe again. I ran out the back door into the parking lot, and it sort of kind of dislodged itself. Some of it came up, some of it went down, but I still had a lodging in my esophagus and my throat, and my wife zoomed me to the hospital, and by the time I'd gotten to the hospital, most of it had kind of passed down. I got to the point where I could, you know, I had a physician with me. I got to the point where I could drink water. Before, I was drinking water, and I would immediately regurgitate it violently, so nothing was going past this, whatever was lodged, but I could breathe. So, I could breathe, but I just couldn't drink. It was very uncomfortable, very scary, and then finally, everything passed, and after that, I was fine. They observed me for a little while, and then I went home. And so, you did not have to have a procedure in the emergency room at that point. It was on its own, and they discharged you with follow-up. That is it, yes. Okay. Tell us how EOE has affected your quality of life, Dave. Yeah, sure. So, I mean, you know, there's a lot of ways to characterize or define quality of life, sure, but I will say that, okay, for instance, just before getting on camera here, I had chicken Parmesan, and the chicken was a little dry, so I had to just discard that and eat the pasta with sauce and spinach for lunch, and so that example of what I just gave you, which just happened about 25 minutes ago, is how I live my life now eating. So, I'm very cognizant of the foods that I can and can't eat, how they need to be prepared, and the way that I need to eat them. The other thing about this condition is, there are some times when it may be worse than other times, and you don't always get a sensation, if you will, that at that particular day or that particular week, your throat or your esophagus isn't in the shape it needs to be. Maybe the inflammation's up a little bit, and I don't know it, and so sometimes I get a little blindsided by, oh, man, usually I can get that down, and today I couldn't. So, it's affected my life in that I really have to pay attention to what I eat, where I eat, when I eat it, those kinds of things. So, you have had dramatic modifications of your diet since your, really, since your original diagnosis, when you first had that episode in Afghanistan. Is that fair to say you've really kind of modified and adjusted what you consume and what you eat? Yes, you bet, 100%. So, it's been a good 14 or so years that that's been the case for you? Yes. Yeah, okay. Dave, do you suffer from any other allergic-type conditions, any other allergies? So, I've had the whole, you know, in all of this, I've had the whole allergy workup. I was, so I've been diagnosed through an allergist. I have a weed intolerance. I'm not a ceciliac at all, but I do have a weed intolerance, and I'm allergic to environmental mold, I guess. But nothing else other than I always have had occasional eczema, if you will, from time to time. And when did you see an allergist? Was this back when you originally were diagnosed with EOE, or when was it that you had that contact with the allergist? This was about three years ago, Bill, right before I came to see you. Okay. Tell us about the treatments that you have been on for your EOE in the past. What have you tried for treatments? Well, the treatments, you know, are limited. And I, you know, I guess, and that's kind of why you guys are all here. There is this, to help me with some of these, there's this fluconase, it's called, what is it that- Fluticasone. Yeah. So, you know, that's designed to be inhaled, I guess, for asthma. But the, you know, the prescription was, you know, you need to drink this stuff, and that'll help with inflammation in your esophagus. That, and of course, the PPI that I've been on. The fluconase, drinking that, didn't really help me at all. But the PPIs, in particular, dexalate has helped me. It's interesting in the Nexium, does not help me. And then there's another one. What's that other one? Is it Omeprazole or Prilosec? Prilosec. Yeah. You know, I've noticed that dexalate seems to help. So there's a little bit of variation, I think, in what works for me. Variation, I think, in what works and what doesn't work. And then there's that choke it down that I'm taking now. What's that stuff called? The Budesonide, the slurry of Budesonide. Yeah, that's another, you know, fun thing to try. So that's, those are the things. So, and so, you know, I know that the Dutexant obviously is what brought me to you. And I just discovered that on my own research on that was something that was in the works to actually be an FDA approved treatment, the first FDA approved treatment for this condition, other than just throwing all these other things at the problem. And you were first, when you were first diagnosed, remind me what they put you on at that point when you were diagnosed in 2010, was it just the PPI? Is that what it was back then? Yeah, it was the PPI and the, what do you call it? The- Fluticasone. Inhaler. Yeah, okay. Tell us about barriers to treatment. What are the barriers that you've run into in terms of accessing or taking treatments in terms of cost, access, approvals, you know, connection? Oh yeah, we just went through that. Well, I'm just talking about your whole history. Have there been barriers in your whole history, whether it's a cost or just having a physician that provides the care or approval process? Yeah, so I think initially, and I think the word on EOE, education among the medical community, I've just physically seen it as a patient. It's become a little bit more predominant over the past 13 years or so. Initially, you know, a lot of family physicians didn't even really know what it was, but they could get the information fairly quickly just based on the databases that we have and the information that's out there. So, you know, the treatment was a little limited at first, not real sure what you can do. Hey, you just gotta live with it and watch what you eat, eat slowly. I can tell you that the PPIs that were not working, I eventually had a doctor recommend Dexalent, which did give me some relief, but Dexalent wasn't approved by my insurance. So I was paying for that out of pocket as I still am today. Now the generic form of Dexalent has just been released. So I can get that in a generic form, but my insurance still does not pay for that because there's the other forms of PPIs out there that I can be on. And of course, the Texan, we just went through, you know, my insurance won't pay me back till I go through all these other regimes. And, you know, it's kind of the last resort right now because it's new. Okay. So it's frustrating. Yeah. So it's frustrating from a patient just to be able to access and have therapies that hopefully are going to treat your disease. Tell us about, and by the way, guys, you're going to have an opportunity to ask questions here at the end after I roll through some primary questions with Dave. What's the most important aspect of your care as you cope with EOE and any of the other allergic conditions you have? What's the most important aspect for you? Well, I think the, you know, the most important aspect is just the fact that, you know, the doctor that I'm dealing with understands the condition. And so, you know, there are, I've had a couple different GI doctors even over the, over the years who don't, don't really understand the condition or know how to treat it properly or can't explain it sometimes maybe as well as I can. So it's, it's important for me to have somebody, you know, who just knows what EOE is, the effects of EOE, what, what the lifestyle piece of that brings, and then just looking, looking to get the proper treatment because, you know, it's, it's one of those, it's one of those diseases that, you know, it's a type two, right? Inflammatory progressive disease, right? I hope I said that right. You did, you nailed it. Inflammatory progressive disease. You nailed it. That, that right now is non curable. So, you know, that's, that's a scary thing when you hear that, that it continues to progress, which it does continue to progress in me. I'm in a different stage now than I was 13 or 14 years ago. So I think that the continuum of care and just having a physician that understands the condition is, is the biggest part of it. The other thing is, you know, it's a safety concern. So I always think of, and I said this in the last seminar, you know, there, there are probably kids out there that, you know, they're, they're just being told you need to eat your food, you know, you're not chewing your food properly. And that's not the case. And, you know, they could essentially die from a throat, you know, something lodging in their throat. I don't know if there's any documented instances of that yet. I'm not sure. But, but I know for myself, it was a reality there a couple of times. Great. And that kind of gets into my next question is, what are you most fearful of in regards to your EOE? Yeah, so again, you know, again, the fear is that I'm going to choke again and have to be off to the emergency room. At least I know what that means now. But then again, you know, it's not all just about me. In this world, it's about other people who struggle with the same condition. And again, it's not something that people really understand or know kind of what that means to have EOE. You know, it's, it's different than, you know, some other, you know, things that are going on with the esophagus. But again, I bring up the fact that, you know, with with children, especially, it can be something that could be scary throughout their lives, especially if not diagnosed properly. So and and I don't know where or when a physician decides, hey, I think you need to get an EDG done. You know, if I wouldn't have gotten that initial EDG done in 2010, to at least understand what's wrong with me. I don't I don't know what would have what would have happened, you know, after that. Dave, remind me, when you first had the episode in Afghanistan, how long was it before you actually had the EGD? You had to wait, you were waiting to get back to the States to do that? Yeah, it was probably about a year later. A year. Yeah. Okay. Yeah. So one of the things that we've been talking about is how it's so important to try to diagnose it soon. In fact, at close to the time of when an impaction occurs and that's part of the practice we're trying to educate providers for in terms of really getting on top of the disease very quickly. Okay, I'm going to open it up for questions from our attendees here and what we can do is have them speak into the microphone once I recognize them and hopefully you'll let us know if you can hear their questions. You bet. Hi Dave, can you hear me? Yeah, you bet. Dave, this is Joe. I, like you, also have EOE and have had multiple impactions. I'm just curious to know, day-to-day, what kind of symptoms do you have? Because it sounds like most of your episodes have been related to difficulty swallowing that's led to impactions, which is similar to me. And so I'm just kind of curious, prior to starting treatment, what was your day-to-day symptom situation like? Yeah, so the day-to-day symptoms that I have, I really don't have symptoms per se, except that when I start eating, you know, I have trouble swallowing things. You know, and some days they're a little worse, some days they're not. And it always just depends on what I'm trying to eat. But other than, like, actual other symptoms that I have, I don't really have symptoms if I'm not eating. Does that answer your question, Joe? Absolutely, because that's very similar to how mine is too, because I'll go weeks, months without having any major episodes and then I'll have a significant impaction. And so I think the day-to-day symptoms are sometimes maybe, you know, less common in some folks than they are in others. But it sounds like you and I have had a pretty similar course, so I'm just kind of curious to hear your side of it. Thank you. Yeah, I don't know about you, Joe, but, you know, I always have this around. It's called water. I don't know if you can see it, but I do too. Yeah, it's called water. So, I mean, that's kind of just something I've learned to kind of have around with me. Sure. Dave, you mentioned that you thought Dexilant maybe helped you, but some of the other PPIs really not so much. What did it help? Help the food go down easier, or were there burning symptoms? No, I think what it helps, it helps a little bit with sometimes the GERD that you'll get associated with it, so that that GERD is not then inflaming my esophagus as much. And so as a result, my esophagus is just less inflamed while I'm eating, because I'm digesting things a little bit more rapidly or better, if you will. I don't get the, sometimes the GERD that's associated with the eating, the, you know, eating, if you will. Other questions for Dave? Yep, Steve. Yes, thank you so much for your service, and I'm a big fan of also the Cracker Barrel and the pot roast also. But I'm just curious, do you have anyone else in your family that has EOE? I do not. I do not. Believe me, you know, I'm very, very cognizant of that around. My children have all grown up now, obviously. They're in their 20s and 30s, and my wife, you know, and I've got grandchildren now, but it is absolutely something that's always on my radar, because, you know, I don't know. I don't know if it's hereditary or not, but I'm cognizant of the fact that, you know, if people have problems, you know, I want to help them. You know, like I had a friend who had a similar thing happen to him, and I said the same thing. I said, hey, dude, look, you know, don't just write this off. Go see your doctor. You might need to get an EVG. Here's what I go through. You know what I mean? So I do aggressively educate others if I see they're a friend or a family member and they have similar symptoms. Dave, I'm following up to that. Do you know anybody else? Do you have acquaintances of anybody else with EOE? You know, I really, I don't. You know, I really don't. Now, I don't walk around and tell people I have EOE all day long, either, but no, I don't know anybody that's close to me, a friend or a family member that has EOE. I think it's fairly rare. I'm not sure. You probably have the best data on that. Yeah. Okay. In the front here, question. Yeah. Thanks so much for doing this today. This is awesome to get to hear your experience. I was curious if you have ever been dilated. Yeah, actually, Doc there dilated me. When was it, Doc? About, was it a year ago or so? You should know better than me. I'll dilate you. Was, and that was your first go-around? Yeah, that was the first go-around. I've only had, okay, so I had three EDGs. I had the initial one, which was the diagnosis. There was no dilation then. I then went to another GI doctor. She did not have the equipment at the time to dilate me in my throat, even though she could see the EOE. She couldn't get the scope down my throat, so she pulled out. Then I had a colonoscopy that was associated with that EDG. Then the third one was Doc Tierney, who performed a dilation on me. Gotcha. That second time doesn't sound like it was very fun. Yeah, it was fun. So I guess to all that point, a big part of having EOE is you're a busy guy. You've got a life and a family and everything, and just the additional burden of having to kind of manage your disease through all trying to manage the medications, the doctor's appointments, the procedures, the potential emergency visits that you may have. So just if you could kind of speak to what it's like to have to always think about that as an EOE patient. Yeah, sure. So we all get sick, and we all have problems. We get the flu, whatever it may be. Those things kind of come and go, God willing. Now, I do thank God that initially, I thought I might have throat cancer. I mean, I'm sure that's diagnosed a lot, or colon cancer. Maybe I had something wrong with my colon. So it's one of those things where I'm thankful that I have the diagnosis, and it's something that can be managed, right, because it could be a lot worse. But again, it's just something that I'm cognizant of throughout my life. Like anybody would have a certain condition, whatever it may be, diabetes, et cetera, et cetera. So it's not that I sit around and feel sorry for myself at all. It's a condition that I have to carry with me and just live the best way I can. It's not like I can't eat things. It's just that I have to be careful when I eat them and take my time. And it's just my personality that there are just some things I just won't. It's just easier that way, you know. But anyway, I probably don't need to be eating a lot of red meat anyway, right? So, you know, I don't, and so I don't. So I hope that answers your question. Yeah, thank you. Yes, she said yes, thank you. Okay, question in the back. Thanks so much for sharing your story and your experience with EOE. I was wondering how this disease has affected your family too. I mean, are they sitting there staring at you while you're eating in a restaurant and every time you cough, they're really worried? Or how has it affected those around you? Well, that's interesting. You know, I don't think it really affects my kids that much, they don't think about it that much. But my wife's a lot of fun to be around. And I love my wife. We've been married 31 years. We have four kids and four grandchildren. But, and this is just something little, okay, but I want you guys to understand as it plays into it, she's got to always make things different for me. You know, I'm that different meal plan kind of guy, or, hey, your father, I can't make that, you know, because your father can't have that pot roast, or that steak, or sometimes she'll, she'll get a little frustrated, because what she made, and spent all this loving time on, I just can't really eat it that night, for that day. And that frustrates her, she can't help it. You know what I mean? It kind of frustrates her, even though she understands, even though she understands. So it's, so every now and again, that can, that plays into it. It also plays into it when we go out to eat, too. Because, you know, I'm kind of one of those limited diet kind of guys, depending on where we're at, you're not going to see me hanging out down at, you know, the steakhouse, downtown, you know, I generally will migrate towards things like fish, you know, grilled fish, you know, vegetables, and, you know, those sorts of things, but not, not things like dried chicken, pork, or steak. And sometimes that can get frustrating for our marriage, and my wife, and, you know, and sometimes my kids, you know what I mean? It's a bit, it's kind of a funny thing, you know, we kind of joke around the family about that. But yeah, that can be a challenge sometimes with relationships and friendships and, and just going out to eat with others. Because I don't go out to eat with others and go, hey, man, I got EOE. I might choke to death here today. But let's go on and have this business meeting. You know, so it's just something that I order the seasoned salad, you know, or the, or the fresh grilled fish or something like that. And we go from there. Hope that answers your question. Yes, thank you. Okay, any other questions for Dave? Okay, yes. I have somewhat of a question, but also an ask that we continue raising awareness about EOE. Another, they say, they call it rare, but yeah, I'm yet another patient with EOE in the room here. And what I find is that in a setting where you're going to conferences, or you have a lot of meetings when you're trying to work, this really strange phenomenon happens. If you're on a dietary restriction for your EOE, then you usually have to have the special food from the back, which means tracking someone down to say, hey, do you have the gluten free dish for me or whatever, then they bring it to you. So you've already started late. And then they make up time for not this meeting, you guys have been great, but in some meetings, they make up time that's lost by shortening the lunch period. And so when you're a masterful masticator, and you have to take your time and focus to eat, you've now gotten your food late, and they've made up the lost time by cutting your lunch. And so I think as we raise awareness about how important it is to have that mealtime, that focused mealtime, especially in settings where we're talking about EOE, we can't ask the whole world to accommodate, but in settings where we're talking about food allergies, EOE, not cutting into that mealtime, because it might just be a shorter coffee break for you. But for someone like me, it means that I don't eat or I often eat in the back of the room by myself. So just raising awareness around that and not being afraid to share that you have it so that people don't accidentally cut into the time that you need in order to finish your meal. Good point, being respectful of all inclusive. Yeah, yeah, sure. I sympathize with you in that, you know, a lot of times I won't eat, or I'll eat ahead of time, or I've got things in my bag that I can't eat. So that's kind of how I, you know, I do it. And then, of course, I think I already mentioned that I've always got this about me. Okay, any other questions for Dave? Dave, very big thanks for joining us. Our goal is to get you to that pot roast that you love and be able to enjoy that at some point in the very near future. So again, please join me in thanking Dave for sharing his perspective. Thank you.

eosinophilic esophagitis

patient experience

first episode

difficulty swallowing

healthcare provider

treatment challenges

family impact