The Doug Stanhope Podcast - #556 "Medical Mystery" - An Emergency Mini-Podcast!

Episode Date: July 29, 2024

If you're a fan of WebMD, this one is for you! Doug sits down with Alex to discuss (and hopefully find a cure for) his Tracheomalacia, which has both the medical world and Doug stumped. Over to you, internet!Support the show: http://www.Patreon.com/stanhopepodcast

Do you know Rob from Madison? No, I don't think so. He's around for football. Oh no, no, okay, okay. I just put it together. Yeah, yeah. Well, he did a great job. This is, yeah, yeah, it's tiny. Which is what you wanted. Holy shit, this is great. Wow. Good for you. Wow, what are you about to? Nothing, I just, some guy just came over. David Rose, Dave Rose, photographer? Oh yeah, no, he's a great photographer. Yeah, yeah, yeah, he has a building in Lowell, used to be the old car dealership, he redid the whole building, it's beautiful.

All right, oh, that's him? Oh no, he's a legit guy, yeah, yeah, yeah. Yeah, no, he texted me and said, hey, thanks again for the Meatball Friday night and it's great to hang for a little while and I'm glad you're gonna do this project and... What project? I don't fucking...

Seriously? Absolutely no memory. Did we have meatballs? And they remembered meatballs kinda. So you text me back, I'm all in, I can hardly wait. Well, unfortunately, I had to leave town to go to Austin for that hockey game. Right, right, okay.

So I said, get back to me after whatever, because I'm going to Austin. Are you back from Austin? How'd the trip go? whatever, because I'm going to Austin and he's like, hey, are you back from Austin? How'd the trip go? And I'm glad you're doing this for the Artemisia. Oh, okay, for Sloan's thing. Okay, gotcha.

Yeah, yeah, yeah. And so I said, yeah, come by. I wanted to scout the location this morning. And came by and gave me a hug. And he goes I haven't been here since the Super Bowl before COVID and I don't remember from then I don't be now didn't know we were on a hugging level you have to amnesia when it comes to

this guy you know apparently you're doing something for him. Yeah, I don't know how many. Oh my god, it's so funny. There must have been drugs involved. Okay. It was mushrooms and edibles and obviously cocktails. This is why you've had bad relationships, I'm just saying. Yeah, the problem is I have a fine relationship, we're still hugging. Yeah, this was going gangbusters till the end. It's going to be ugly. That's so funny. Yeah, speaking of it's going to be ugly, so is this podcast because it'll harking you back to the days when I was a smoker with the phlegm. So don't worry about it. They're used to it but yeah so I've looked up the

tracheomalacia yeah and it's fucked oh it's completely fucked it's and it's rare it's it's and it's usually babies and young children it's kids and then there's adult tracheomalacia which is the rare kind all All right. So from what I saw, the things that could cause it, you didn't fit any of those bills. You haven't been integrated. There's no cause. I mean, that's the one, but there's no known cause. It's not like you inherited or it's not Diet Coke. You know, it's not anything.

Could you make me a cocktail? Oh, that's what you want. A vodka soda splash crème? You got it. Thanks. So yeah, there's no there's no like if you do A, B will happen kind of it's not at all. Not at all. No part of the part of the issue with it is it's so rare it hasn't been studied. So there's not a lot of there's not a lot of info. And that's why we're doing this is in case

anyone knows anything about a trade deal Malaysia, or knows someone who knows someone who's and you've seen specialists and they didn't turn out to be all that special. I saw a guy in Ohio and he did a procedure that may be worse, but at the time I didn't know it. When I first got when I first found out about this, they stuck a camera down my throat and I came to and they said, I have bad news for you. Like what the fuck? And they said, you have this thing and it's untreatable and it's progressive and it's terrible.

And then the guy walked away, I'm like. Like, can I get some ice chips? What the fuck, right? So I mean something, man. And so then I looked it up because I wrote a book about clinical trials. This is my wheelhouse, right? So I'm like, oh, and I found a guy who wrote a paper and he did a thing where he scarred the trachea to the scar tissue is supposed to make it stiffen because what the conditions is- It's softening. It collapses. Yeah. Yeah, especially on exhalation. So he scarred it and did all this stuff, but it didn't work.

And it's not that it's a bad procedure. It's just that it didn't work for me. Have you tried like PVC tubing? Yes, actually. Have you been busby plumbing? We, no, I got a stent, a metal stent first of all. And that was a fucking nightmare. It was so painful and I had that for a month.

And it was, it was to the extent where I would, I would be in my house and just say, I must be dead and in hell. This must be Jacob's ladder. I must be, because there's no way I could be alive and doing this. It was that bad. Then they took that out, thank God, and a few weeks later they put in a silicone stent. And what ended up, that was bad too, my trachea ended up crushing it and it ended up moving

up. And even if it had worked, stents are only a tensile fix. So it's not just collapsing, it's imploding. It is, it's got strength. Ooh, yeah. This is fucking, I know I'm a little bit laughing, but this is deadly. I know you're keeping a stiff upper, looking at it, smiling.

Oh no, I'll be watching, I'm watching the Tour de France, because I love the Tour de France, and something will happen, I'll just watching like I'll be watching I'm watching the tour de France because I love the tour de France and something will happen I'll just start weeping I better not go out today This is not gonna work out so but they put a silicone scent in and those are temporary because they attract Infection and if you get pneumonia, I mean that's pretty much what's gonna kill you So so those they put this what's going to kill you.

So those, they put this in for up to two weeks. So there's no cure. There's no treatment except for the surgery in Boston that I may or may not get. So and that's what I'm aiming for. Nice. And we're back. So one of the weird parts about it is that because there's so little information, I don't know what it's like to live with this. No one can tell me there's no case studies.

I don't know if I'm doing good or bad in the arc of things. I have no clue. I have no clue. That's a dumb question. But have you? Have you looked it up on Reddit? Yeah, nothing. There's nothing fucking nothing. I've been and I I'm keeping my own diary sort of just as just just a wine. So I don't forget how terrible it was, but there's so little. And that's part of the issue is, and I talked to my doctor last week.

I had one thing, just remind me when we're done on my own Reddit page to put up, just so anyone Googling it will at least find something and then maybe they'll reach out and have a pal. Yeah, that'd be great. But I talked to my doctor, he's a great guy at Banner, and I messaged him on the portal that I'm on, because I'd taken a turn for the worst, things got much worse for me, just functionality plummeted. And he got, he said, you know, let's have a phone call. We had a phone call. And after I told him all this stuff, he's like, okay.

And he said, I there's really nothing I can do. And I was I appreciated his honesty, you know, because there's no one expecting it. Well, I pretty much figured that because he doesn't know, he said to me about things. I don't know when I got the first stent and they're going to take it out. I asked him, will I breathe better after this? And he I don't know I'm like oh goody I mean so good a dark mark too just to see yeah because yeah he might know of someone that knows someone but yeah you have to go to Boston because and you have to get in one of those fucking iron lung type MRI machines? Oh, fuck me, I am freaking me out. I get your eye masks. Oh, good, good, good, good. I'm gonna rehearse that, yeah.

Okay, because when I had the MRI, they said, do you have any problem with claustrophobia? And I go, well, yeah, a lot. Yeah. Cause you will be in, and she goes, it's not the really bad machine. It's the, and I, so I looked up Google image search and I go, I hope it's that one.

Cause if it's that one, I'm fucking. There's the donut one and then there's the pod one, which, and you're like, fucked. Yeah. Yeah. But I, yeah, I wore an eye mask, because I always sleep with an eye mask and on planes and I just I pretended like I'm on a sleeping car track. I just that was and Xanax helped. But

Xanax doesn't work for me. I tried taking two the other day just to practice again. And I'm still the, you know, anxious fucked up person I was. And I'm like, there's nothing, fucking nothing, man. So I'm hoping, I'm gonna see my doctor on the eighth Peggy Avina, and I'm gonna ask for a hardcore Valium and see if I can take a couple of those.

But doesn't that suppress your- That's part of the problem, suppress my breathing. Yeah, it's, you know, all this fucked up stuff is the ancillary stuff. It's not the, I'm sleeping hour and a half, two hours, you know, all this fucked up stuff is the ancillary stuff. It's not the, I'm sleeping hour and a half, two hours of a stretch, then I wake up not able to breathe. And when it comes to claustrophobia, I never had it. I have claustrophobia outside because I can't breathe.

So I'm like, I'm wheezing. There's no getting away from it. It's really weird. The whole thing has just been very strange. Yeah. When you were explaining that to me, I understand that feeling. Having something in your, where you're coughing it up. Yeah. But sometimes I will go an hour and a half trying to get it and I can't.

I can't get it. And it's clogging me up and I can't cough it out. And it's just there. And a couple of times I've panicked because I couldn't breathe. Yeah. And I had a little speech with myself saying, don't panic, it's gonna make it worse, gotta calm down. And I'm like, but I can't breathe at the same time. And this has happened so often, I'm starting not to get used to it, but to know the steps that I have to take. But again, there's no, there's no information source that says if this happens, you should, there's nothing.

I can't believe you haven't started drinking again. Yeah, me either. But I imagine that would make my head explode at this point, because I'm just one my worries are so exponential. It's when you get sick, it's boring. Your life to get so small. Being sick is fucking boring. How much is your phone stopped ringing? Not that I have some great friends. Andrew, Bronwyn, Olivia, you, other people have been fantastic. Again, like I said, it's like being at your own wake. Everyone has been amazing. And I'm like, oh, I'll never pay this shit back. I am in debt for the rest of my life.

I am so screwed on this deal. I've got to be a really nice person now. You have to fucking, the weight loss is fucking dramatic. Yeah, I got to puff my cheeks out to shave. You know, I mean, it's, it's, the shit's getting weird, man. You know, and- I was just picturing that.

You just, I do, it's like- Literally do. Yeah, no, I literally do. Yeah. So I just it's just hilarious visual. Like, you might go blowfish. Exactly. So my life is so odd because I don't go I, I, the other day, I had a great day. I walked to the patisserie, you know, and I got a chocolate croissant and I walked home and I was exhausted from that. And I made a cup of coffee and I had a chocolate croissant and I watched the Tour de France and I'm sitting there and I thought to myself, I have this great life. This is fucking amazing. What are the poor

people doing? This is incredible, right? And then 10 minutes later, I started into a coughing fit that lasted almost 45 minutes. I'm like, okay, maybe life ain't so great But you know, I mean for a moment It was like okay. No stuff Part of the thing when you get sick, I think is you don't want to be a pussy about it You but could you bitchin, you know, it's like I Cried because I had no shoes and I met a man with no feet. Yeah. And that cheered me up for a while, you know.

So I'm sort of that way. You know, I'm like, I gotta, I gotta be better about this. Do you have that up? It's on the Wikipedia page for Tracheo Malaysia. Oh, could be just an image search. Oh, yeah, the images, I just, it's not going to work on that TV anyway. On the Wikipedia page, it shows like a normal and then one type type of trachea trachea malacia and then and then a third version and they all look like pocket pussies yeah wow

look at that I was gonna have you pick out the one you think is yours mine's mine's getting more severe and it's And it's the entirety of my trachea. Usually it's the top or a part. Mine's top to bottom into my lungs. So everything's just collapsing. And there's no reason. And it's not like I did something. Yeah, it's one of the reasons when I was looking up,

there are some causes that- Yeah, intubation is one of them. But that's I mean, that was like, I hope it's not smoking is a Andy's bit, you know, it's something that people can blame you for. That's what I'm I'm trying to, you know, I guess, through through through trauma, you get you have to be better. It's supposed to improve you or something. And I'm trying to be more patient. Like, you know, just just fucking because my days are fucking long, because I don't do anything. And I'm like, and I remember, years ago, I went on this religious retreat to Holy Trinity monastery in St. David for three days. And it was great, right. And I come back and about a week later, I'm talking to Russ. And Russ says, you know, when you came back from that retreat, and you were all mellow and serene?

I'm like, Yeah, he said, Yeah, that wasn't working for me. That was fucking weird. Don't do that again. Because I'm not a patient person. It's not my nature. You know, I'm not fucking who I am. And I'm trying to be. You can't force it. So it's COVID all over again. But you can't force it. So it's COVID all over again for you. It's, I'm, I mean, I can leave, but how far can I get? You know, I mean, it's kind of silly.

So yeah. To be fair, if I was going from your house to the patisserie, I'd drive. A quarter of a mile. Yeah, it's got a little bit of a hill there too. Well, true, true. The quarter of a mile. Yeah, it's got a little bit of a hill there too. Yeah, well true, true. So if I'm online, like at Safeway or something, at the pharmacy, I am sitting there saying,

okay, how long can I stand here? It's starting to get to that point, and it wasn't until a few weeks ago. And now you're, I'm 59, I'm planning my life like I'm 87. You know, like, okay, what can I do, what can I do, how much can I take this? And your thinking just fucking changes into these incremental tiny things that now you have to negotiate, you know, with yourself. And you don't wanna fail.

It's like, no, I can make it up my day. I live up 53 steps. And I'm like, I can make it. I'm like, no, you can't, man. No, you can't. You know, I gotta make it up my day. I live up 53 steps. I'm like I can make it. I'm like no you can't man. No you can't. You know it's I gotta take it slow. Yeah. That's one of the reasons I didn't drop those eye masks off for you is because A. I've never been I know where you come out of your house. Yes. On the sidewalk. I don't know where up in there it is and I didn't know how many stories. If we know each other 15 more years maybe Amy will make it. Now that I know it's 53 steps, I'll never be there.

Never fucking be there. So, but I'm taking, you know, and you take one step and then the next foot goes on the same step, like a little kid. Oh, yeah. That's how I'm fucking walking, and I'm like, fuck this, fuck this. Fuck it.

You know? It's just, everything is, everything's surreal. It's just really weird. Being sick is weird to begin with but having something That I don't know that they're gonna do the surgery on I don't know that you said Because it's I love that you're writing Yeah, because you're taught on the phone. You told me that you can't even read because you don't have the concentration I'm watching old law andders because it's comfort TV. And you don't have to think?

I just sit there and it's great, you know, I mean, because I don't have to think exactly. You know, I can't, my concentration level is tiny. And part of that is- Can you do audible books? I can, but it's, it's for long periods of time, part of it is I'm retaining CO2, because I can't exhale. And that's poisoning me over time. Another thing, I mean, it's just the gift

that keeps on giving, you know? So I have to negotiate that and figure out how much is that making me weak? What are my, you know, do I need to go to the hospital because I have to fix that? Is it that bad? I don't know, you know? So it just keeps rolling. You know, so

what about a tracheotomy with that? Is it? It's the whole trachea that's collapsing. So they could put up they can stick a hole here. They can give me oxygen, but it's like pinching a straw. The oxygen is not going to get to my lungs. It doesn't it doesn't it's not gonna get there. You know, iron lung? It doesn't, it's not gonna get there. You know. Iron lung?

Silicone lung? You know, Velcro lung? I'll try anything at this point. I'm like, sure, great. You know, I'm going into Boston to Beth Israel, which is the hospital for Harvard. So I guess they're smart. You know, I hope. I know at least I'll charge a lot. So, and they're gonna do a bunch of tests that I've already had done, but they have to do their tests.

And after that, they'll let me know if they're going to do this surgery, which only a few places do. So I'm waiting on a verdict. If they don't do the surgery, I'm fucked. I mean, I will have to live with this. There's no cure or treatment besides the surgery at Beth Israel. And they might decide not to, for whatever reason. I mean, it might not meet their criteria. You know? Well, you had the going away party for Floyd's asshole? When he lost his asshole to cancer. I know, yeah. Good party.

We had a good party. It was a good party. He lost his wife over the podcast. I know, yeah. Or she used that as the excuse. Well, yeah, but. Anyway, I had to ask him, I'll ask you, especially when you had the metal thing, how often did you think about killing yourself?

Yeah, there's a couple times it's come down to, I know people who can get morphine, and that's been a couple times. And I didn't think of it really, but I sort of, I'm very logistical, like I'm a fucking idiot, like I can plan being sick. It's the ultimate ditch bag. Yeah, yeah.

Having that in the cabinet. It's like, okay, if I decide I can do A, B, and C, I can get there. And I satisfied myself with that, but I'm like, I got to find, I want to see how this thing's going to end. You know, because right now it's a cliffhanger because I don't even know if I'm going to get the surgery. And the surgery is

Fuck of a surgery and it's eight hours long. It's robotic You come to and you're on an epidural. You have a tube coming out of your chest. You have a catheter It's like you you have a tube Giving you lots you're fucked man for a while Recovery is like two months And I asked the guy Mike is that a real two months? Come on. Yeah. And he said, we had one guy go back to work after six weeks, but he had a desk job where he didn't have to talk to anybody. I'm like,

okay, I'm not doing that. You know, so it's a real thing. And then you start thinking, how much sick time at work do I have? How am I going to get paid? Can I make the mortgage? Exponentially, I play things out exponentially. How is this? How might this go? Yeah, like, if I don't get the MRI, or freak out, right? Then they may decide not to do the surgery, because I don't have that test. Or they might take longer, which means I have to live with this longer. So then the dominoes

start falling. And so you don't know which one's going to knock them all over. And which one's not. It's very weird. And so you're gonna have to stay in Boston that whole time. Well for the tests I'm only there for three days. For the surgery, yeah, I have to stay in Boston. But you'd be in the hospital. No.

For the first week I'm in ICU and then regular hospital. Then they say get out of here but don't leave Boston. All right. Well if nothing else we can of here, but don't leave Boston. All right, well, if nothing else, we can probably find you. Don't leave Boston. We can probably find you a couch to sleep on in the. Yeah, for a critically ill person.

Hi, how you doing? I'll just clean up after myself. So, you know, but then I had to stay there for two weeks. The reason being, if something happened to me and I went to like the hospital, no one here would know what the fuck it was. No one anywhere would know what it was. So they couldn't treat it.

So I need to be nearby. And then I get to come home after a total of three weeks in Boston, if this happens. And then I get to recover for six more weeks. Fuck. Yeah, no, it's an investment. You gotta be committed, man. You gotta be totally in or out.

You know me, I've had an eye-less cell transplant to cure diabetes. I've had, you know, medically I've described clinical trials as the extreme sports of medicine. That's what this is. This is out there. And I can't even find information. I'm good at finding information. I was a reporter, all this other shit. Can't find shit about what to expect,

how it's gonna go, anything. Hopefully in Boston when I go out there, they'll answer some questions. That would be nice. You know? If every time we say Tracheo Malaysia, Tracheo Malaysia, if you could just err that word on the screen, some people Google it. If you're in the medical field, ask some people, who do you know that knows anyone who knows

anything and if nothing else, let them die on your couch in Sudbury somewhere. And at this point we've raised $80, so we're doing great. Yeah, do you have a GoFundMe? No. Oh, are you, no, you teach. First of all, Alex, if you haven't seen Alex on the podcast before or back then, heard him on the podcast, Alex from,

like he's a guy that was my acting coach when I did the Louie episode. Oh, I'm sorry, I forgot about that. Both Bingo and my books, he's proofread and given notes. All of them, he's been a great friend. So a lot of the shit that you enjoy about me is because he helped. So yes, if, anyway, you can think to send this, anyone you know that you can ask about it,

or if you're just a handyman and you have an idea. Sure, got you by four. Damn, this is gonna hurt. Damn, this is gonna hurt. So yeah, it's been a strange trip and I'm hoping, I'm lucky I had the summer off. And again, I do count my, literally count my blessings because there's so few, they're easy to count. But I'm like, you know, yeah, I fucking summer off and that's amazing. Truly. So I'm lucky in a lot of ways with this shit. We'll see if it works out though.

I don't know, you know? All right, well, we're gonna wrap this up because it's a mini cast, but we wanted to get it out as soon as possible. But you'll hang out. We'll talk more. Yeah, sure, definitely. Yeah, that sounds great. All right, thank you guys very much and We'll talk more. Yeah, sure. Definitely.

Yeah, that sounds great. All right. Thank you guys very much and we'll see what you find. And I'm going to put, I'll make a Reddit post right now on my Reddit and we'll see if we can find other folks. Because there's no clearinghouse. There's no, there's no place. Yeah, there's no Tinder for exactly.

Yeah. No matches out there. No that'd be cool though. All right let's hit the computers. All right cool. See you thanks. Bye.