Heroes of Healthcare
Heroes of Healthcare

Episode · 2 months ago

I had to cure myself, A Story of Grit and Courage w/ Doug Lindsay

ABOUT THIS EPISODE

At 21, Doug Lindsay, Founder of The Lindsay Center, got sick.

He got so sick, in fact, that he remained bedbound and homebound for the next 11 years.

And seemingly no one in the medical community had answers for him.

So, he took matters into his own hands, and because of his unbelievable grit and determination, he diagnosed his own rare condition and came up with a cure.

In this episode, he shares his incredible, inspirational story.

We discuss:

  • The frustrations of having an undiagnosed rare disease
  • How Doug uncovered a treatment for his condition
  • His advocacy efforts for the rare disease community
  • How the study of rare diseases leads to exponential medical innovation overall 

Resources mentioned during the podcast:

To hear this interview and more like it, subscribe to Heroes of Healthcare on Apple Podcasts, Spotify, or wherever you listen to podcasts.

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I was a normal college student and I got sick at twenty one and I saw a bunch of doctors. They didn't know what was wrong or what would help. I ended up having to leave school and I ended up bedbound and homebound for eleven years. You're listening to heroes of healthcare, the podcast that highlights bold, selfless professionals in the healthcare industry focused on transforming lives in their communities. Let's get into the show. Welcome to the heroes of healthcare podcast. I'm your host, Ted Wayne. Today we have the prelude privilege to hear a unique and powerful story of perseverance and pure grit. As one patient not only was forced to identify and design the cure for his own illness, he had to advocate and find a team to perform the surgery he designed through his own research that spanned over a decade. This powerful story has been featured in people magazine and heard on such news outlets as CNN, the BBC and as a featured speaker on the Ted Talks Platform. Joining us today is Doug Lindsay. Doug Lindsay has spent the last two decades investigating and tackling rare complicated medical conditions, first in himself and his family and now through his personal medical consultant services. Douglas faced with no answers for debilitating chronic illness. So, like most pioneers, Doug decided to take matters into his own hand. With no direct medical knowledge, Doug sought out and solicited the help of some of the heroes who would help him diagnose and find the cure for his condition. I cannot we fuel to hear dougs incredible story. Now, as an innovator and patient advocate, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system UN stuck to aid him in his work. He strives to understand healthcare from all levels of the organization, from the Individual Health System, public health and global health. As we will hear in his extended episode, Doug is Co Chair of Washington University's Community Advisory Board for their institute of Public Health and his CO chair for Cory, a congressionally mandated rare disease advisory panel borne out of the obamacare initiatives. Doug recently was an advisor to the NIH active one. I am international clinical trial for hospitalized covid nineteen patients. Doug's dogged, indefeatable and creative availability ability to chase down answers to individuals complex problems makes him a special asset as a teammate and a personal medical consultant. I can't wait for you to hear this episode and the inspiration of one man's work to find a solution. So it's with great excitement that we delve into today's show. Welcome to the heros of healthcare podcast, Doug Lindsay. Hey, thank you for having me. Yeah, very, very excited to hear get into this today and different for us on the show, but still a great story and I think their listeners are going to get a lot out of this. So let's jump right in and dug. You got such an awesome story about how you came into what now is your healthcare advocacy, but obviously it started off with having to advocate for yourself. So if you don't mind, please jump in and just tell us the story of your journey that is kind of leg you to here, and then we'll get into more about the the great work you're doing outside with the healthcare system yeah, well, thank you ted. So I guess I'm going to give basically a sixty two overview or something so people know where some of this is going. You know, I was a normal college student and I got sick at twenty one and I saw a bunch of doctors. They didn't know what was wrong or what would help. I ended up having to leave school and I ended up bedbound and homebound for eleven years. In that time I was able to figure out what was wrong and develop the concept for a novel treatment to sort of keep my condition at bay, and I was able to partner with a series of doctors and PhDs and scientists and eventually find a sort of, you know, home in terms of finding a collaborator, and I ended up developing the surgery to fix me. I bet my life on the operating table and you know, when the surgery worked, then I was faced with trying to recover, trying to rejoin life, seeing what kind of health I had and and you know, trying to go forward. I was I was homebound, in bedbound eleven years, but the whole thing took fourteen years and so you know, that was that's been an enormous pipe piece of my life, I would say. So. Yeah, so if we can't, let's can we talk a little bit more about the journey? So sure, and if you don't mind me, she'd mind sharing. You...

...know, what were some of the symptoms? What were you feeling? And talk about a little bit of the research aspect you went to. And you know, I mean, I guess, even backing up, obviously lots of frustration. You know, I don't feel good, and doctor saying either we don't know or trying different things, but nothing seems to be working. And you finally, at some point, must have said you know what, I'm going to take this into my own hands take us on that journey a little bit, if you don't mind. Yeah, so it actually is going to start. You know, I got sick at twenty one, but it's going to start much younger, because my mom and my aunt were sick for basically my whole life and despite seeing doctors for decades, they had no answers and so my mom just kept getting sicker and you know, we were getting, yeah, not even an explanation and not even sure what branch of medicine needed to be her home. You know, if you have tumors you're in oncology and if you have a heart, a mirror cardiology. And this was a small, frail woman with rigid muscles and chronic pain and lightheadedness and and tremendous, you know, disability that spanned everything from cluster headaches to, you know, to to just being too sick to open an envelope for the front door of our house when she was in her S. and we just had no answers. And so I grew up in this environment and I took care of and help my mom as best I could. You know, every day during the summer's I would go down to my aunt's house and tie her shoes, you know, and and you know. So I grew up around this kind of situation and we hoped I'd be fine. You know, I have a cousin and she had a couple things going on, but largely she's lived in normal life. So we had every reason to hope or believe that my aunt and my mom's problems were their own and would not be mine. When I was twenty one, I came down with Mano and I was sick the whole summer and I worked to recover and I tried to go back to school. And and I got there and the campus was so much bigger than my house. I made it to one day of classes and I went to a small, you know, small school in Kansas City. I didn't go to, you know, University of Idaho where you walk forever right now. So I end up in this spot where I go to school for for just a you know, a short amount of time. One day a classes in college is just a couple hours. And I end up coming back and the room is spinning and I'm laying on our dining room table just just exhausted and my heart is pounding out of my chest and and and I'm sweating and and I had to lay there a couple hours before I was strong enough to climb up into stairs and climb into bed. And when that happened, after months of rest, you know, and this was still my state, it pretty much hit me I probably have what my mom has. Yeah, it's gonna ask you. When did when you get the realization that you know, you know you did. You did not. You didn't dodge the genetic bullet right. Yeah, so I end up calling her and telling I'm telling her I'm leaving and coming home. You know, and leaving college and for you know, for the moment, or dropping out for the semester, whatever you want to call it, with drawing from classes, and you know, it was pretty clear that I probably had what she had, and so that was a challenge. But I had already taken a biochemistry research job at University of Kansas to try and start getting the background I would need to try and help her because after watching her struggle for her whole life and doctors not be able to help, I decided I would do what I could. I didn't know what that was, but it would certainly mean trying a lot and hard. And so when I got sick, the fight that I was, you know, looking into making my own in terms of trying to figure out how to help my mom, it became my fight because I was sunk to and so now I have to fight it, though, as somebody who's homebound, laying on the floor in the fetal position, feeling like someone had run a cheese greater over my forearms and and with the room pounding and, you know, the room spinning and my heart pounding in my chest, like I was, you know, by my I'm twenty one. When I got sick by my twenty two birthday. I'd rest when I would change a Lightbulb, like I could reach my arm up and take it out, but I couldn't keep my arms away from my body that long, so I had at the rest to put a new one in. Six months earlier, I'm working out and, you know, going on spring break with friends. I just blew up. Bam. So that's sort of you know, that's the condition I ended up in rather rapidly. Is is from normal, relatively normal college student to disabled disaster. And medical workups didn't reveal any more answers for me than they did for my mom and aunt. So, Doug, was it? Yes, it was there. Did they? But did they see similarities? Did they? Did they...

...confirm that? Yeah, what we don't know about your mom and your aunt is is definitely the same thing that you that you have. So we had found a doctor who cared, and that doesn't mean that he had any answers, but it did mean he cared. And I'd seen him when I was fourteen and again when I was struggling to do sports in high school because I didn't seem to have the durability to do so, you know, and now I was sick and when I came to him it was pretty clear lear because he'd seen my mother and he was an adult physician and end the chronologist and an internist, but he had treated my mom and he was able to see, yeah, sure, looks like this guy's fallen off the cliff to the past robe. So we know. So we were believed in that sense. So when you're in that you know that. You know. We talked about the cheese greader and you know, do you ability and the pain? Were they able to do anything in terms of you know, I guess when I have the flu or a virus or if I have covid nowadays, I have something that they can't necessarily cure that, but they can treat the symptoms right. They can give me certain things that will relieve the cough or relieve the things, or some steroids or things like that. Where there anythings they were able to do to help alleviate some of the discomfort you, you and your family were experiencing? So this is part of the problem, as my mom's muscle rigidity and pain were considered refractory. In other words, she's given muscle relaxers and they didn't work, and I really because you give them to somebody else and they're knocked out. There, you know, they are a noodle, and there is they're passed out and there and so we so the other problem is is that some of us, you know some of the people in my family, are pretty sensitive to medications. So you can end up on a medication to try and improve a symptom and now you're stuck on it because it's very challenging to get off because people, when they begin a medication, they beginning in the hopes that it will improve their life. And what they off and skip is the discussion how and when would I stop this med so when the doctor tells you this takes a few months to build up in your system to work, it takes a few months to get out of your system, to Lee, you know, like holy smokes, now you spend half a year on one loop of did this help? Know? Well, okay, I've got three more months till it's out of me right. Or what sometimes I hear too, is going back to here. I like your analogies. It takes a few months to get into your system and work, and it begins to work, but now you're having side effects that are worse than in some cases when you're trying to cure. And so, like you said, you say, Hey, listen, this is getting better, but I can't live with all the other bad stuff that this is giving me. And then you say okay, well, well, now you have to Wean yourself off of it. And so I had watched my family fail with this stuff and I wanted to understand what was wrong as a scientist, as somebody who was heading in, you know, going to be a PhD in biochemistry or wherever I was headed for a notion of saying we got a we got a blue thing and it helps you and nobody knows why that, you know, and also it's hard to stop, you know. So I so I was able what did help with thyroid medication. You know, we were able to get some tests to show some anomalies and my family was very, very, very sensitive to the medications and it did help and it helps with some of the pain and it helped prevent some of the rigidity and it helped everyone in my family, but we all remained very sick. And so but when it came to the the sort of why don't we try this, I've thought and little, very little, about it. And here's what I want to give you. I avoided all of that, right, you know. So one thing you'll find in my journey that that rare disease people or rare cases have to deal with is the balance of seeking care versus avoiding care. And most people are not in the business of avoiding care. Right, you don't break your leg and say I don't know if I trust the cast. But I was constantly on the lookout for things like a test that would be run in such a way that it might give us the conclusion that I didn't have a problem, but not be run in a way to actually rule it out, because it was run in a haphazard or lazy way or you know like. So, medicine is looking for common things and once you're not a common thing, all they do is just keep referring you to someone in the hopes that you are common for that doctor, right, that doctor. Yeah, so, and we'll get into that, because I think that begin will later, because that comes into the advocacy thing, which is my own personal experience for my family members, feeling like you're going to the primary care and say this is the thing I'm experiencing and the primary physician says, Oh, ender chronologist, oh, drheumatologist, oh, you know, and and it's that referral thing. So we'll kind of come back to that, which is where's the advocacy? And I know this is a big part of your passion, but...

I'd like to stay on the journey, the story. Yeah, so here you. So, here you are, your twenty one. You're not of doctor, no, you are. You are a good student. You as a as an interest in science, yes, obviously, and and and motivated through the passion you had to help your mom and your aunt. But so tell me when you decided, hey, less, I'm going to nobody can figure this out, then I'm going to take the bull by the horns and take control of this thing. Where do you start? Right, so tell it to talk about that, right. What is day one look like? And where do you go? So the first thing I did is I didn't distrust doctors. When they said I didn't have MS, okay, when they said I wasn't dying of a heart problem, okay. So what I did is say, look, if the doctors can't find it and we know that it's not something common, maybe it's something rare. And if it's something rare, or maybe it's something nobody like, people don't seem to maybe I'm not one route. The first that was the first step, is to realize that doctors were effective at ruling out lots of stuff and that that was important. And then we were left with something else. And the next fear comes in in that maybe there's no room in the world where I can walk in or be pushed in in a wheelchair and the person waiting for me has the answer, you know, like a jeopardy question. You know, boom, we know the capital in Nebraska, we know. You know, like maybe, maybe that's not it. So I'm left to say my first job was with a guy who who started a mail order catalog for fly fishing stuff and I'm boxing up orders for him and I'm learning to tie flies in high school. And basically he said to me, if you want to make what everyone else makes, you can do what everyone else does, but if you want to make something different, go ahead say that again. If you want to make he means salary, but you know, we're just talking about life. Yeah, if you want to make what everyone else makes, you can do what everyone else does. But if you want to make something different, you're going to need to do something different, and I love that and I took that and applied it to my health situation. That going to doctors, showing up as a basket case and say I'm you got any answers for me? You know, like that this was not working and it had failed my family and and and I don't know, I you know, I was a little dramatic in the voice there. I don't know that, you know, I don't want to rub anybody the wrong way. I was very scared. But what was clear to me is that nobody was just waiting to fix this after decades of failing my mom and my aunt. So I decided I would try to take the lead and I would try and find answers where we couldn't. And if I likely didn't have something common, then maybe I had something rare, and so I would look for things that the doctors might have missed and I had no idea what that entailed, but it was the first step to succeeding, was to at least say, Hey, man, maybe this isn't common anywhere. Like it's not that people don't have it, but it's just not run of the mill for anybody. Let Start Looking right. So now I'm reading, Yes, I get, I guess, instead of the process of elimination, which is what the doctors were trying to do. Okay, it's not MS, it's not cardio. It's like you said. You're sitting there saying, okay, let's look at some of the thing, the unlikely things it could be. Yeah, and start to look at those things. So let's just start reading about physiology. So let's just start reading about physiology, like let's let's not get caught up in the notion of what's the name of the disease, but like what are the symptoms telling us? What is this? Because the things we would describe weren't common enough that they were, you know, steering doctors to immediate solutions. So let's study this stuff. And so it became a process of living with my health and trying and studying my symptoms and then studying physiology and looking for things. And I'm year into this and I run across this passage in a book, in a two thousand page end of chronology text that basically says underactivity or overactivity of the sympathetic nervous system, which uses adrenaline. Basically, you know, looks a lot like underactivity or overactivity of thyroid hormones. So too much thyroid looks a little bit like too much adrenaline. You know, too little thyroid looks a little bit like too little sympathetic nervous system activity. And to tie that link even further together, if you have too much thyroid hormone, one of the first treatments they give you is a Beta blocker which blocks adrenaline. So this I run across and I had run into a moment where a doctor said to me, you are symptoms changed too rapidly to just be accounted for by a thyroid problem. And so adrenaline last ninety seconds in the blood, you know, norpen effort, an Epeneffer, and they last ninety seconds in the blood. That's the half life. So you know that's faster than in so I started saying, Gee, I wonder if there's a whole class of disorders that involved dysfunction of...

...the autonomic nervous system. And this is the year two thousand, so you can't just go, you know, pull up a bunch of stuff. People get diagnosed with a condition called pots off and now, but getting diagnosed. Then there was nobody in saying Louis, that had heard of the darned thing. You know. So I'm in the position of theorizing the existence of a class of disorders. I pull these pieces from physiology texts and Endo Chronology text and I assemble it and I go to the doctors and I say, you know, I think there's a class of conditions that would involve dysfunction and they would create symptoms like I have problems with your heart rate, blood pressure, your metabolism, your digestion, and you know your sweating and your heart is pounding, and this is there's might be an entire class of disorders and I have whatever one of these would be. And they said to me, problems like you describe don't exist. I was just going to say so, and how is that received? So here you can commit and say I've done some homework and here's my thesis, right, you know kind of thing. Take a look at it and tell me what you do. And you said it and you just said it. But they basically said they said problems like you described don't exist, and I said, but they could, because see, doctors practice from experience. So if you don't know a specialist who treats a condition. You know, what are the chances there's a whole that there's just an empty office on floor six and neurology and it ought to be filled with an autonomic investigator, but nobody's heard of it, like, you know, like so. So they're running through their mind and they're saying, we don't know anyone who treats conditions like this regularly, and so problems like you describe don't exist. But me, as a scientist, I was coming at it from what are the chances there's a complex system in the body and that it, you know, nothing could go wrong with it, or that it could only fail in the three ways that show up in the textbook, not the you know, like we've exhausted the ways in which this unbelievably complicated system can fail and create symptoms. And so I was on my own path and I had and they basically it was a stalemate, because they said I multiple doctors said that to me. And eventually I get a computer with Internet access and within a month I'm able to locate a nonprofit devoted to the kinds of problems I'd theorized existed and been told. Didn't wow. So the were now we're AL getting smaller, which now is giving you access to it. But yeah, had this been five years started five years earlier, right, you, you just have you know. He had the Internet, right. We don't know. Sometimes we underestimate the power the internet, right. But then, all sudden acts as to this information became now available to you. So I read about Google in the newspaper. Let's start there, you know. and My mother had her my mother's Google was a copper coffee pot full of small pieces that she'd been able to have to tear out of the newspaper or to have someone tear cut out of the newspaper for her, and on one of those pieces was the address of Nord, the National Organization of rare diseases or rare disorders, and so I actually used that scrap of paper to go online, before I had access to Google, because I hadn't read about it yet, and go to the Nord website and start looking and reading and see if there was anything devoted to the sympathetic nervous system, which is part of this thing called the autonomic nervous system, and there was. There was a nonprofit called the N DRF at the time. I don't know that they're particularly active today, but they had been set up because the the the lady, had gone on such a diagnostic journey of seventeen years to get diagnosed that when she and her husband finally did, they thought we can't close the door behind us. They set up this nonprofit to disseminate information on this condition, on these conditions. Right, and and and so, obviously the number of people who have this. And I don't want to sir, but but, Doug, this is genetic, correct for me and for more for lots of people. Yes, not environmental. Right, so you know the right you know there are certain diseases that can be genetic and there are some that can be. They seem influenced but by the environment that you lived in. So obviously your condition is genetic. So the the number of people affected by this because of that genetic disposition must be must be minute. So the the estimate from the director of clinical research at Vanderbilt, who was the head of the world's largest lab into these conditions, was that half a million Americans had pots, half a million Americans had an an autonomic problem involving uncontrolled heart rate that spikes when they stand. And so it was good ahead. Is Not the clinical I guess that's why we're clinical. Name for what your condition is is pots I have. It is a disorders of sill. There's a I meet the criteria, but it doesn't explain why I'm sick. Right, it explained, gives a category, it makes it clear I have an autonomic problem, but it doesn't point to a cause. Okay, so that's you know. But but...

...what was so important about that is so so he you know, again, half a man people. He called it an epidemic of recognition, meaning ones you have a framework for this. you start seeing it in patients that you couldn't explain, which is again there was a patient. I sat down at medline and I typed in tack, a Cardio Fitch, just heart fast, heart rate, fatigue, lightheadedness, and the first results were autonomic problems. The things I was contending existed in doctors were telling me didn't wow and you're like, come on, guys, you know some level of curiosity like it shouldn't be. And so so now I got the the the I got articles, you know, from the nonprofit, and I started turning to my friends in Med school because I'd been a you know, like a I've been in classes with people who are now in Med school and they could get me articles from their med libraries. And so now I had the terms of the field. I didn't have to make them up. Based on the physiology, I was calling it a sympathetic nervous system condition and now I could call it a disautonomia. It's like calling it a horseless carriage and googling that versus looking up cars or autos or you know. So now I had the way. The feel real pific. Yeah, well, I just had the right terms. There was nothing wrong about what I was saying. Right, nobody was using it. Yeah, so now I'm looking up the right things, I'm gathering papers, I'm reading. Eighteen months later, I'm invited to present at an international medical conference where I would be outlining a proposed treatment for my own condition. I'm a twenty four year old college dropout in a reclining wheelchair and I will be traveling and the poster before me was from the Mayo Clinic and the poster after me was a scientist who'd flown in from Japan. And I'm in the middle going to talk about these things, you know, and what I'd found through my own observation of my own circumstance and things that were popping up in the literature that I thought I could help tie together. Okay, so when you when you get to the right, before you get to go to do this speaking in Gagement. HMM, how did you start to get that room? Somebody recognized what you what your your thesis, your theory, your and your research, and tying connecting the dots probably the way I would see it. So now we've got a picture of what the thing is. What how did that recognition come? How did somebody who validated they said, you know what, I think you're onto something here right who had a little bit of the enough to say, you know it, let's get you out talking about this, let's continue to push this because, and maybe I'm wrong, but I think just submitting a paper to an organization saying here's who I am, I don't have a PhD. To your point, I'm a twenty four year old in or reclining wheelchair and I think I found my cure to what my problem is and somebody said, hey, we want you to be a keynote speaker. There must have been something that had triggered in between there. So I was just a poster presentation, like some other Grad student or some you know, like like any of the other presenters. So there's, you know, lots of people presenting. I had three minutes, you know, but what it was. So what happened is when the doctors wouldn't listen to me, I sat down dejected and and then I realized they're not the only kind of doctors. They're PhDs, right, and so I started reading the descriptions of the research labs, of people at Washington University, of people all over, to find people who cared about what I cared about, so that they could at least hear my idea and have a somewhere to place it instead of saying I don't know anybody that fixes it, it doesn't exist. You know, I started, I looked, and so I reached out to a handful of sign a phds and one of them got back to me and I was talking to him about my struggles and he said to me the job of a practicing physician is to treat as many patients as possible with the means and methods available. He said, what you need is research medicine right, and there's no front door to research medicine. HMM. Well, now I understood why, twenty five years of my mom and my aunt walking through doors in hospitals expecting short appointments with practicing doctors to yield attention to something so rare and inexplicable that nobody could put it into a category very well why that was a failure. So now there's no front door. So as I'm reading and doing this, and now I'm reaching out to other scientists who've written the papers that I'm reading. I'm talking to people about their work on kidneys and and the rent and Angiotenson system, you know. I'm talking to to exercise physiologists about their work with caffeine and fatigue, and so I'm talking all of these people and then I run across the American Autonomic Society, a world gathering of the doctors and scientists who care about autonomic nervous system dysfunction. And since there's no front door to research medicine, I saw that this was my front door. This was all all the people I needed to reach in the world in one...

...room at the same time, because I was never going to get to yenst Jordan and Berlin and Murray Essler in Australia. And you know how in goodness gracious was any of that going to happen when I can't get the paper in my own front yard right? Yeah, well, now I'm submitting a paper, a short abstract for this presentation and it's three hundred words. So it's not, you know, reams and volumes in a die a tribe or something. It's it's a very focused thing that says they're stuff that that that hasn't added up in the field and maybe this idea makes a little sense of it and if it did, maybe this med would help. And so, you know. So I write the abstract and I submit it and we don't know who in the American Autonomic Society champion me a little. Was it David Roberts and Ad Vanderbilt who knew of me? Was it Christmathias in London who had, you know, exchanged some emails with me and or you know, or was it just a fluke and they you know the fact that I'm DM Lindsay looked enough like md something, you know, did they just kept reading and thought, you know, guy writes like a nerd. He's are people, you know, no idea, but I get invited to this thing and I'm going to take my chance. And so I'm got a chance to talk to all the doctors in the field and I'll be there three days and I can listen to them and and so this is the big hope, right, and I go and there's just not much of a response, you know. I mean there's sixty there's sixty posters or forty posters. You know, there's three days worth. The speaker's fifteen minutes a piece on the stage for everybody's there. And they already have a lab and they already have a job, and I have an idea and no lab and no means to execute. So I'm asking them to set aside what they're doing that they are focused on and consider focusing on what I care about, which is not a great pitch, sure so, but again, this is this, is this six years of perspective, because you hope that people are ready to jump at an idea to help people that ties up some loose ends or something. And so I came home, I met the guy, you know, like the people in the field were kind to me and some of them gave me time and I made strong relationships with some but as to a collaborator, I came home empty handed and that was hard. Yeah, and as a patient there's no right answer as to what to do or you know, where do you keep going? And as a doctor, but as a scientist, you run the experiment. So if there was a chance medication x would help and there was a chance it wouldn't, and this was a new way of looking at it and it hadn't been tried on a person with a unique symptom profile, you run the experiment. And what that means is the absence of somebody jumping up and saying I will be your champion and push this through with you. Doesn't mean it was a bad idea, but means that the experiment hadn't been run. And I realized I would have to keep toiling so that if and when I could get a collaborator to join, we would be closer to the point of action. Because, let's say you want to use a drug, you don't know what dosing, you don't know what you're using it for. Something new, and so I had to start figuring out those questions. And so it was really there's no clinical trials. No, no. So so you're left to figure out how do you figure out a new dose for an old drug for a problem it's never been used for and it's on the list of drugs that could hurt patients like me if you do it wrong? So I you know, I had to go and read pharmacology studies from the s when these drugs were coming out to start learning. And and I'm I'm doing this as I'm stuck in a hospital bed unable to leave the house. Yeah, but, yeah, this is the but as a scientist, you run the experiment right. There's there's a minor detail right in and yeah, that's right, yes, that's right. Of all, doing this this is assuming that you're feeling great and you're driving at this thing right. You're you're plowing through and suffering through the whole thing as well on top of it. So so I'm too weak to hold a book right, so I have to lay on my side and prop the book open with my fist to read it. And then when you get to the bottom of the page, you go oh, because if you flip the book the next page is upside down, if you know. But I can read upside down. So I read. If I read a thousand pages, I read five hundred pages of them right side up and five hundred upside down. Wow, incredible. So I'd like to come back to some of the mental aspects of it, but you know that. But I want to. Let's keep going through the store. So so here you are. You say, okay, I think I know what I have. Yeah, and I think I have got a procedure that I'd like to try to fix this. And right now we're still at the pill phase, right, but you know so, so. So I've got. Yeah, but I think, I know, I think there's worth something trying and we'll either work or will learn. Okay, so you don't have the procedure yet, but you say, I think identified where the where the kernel of this problem that starts and I want to start to treat that. So you start to do that and and along the way here do you you know you need someone to prescribe...

...things or to help you get to those things. So does a champion emerge here, or does somebody start to advocate for you? Yeah, took another eighteen months and I got I was my life was falling a party year after the conference. But what I and it's hard to reach these doctors because, you know, there's there's gatekeepers and all this stuff and you're just calling to say, you know, like but what happened is one of the doctors had suggested a refinement on the proposed treatment I was looking at and we, you know, we tried something with a local doctor and got some some evidence that, you know, like maybe there was something here, but it didn't work very well. And and so I waited and the next year the airmary, the Autonomic Society was was meeting again and so at least on those three day or four days of the year I knew where they all were. So I called the hotel and instead of calling the gatekeeper and getting a getting to know, I called the front desk of the hotel and they patch me through to the doctor that I talked to a year earlier and he agreed to help. And and then I followed up with him because my whole local team fell apart. Everything was, you know, in shambles. I had no doctors and I call him on Cree gave me a special paging line that was only for physicians and I called him on Christmas Eve because I missed one pill at that point I was taking a pill every two hours around the clock to raise my blood pressure and keep my heart right down, and I called him because I missed a pill at six am and my heart rate was a hundred and forty, laying in bed until ate eight, you know, until it kicked in, and so I was scared and I had no one to turn to and I called him and he said come to Alabama and we will try your treatment and we will run the testing and we will document what you're probably you know, whether you have these problems, and we will work together to figure out what to do. And Who and who is that? And that was Dr h Cecil Coglin, and he he was he ran the land and you a be. There's the hero of health care if you ever yes one exactly. I mean He. He was willing to walk down the other the road with me, even just conceptually, you know, think, to think about an idea that came from a patient. And so he and I so so now we're endo with a friend who hates hospitals and is afraid of them, putting a mattress in the back of an SUV and driving me for to Birmingham so I can go see Dr Coglin, you know, and I'm laying like a rag doll, you know, as we go around turns and stuff, so that I'm you know, so that I can get there and go see him. I'm I'm in a reclining wheelchair and you know, and he runs the testing. It's very this is five years in. I've been sick five years and that's when we found evidence that I truly had an autonomic problem, because he ran the testing in a way that was going to catch enough data that if there was something, we would catch it. And so what was so special is one of the things he did that a lot of people won't is that he was measuring blood while they were putting me on this thing called the tilt table. It lays flat, then they tilt you up like standing. They take your heart rates and blood pressures. But he was also taken blood to see what, you know, what my upaneffron and Rup and Efron levels were doing, and they were abnormal and that led us to the idea that I might have a tumor or a problem with my adrenal glands. And if he hadn't run those blood work we would not have seen that. So if I had had the test run in St Louis or Kansas City or Denver, or I would have been sick for life because they weren't looking. And I chose him because I knew all the tests you could possibly run. You could set up doppler scans where they have microphones, you know, aiming at the arteries in your you know, heading up into your brain to measure blood flow to the brain. I mean they can use radioactive, you know, labeled things to to check the like. There's so many tests that you can do in conjunction with a tilt table. But what was necessary and sufficient? What was enough data to get us what we needed and then we didn't need all the extra tools, and Cogglin's facility was well calibrated to deliver that, in my opinion and in his. So he and I just happened to be like, you know, kind of soul mates in terms of how we thought about things. Yeah, so I'm wanted. So let's let's talk about so, you know, and I want to make sure we leave enough time to talk about the good works. But yeah, no, no, it's okay, it's a great time. It's an awesome story done. So thank you for continuing to share it, but let's talk to it. So obviously medication that you guys are seeing isn't doing it. So we see you guys say, Hey, there's or you, or Dr Coglin say this is a surgical procedure we'd like to think about. Let's talk about that, let's talk about what the results were from that, and then, yeah, that looks like we in through the work you're doing today. Yeah, so we came up with us. I came up with the new use for an old medicine that I hoped would halt my decline, and Coglin had special experience from working with pharmaceutical companies back in Argentina, when is when he was being trained. That gave him confidence that the insights I was seeing from my own life were relevant.

Like, he had special experience. So we tried a very unusual new use for an old MED and it halted my decline and that gave us the breathing room to find out what was wrong. And that's when we found out that there was a problem with the center of my adrenal glands and maybe a surgery would help me. And that's when we next then find out, of course, there's no surgery to remove the center of the Adrenal Gland. You can remove the whole thing or if it has a tumor, you can cut out the tumor, but there's no one doctor described it as trying to cut the peanut butter out of a peanut butter sandwich and leave the bread, and so that sounded like a bear, you know. But the doctor also said it would be an ideal surgery for certain people if it existed, you know, like he laid that out. And so now that I was on the hunt because there was a surgery that might help me and everyone thought it was impossible, and so I start endeavoring and talking to people and I'm I'm connecting with with people on various ideas and looking into do technologies and new you know, maybe the best doctors in the world. Like at one point I sent the Japanese ambassador's son to Tokyo with my medical records to meet with surgeons there because they were the most experienced team I could find at taking part of the adrenal gland and leaving the rest well, and the Japanese ambassador son was a physician, because I realize I needed someone who spoke medical Japanese to make the case, and that's a big ask. But it turned out he was. He met with me, he took my records, he went personally because he was on it. He said I wanted him help me write an email and he said, well, I'm going there and I did my residency there and I will meet with them for you. And you know, you're just when you have people, I mean, you know, I'm in a hopeless mess. I need a surgery maybe and there isn't one. But when you eventually have people who who do step up, and even if they don't, they don't succeed, the fact that there's people pulling for you in any way to you know, like for six years my bioethics advisor was the chairman of the President's Council on Biomedical Ethics. He was, you know, an emeritus professor at Georgetown and he's got more honorary doctorates than you know. Then you've got sort of, you know, moles on your body or something. I mean, this was an astounding man and he spent six years as my bioethics advisor talking to me about things like how do you talk about the ethics of a new surgery? You know, because I invented a surgery in my living room and I had to sell it to the world, right, and so that's what has so I'm spending it takes me a year and I find out the surgery is possible in rats. Well, going from impossible to impossible, dot that, dot, except in rats, is a big thing. Sure, maybe not to the doctors, but you know. So then I find out it's possible in cats and I start working with the history of Science Department at Harvard, where the surgery had been done in the s on cats, to find out how it was done. And then I find out the surgery been done in dogs, but nobody explained how they did it. And so here's this circumstance where, ninety years ago and sixty years ago the surgery was so commonly understood that people weren't even explaining how to do it in their papers. But modern human surgeons who are highly trained or sitting there saying I don't know how to do this. And so this is an infuriating mystery because the answer might change my entire life. Right if somebody had just detailed it, it could have led to a clear conclusion of what next. Yes, so now I'm working with the street, with the with the the the medical historian at Oregon Health Sciences University, because the surgery had been done there and dogs, but didn't explain it. And she said, I've looked through and I've even listened to the oral history from the doctor you described, and I talked to the biographers of the people who did the surgery at Harvard, like they wrote a two volume biography on this guy, Walter Cannon. He as a mountain named after him. He's so important. He did the surgery, he didn't explain it. So we're sitting there saying these titans of medicine knew this and now these pros don't know what to do. And it turns out that we found that the when the librarian understood that I didn't just need to know how the guy in Oregon did it, I needed to know how anybody did it, she went back and she found an article from one thousand nine hundred and twenty three and Argentina, where the surgery had been done for the first time and the guy who did it ended up winning a Nobel prize. He didn't win it for that, but that's how like. That's why it wasn't explained is you don't explain the Folesbury flop of how to jump over the high jump. People just train in it, right, you know. So this guy writes a paper that comes out a year before the Great Gatsby was published. HMM, and that paper explained how to do the surgery that would change my life. And I get this paper in the mail and then I've found a surgeon in France who done it. He's very old and he had done it on dogs. And I I had to have my high school French teacher helped me translate a letter into French so I could ask him how he did it right, but the letter was so good he wrote back in French. I'm like,...

...oh Lord, I don't know. Right now you get that translated again. Right. So those two descriptions correlated. They were they were similar. So now we had two verified ways of explaining how to do the surgery. And here's the most magical part. The doctor and Argentine of the Nobel Prize winner who had done invented this surgery and published on an in one thousand nine hundred and twenty three. He trained Dr Coglin's mentor, because Dr Coglin and Alabama, grew up in Chili and trained in Argentina. Unbelievable. So you and so you got. You got to believe you're done right. There's a little bit of Tanette. There's not a little bit. I let you, let me eleven years now. Yeah, just a little bit of Tannacia. As a you have your unbelievable and you know how I love the word. I think is grit, you know, which is in the and the new definition of Grit is, you know, is working towards something over a long period of time. You know, obviously you have a tremendous amount of grit, tenacity, obviously for for selfish reasons, and rightfully so. But man, this little intersection that starts to come together is also what what what my family likes to refer to sometimes as it got incidents. Right, it's the yes, you know, there's got to be somebody else out there looking for me that's pulling all this together. Right, and so that's what's fascinating is it's both a miracle and an example of how science works, because it's not surprising the Coglin, with the ideas and the experience he had, was drawn to me with my ideas because his were descendant from the guy who invented the surgery I needed. Well, I do go. Yeah, beautiful. It goes back to that research part of it, which is and the right they're practicing and their job is I got this patient, I got that finite period of time and I got to go to my next patient. But obviously, when you found the research side, you had to find a person who was interested in something and they wanted to you know as much as you did. They wanted to solve the puzzle as well, right, and so exactly, they they were going to be as tenacious as you were about finding it for selfish reasons. They were tenacious because they love the science and they love the research and they got they got a really lovely deal. So, I mean I worked with people from Cleveland Clinic and pain and all over, and what was special is I never came back to them with the same problem. Right. I mean, if you're training Grad students, they spilled the same thing again. For me, if I was on the phone with them, it was because the answer wasn't written anywhere and only they could answer it. And so it was gratifying to for them to plug into a situation and have me come back a year later and have used what they told me to make progress, even if it wasn't decisive progress. So we had a lovely relationship with with with you know, I ended up working with thirty five faculty at Twenty eight places, and and that was sort of the you do one, I'll do ten, but I need your one because no one in the world has written the answer to this or I'd have found it right. And that was the confidence we could bring to these interactions. And so eventually it still takes US eighteen months to build the surgical team because again, some goofball cooked up surgery in his living room. Even if he's right, it's going to take a little while. Lass going to ask right. So obviously, now how do you find a team who says okay, Hey, I'm skilled to do it and be I'm willing to do it right. This isn't, you know, looking for somebody who does knee surgeries, you know, to do something like this right. So you have to find that and and it was an evolving circumstance. So I tracked all the surgeons in the country capable of doing this and I tracked where they'd trained, and I try, I mean I tracked everything about them because I knew needed to know who influenced each other, because one guy in San Francisco could say no dice and I could lose Cleveland and and and Columbia and a bunch of places all at once, right, because they all trained together. And and so I had to understand all of that. And what happened, had bit to be occurring, is that robotic surgery was moving into prominence and the surgical oncologist at you ab had now a series of twenty or so robotic Adren electomies under his belt. And we were able to go back to Coglin and say, can you approach this guy locally, who you've worked with for decades, who has a new, you know, a new circumstance and who wasn't a particularly strong candidate a few years earlier. Maybe, you know there were other more experience addrenal surgeons, but he had had done this series on robotic adrenal electomies. Didn't that put him all the sudden in a pretty strong position? And he agreed to do the surgery. And so I got the surge. And so again it's cogglin pushing through. You know. Yeah, no, I'm sure we had to be right, because here's the thing. We getting all this stuff doesn't help. Unless you were actually right, I'd still be sick. You know, all the favors in the world, you know, or or or or worse. But I'm sure, and yes, but one were at you didn't care. I'd spent years and I would. I I knew I was playing for a lifetime...

...or results and I had done at the work I could do to say that this is the move and I live with it, good or bad. Yeah, so you go to you and being so, you be and they do the surgery. Yeah, and and how long until you say this worked? Or how? How did Long D till you knew? Yeah, so wings of hope is a nonprofit that flies people to medically, does domestic medical transport and then does overseas stuff too. And they put me on a private small prop plane with a nurse and they flew me straight from a small airport straight to Birmingham, because I couldn't fly commercial and lay across this. I was just too sick to go any other way. So they got me there, I get the surgery, they fly me home. It was free. It was a one page application. Arranging for a free private medical flight was the easiest part of the whole process, which I was stunned at, after every tooth and nail for every band aid, you know. So they take care of that. I come home and I don't know whether the surgery worked and my medications are making me six so I'm reducing them, I'm coordinating with the doctors. About three weeks out, I can now sit for three hours instead of the length of a meal, and I started being able to walk further and so, you know, like and I'm walking, and I mean, you know, a hundred of eight instead of visibilitation to well, yeah, so the so there's that's what was so important about this first notice is that there was nothing I had done and nothing anyone could do to take me from be from having an the ability to sit for about fifteen minutes and then in three weeks make it three hours. HMM. My Body just changed and that's what was so important to it to anybody who says all it was was rehab or anything else. My physiology changed and that enabled me to start trying to build and in those first hundred days there were sixty seven medication changes. Wow, which is astounding, because doctors make big, gross changes, cut it in half, do this. Yeah, but I let the body lead the dance, right. I knew that if I was behind the curve, if you have one foot in the water and one foot on the shore, you know you're at the shore of the lake, right, if both feet are wet or both feet are dry, you have no idea if you're blindfolded. So in this circumstance, I wanted to be behind the curve, having predictable symptoms of needing to reduce my meds a little bit. And then I made lots of small moves. The doctors gave me a ranged to operate in. If I had made big moves, we'd have no idea whether I was sick because I cut too much or not enough for my boy. So I thought through how do you manage this unprecedented circumstance where I'm the only person in the world in it, and that's what I came up with with these kinds of its, sort of innovative plans. To say, the doctor gives me a range and within it he or she knows I'm safe, and then I'm managing it to understand the situation. And while I'm doing that, I met with a friend who was a physical therapist, because remember my mom, you can't give her a hug, you can't touch her, she gets muscle rigidity, she doesn't heal, like the therapy had destroyed my family's health. So now I'm chast tasked with building capacity, even though and understanding whether it's truly safe for me. So I had to relearn how to walk distances, and I'm doing all this stuff and and it was an amazing time. I went from being able to walk about fifty feet on the day of the surgery to a hundred and thirty days later, I could walk out of my house in January and walk over four miles. Wow, and that occurred. That occurred a hundred feet at a time, you know. Yeah, and then occurred five hundred feet at as well. It was kind of ironic because that's about how your journey worked, right. It was assumed that's how it was about, you know, taking incremental steps to get to the get to the end of the stage. Yeah, it's incredible. Du What a story and what a what a testimony to you and your perseverance and stuff. I um one or two more questions and then let's just jump into what you're doing today. Yeah, we're running a little long on time, but I know. Sorry, but that's all right. Yeah, it's a great stuff. The WHO couldn't want to listen to this? But so, so let's talk about with this. So the surgery clearly is working. You're getting better, you're fight, you're starting to have a normal standard of life. Surgery for your aunt and your mom. So I got to surgeries because there's two adrenal glands. Right. My mom was in a nursing home and she spent the last nine years of her life in that home, in one room, in a bed. She was never able to even leave that room because transporting her to the nursing home hurt her so badly that she wouldn't survive another transport. So she was too sick to get to the hospital, let alone with stand the surgery. But in the course of my work I developed new uses for five existing prescription drugs and when she was given less than six months to live, because of the treatments that were based on the work that I did, she lived another...

...eight years. Wow, phenomena. And my my aunt, she's healthier in her s than she was in her S. and so she's in a position where she still has problems and limitations, but for her betting her life on a surgery that's hard to go through. Compared to like, she's healthier now than a year ago. She's healthier a year ago than she was two years ago. So, given that her health is on a trajectory that doesn't match most people in her era, she's saying I'm going to stick with the meds that Doug is, you know, like and she's she's also chosen not to have the surgery. Sure, no, it makes sense, but obviously your identification of what was really causing this is what is a net. Yes, weld medication and if we can do medication and not go into the surgical pursuit, why not right? Why exact? Not Cut for the sake of cutting? So that's great. So, so we've used what we learned between me and my mom to help my aunt, because I had the surgery and needed meds and you know, my aunt has improved with just meds. And when I tried the meds, if you didn't try them just right, I mean it was open sessime. You know, if you did it wrong, it made you worse. Yeah, so it took real finesse to to fare it out how to use new meds in an old old meds in a new way. Yeah, so, yeah, so that's a you know. So that's so, that's how the my mom passed away in two thousand and sixteen, but I was back in school and she knew that I was just getting ready to graduate and she knew that I was okay and, you know, she was alert and kind and she was such a model of grace of how to live in hard circumstances when, you know, she didn't pit her suffering against everyone else's. And somebody, you know, like you think you've got it bad, let me. We would see a story on the news and and you know, like on some story, you know, and the story ends with the happy ending, right, the person's limping home after whatever, and and my mom would always asked, you know, do you think they're in pain? You know, and she just she was she under stood that she was a model of grace in difficult times and she set such an example for me that it was easier for me not to wallow and despair and complain when I was able to see somebody I cared about who was suffering worse than I was and was able to bear it with with dignity and grace. Wow, just so powerful, Doug, I appreciate your vulnerability and opening up to us and sharing this with us. So let's talk about so, dougs, dougs on the mend. He's walking, he's going, he's moving, he's got it, he's got a new lease on life. And so let's talk about where you're focusing your time. I mean, obviously you like we talked about that tenacity and that ability, but I'm sure out of all that bore a passion that you're now pursuing. Yeah, so I started giving speeches about innovation. You know, it took it's a real challenge to come to grips with the scope of loss, of being sick for fourteen years, getting sick of twenty one, being a college student, walking out of your house and your mid s and everybody's built lives and all you felt like is a rat in a swimming pool, you know, for the whole time, and you finally got out and you find that walking didn't fix everything. And so now you've got this challenge of saying, how do you build a life. And so it took at it took a real period of adjustment, you know, and and I wrote and wrote because I was writing a book and, you know, on and but the book, it turns out, was a lot of me, you know, processing what I dealt with. I went back to school and I graduated with my degree in biology and I began working as a speaker. So, you know, I got to speak, for to to a prominent financial regulatory agency. That was my first professional speech. I was the keynote speaker for their innovation event the same week I graduated, and so that was neat and I got to go east and meet a lot of the doctors who'd help me and I'd never gotten us to meet in person and we talked about my future. Should I go to school? Do I start a business? What do I do? And and so I would give speeches and travel and, you know, people would come up after the speeches and they'd say, like, great speech, and then they wouldn't say come talk to my company. They'd say, I want to tell you about my, you know, my daughter's, you know friend. I want to tell you about my my you know, my neighbor. Want to tell you about my my spouse, and so I was, you know, eventually I started listening to what the world was asking from me, and people love a good inspirational story and and and tips on how to, you know, make things happen at work or how to better engage with patients or something. But also, I seemed I have acquired a big process, big a large amount of process knowledge as well as medical knowledge. I'm not a doctor, but I was able to help steer people in to get the right kind of care they need. So half the time you're trying to tell them what kind of doctor they need...

...to see and maybe what of the symptoms they shared they need to highlight, you know. So I sort of you know, I ended up going to a place called Stanford Medicine X, and so this is at Stanford Medical School and they hold, they were holding annual conferences to have the most important conversations in medicine. And what was so different is that they put patients at the center. So, you know, they were there. There was government there, there was, you know, all these different stakeholders, but patients were there and and and truly integral to the process. And so we're working with people like Ideo and, you know, all these amazing organizations and that tapped me into a world of advocates beyond what I was doing, because I felt very much alone, you know, like somebody from the Xmen or something. You know, I'm out here doing you know, my life story doesn't look like anybody else's life story. And then you meet other people with these who've been through these SAGAS and are trying to contribute and try, and we're trying to find answers. Yeah, yeah, and that too, and trying to figure out how to budge a system, because we're there to figure out what what needs to be talked about and what needs to be done to create a healthcare system that works better for the people in it. And some of those are people struggling like me, and some of those are just, you know, run of the mill problems that you know, that that breakdown around you know, certain demographics or geography or something else. You know, you just so we're looking at disparity and looking at at where people get stuck and so, you know, eventually I I set up a business as a personal medical consultant. So I am of a small group of people can can engage me. You know, I take one to four clients a year and I basically join their family and try and budge what seems to be an intractable medical case, something that's complex or rare, and we see, you know, can we get somebody stuck in the medical system unstuck? Right, and you know that lets me help people in an indepth way where it's that same notion of like, how many rocks can you move? Okay, now, how many rocks can you move if you did it every day for a year? Yeah, well, and obviously you're acting as a tour guide because you've been through it, right, so you can hopefully help them cut corners and say, you know, that path is probably not going to lead anywhere, but let's try this path in this path. And you know, I'm sure you've learned paths you didn't think would would turn out did and the paths that you thought were going to be this is the money goal, this where I'm going to go, where dead ends right, and but that Barney that you were on is really where lies a ton of value. Yeah, so the consultancy is probably giving a lot of hope to individuals who say we feel hopeless, and you can say, Hey, I felt hopeless too. And but let me tell you about my journey, which you just shared with us so eloquently, and but also about this is things we can do. Let's try to pursue this avenue. Let's find who are the leading doctors in the area there and let's try to find as you as you took you a long time to figure out. Let's stop to let's stop looking at the practicers, the practitioners, let's start looking at the researchers, because that's where the that's the path would that will get us to where we probably need to go. And let's build documents that are deliberate and help practicing physicians get up to speed on something that they can understand but that they're never going to generate for themselves. Don't have the time to do right. Exactly. Yeah, so you're you know. So it's a constant process. I work with doctors, right. There's none of this like, oh, screw the medical system, they're all a bunch of like you know, I work with doctors and I'm chasing and I'm working with clients and and you know, I'm going with a you go with the family to Bao clinic when they go and now you're in a position where, like, you're in the room and the family goes, boy, that doctor sure seemed like a jerk, and you go, I could tell this doctor was listening for the following reasons, or I could tell they weren't. And we all get to decide for ourselves. But there's a real you know, there's a real like, there's a there's a potentiating factor where I'm able to work with people to try and make you know unlikely things happen and to try and partner with experts to get new results. Well what? And I love it that. So you're not just advocating for the client or the person who's got the challenge your and you're not saying the system's broken. The systems things. You're saying they let's we're gonna have to educate here or we're going to have to get them, as an advocate to in other word, you know, because without both sides it's not going to go anywhere. Right. So you know and I think, given your experience, I wouldn't be unrealistic for you to be bitter and angry at the system that failed you. But you just said that doesn't result in anything, gets me nowhere. So I got to go figure. I I got to go figure a different path, and that's what I love about the grit and the resilience with in your within your...

...story. To put on my tombstone. There was something to the complaints he had. Was Not really what I was looking for, right. Yeah, like I was. Yeah, and so we're in and doctors are really trying. The challenge is is if, if the if the doctor's appointment is set up to deliver a certain thing, which is, like we've said, sort of, you know, treating as many patients as possible with the means and methods available. I mean if a doctor has scores of people to help and can help them but gets sidetracked on a wild goose chase for months and months, that's not serving the mission, that that that the doctor is serving. There's just not other people who are mcgutt medical mcguiver, you know, let me chase and build and figure out and you know, and so that's sort of so I'm doing something in addition to you know. It's not. You know, we're looking for what's not there and saying, God, am Mental Ris Right? Yes, where are we stuck? And with the tools that exist, we're not getting unstuck from it. What can we apply to get unstuck so that the system starts working again? Yeah, and so that's so that's what I'm doing at the one on one level, but that's also just helping a couple people and there's so much going on. One I got. What was so awe struck when I got to work for those years with Dr Pellegrino, the Georgetown bioethicist, is he had an integrated philosophy of medicine. He had a mindset of what it meant to practice medicine in a way that was you know, that was good and he was able to apply that at the individual level, helping me, and at the societal level, trying to craft policies and and at all levels of organization in between, as a doctor seeing patients, as a, you know, department head or a hospital chief, for he was able to take this integrated philosophy of medicine that was very much focused on like he could say it better than I could and I was the one in the bed right and that was really beautiful and stunning. And so when I saw that, I realize what I want to do is the same thing that I've learned so much from him and I've gotten to practice, to to spend time with these great practitioners and scientists and I want to be able to bring what was special about these pieces to more parts of medicine. And so that's where I'm doing. Other things that are at a larger scale, where we're either working at the university or the citywide level, at institutes of public health, or at a national level, as like co chair of Cory's rare disease advisory panel. So you know, there are these organizations that I'm now a part of and put time and effort into to try and create change so that when patients go into the medical system they're greed with a system better set up to serve them. Yeah, right, and so, and I love that because it's not it's you're not just becoming the adrenal advocate, for lack of a better term. Right, you're seeing, hey, this it was the process. It could be a dream all, it could be pituitary, it could be cardio, it could be neurological, but when there's a rare disease and we've identified that this is something we don't see in the mainstream, we've got to create a process to run this through and it's not the mainstream process. It's a deviation from the mainstream process. But we've got agree that so people like yourself do not have to spend half your lifetime trying to crack the code, that there's a way to expedite this through a through a medical path that is more expedient. Did I get that right? Is that? Is that kind of sense of what you're trying to think? I think that's a lot of it and some of the other is just just pure health system, you know, like it's not rare disease focused. You know, we've met with covid researchers or covid vaccine researchers. You know, I was an advisor to the NIH is active one, I am. So they're their trial, you know, testing immunomodulators to help host spitalize covid patients, and we were there as part of a community advisory board to help them understand who they were meeting at. You know, they had a study right how to what are the implications and what are you know, and so so some of its rare disease and some of it's just trying to embody or live out or create a better shake in the medical system in total, where the kinds of ideas that Dr Pellegrino was able, you know, as articulated, are able to be lived out better. where? where? You know, I mean just it's so powerful. My aunt was so afraid of going to doctors for so long, and I said, you know, there's a patient's bill of rights, like you have that when they want to take your blood pressure, you can just say no. Right, you don't have to say no, because you don't have to, you know. And like, and this was these kind of things end up game changing. Yeah, you know, for people to know. And so you so you're trying to you know, the doctors would say it. You'll say, what if there was this, and they'll say this exists, and you'll say, yes, that's you written of what you want to tell people. Right, you need to write it...

...so that it tells them what they want to hear, you know, what they need to what they need to hear, right, yeah, it's so it's structured in a way that addresses their questions. You know, like like this study is on top of the standard of care. It's extra care. It doesn't mean you're getting any less care than anybody else. This is something extra if you're interested. Like that was important, and so that wasn't necessarily, you know, intuitive or apparent for that for some of the covid stuff, because it was like, you know, people are going to go, I'm going to take an experimental drug instead of getting what works, and you're like, you're getting the standard of care and we have an option to see if it's better to go higher, right, yeah, so these were really like, you know, like so it is, it's it's the rare disease part. It's helping people understand that the rare disease community is a community, because each of us is often focused on our unique rare disease or the associated conditions, and so the most active people are the furthest out on a limb and, you know, and and specialized. And you can lose sight of the fact that there's twenty five to thirty million rare disease patients in America because each population is small, right, so they don't have a voice, right. So that's what I'm trying to build, is to raise up rare disease as a health disparity and a health equity issue, because now that there's this momentum for addressing these because we're, you know, when you help eighty or ninety percent of people, like that's pretty good compared to where we used to be decades and deck, you know. But now if we're in a position to say we can, we can, we can do better, you know, like we should also try to do better for the rare disease community, because the outcomes in rare disease are much poorer than in any population. I'm aware of sure. And and to your point earlier about the medications and the thing, the byproduct of the research of trying to solve for the rare disease and things, there's so much additional beneficial you know, all it exhaust you know, that comes out as a process that is so beneficial to that it's it's definitely something that needs to continue to go to go through. So does one of the most so let's zoom in on that for a second. So in science the most interesting thing to study is the thing that's like everything else except for in one way. And now you get to study it compared to the norm and you get to learn about the norm by learning about the exception. So when we study rare diseases and learn how they work. We learn more about how everything works. Right. It's not just okay, it's not like learning how to spell a weird word that you'll never use or something like right. When you learn how something works in a rare disease and you now compare it to the existing body of evidence of how the healthy body works, it can lead to any number of innovational number of things. Right, exactly. Yep, wow, awesome, really great show is people wanted to get a hold of you. We can put some stuff on the website, but dug if they want to learn more about your body of work and the great work that you're doing with University of what you know, George, Washington University and and and and pretre coury. Yes, we're how can it looks? Yeah, let's walk through that real quick. So, so there's Washington University in St Louis, which is, you know, a top ten med school, and and and very high in the research rankings in terms of the amount of research that it does. And I work with their institute of Public Health and Their Institute for Clinical and Translational Sciences and we try and bring community needs to the researchers and researchers, you know, information and needs to the community to sort of build a bridge that's better than anyone has ever had and we learn about how to do that and share those best practices with other organizations. So then there is Pecori. This is the patient Centered Outcomes Research Institute. So this was created by Obama Care, because the NIH funds things and you know, the National Science Foundation Might Fun things and if there's various places that people could get funding, but the pain. But pecory funds studies aimed at something called Comparative Effectiveness Research, which helps doctors and patients decide do I go with treatment a or treatment b? Test A or test be? Pecory is designed to help shape care at the bedside for the benefit of the patient. And so part of their function is in rare disease and that's where we try and say how do we create a world where we fund studies that either lay down great pathways for how to do other rare disease studies or get us great answers for some rare diseases? And so that is a really powerful organization in the sense of what it's trying to do for patients because because it came with the dollars. It's given out two point four billion since two thousand and ten...

...and because it comes with the dollars, people listen. Yeah, and so when it lays down a path right, people can actually adjust to it. So that's how peccary tries to make a difference, is by backing up good ideas with actual funding. And so those are the sort of the bigger places I work with, you know, and and there's, you know, Stanford Medicine X is something people can look up. It's a periodic conference, but it's a group of people that have a philosophy about patients beings at the center of medicine. But my work is, you know, you can go to Lindsay Centercom and Mine Lindsay with an Ay, so lndsay Centercom, and that has information on my personal medical consulting. And we also gather up people because when, you know, when people sign up, what it's saying is they think they have something unusual, they've struggled to get care and that's what makes them a commonality. And so we're hoping to build up a large enough database of people who have this in common to study where they get stuck in the medical system and start and maybe release some information that helps shape, you know, reports and stuff. But right now I'm working one on one with clients and have some openings and I work one on one with clients over the course of a year to try and budge tough conditions. And you know, it is a it is, it is, it is, it's a it's a very intimate process in the sense that a lot of it is about emotions and how do we manage things and you know, but a lot of it's chase in science, right, or it's at Ors, I like what you say, or it's how to get the stuck unstuck exactly. People are stuck and that's the challenge is how do you get unstuck right, and and and that's sort of what I've been able to do in a lot of different cases and what I hope to do for clients. And you know, that's it's something I love and as I learn about it, I'll eventually be in a position to share more broadly patterns that have developed. But at least for now were you know, we know that we're doing a good thing because there are people in school or people at work or on vacation who couldn't do anything before. Yeah, so fighting the good fight. Well, so thank you for sharing your story, thank you for continuing to be an inspiration to I'm sure many and providing hope. You know, I'm sure that you know that that that was. That's an unbelievable period of time for your ability to stick to it. And you know, I'd love to come back at another time and talk through the whole mental aspect of it, the grind, the days that were hopeless, the days that were, I'm sure, extremely difficult, and and and how did you work through that mentally? Two kid to stay with it, because the the the perseverances is phenomenal, but obviously all worth it, as you're as you're living in with that, in a much better state than you probably thought you might ever see. So as we and as we just kind of close out, you know, I'd love to hear so many, probably, but in you mentioned several of them through this conversation. But WHO's your hero? Yeah, so we're going to leave people with a definition of hope that they can rely on, because you did spot like that and it's very important. So hope is the belief that something positive can happen, and that is an orientation it is a mindset. It's not just a specific hope. But when you're open to that you'll see opportunities for good things to happen. So that's what's so essential about having a definition of hope that's compatible with hard times. So hope is the belief that something positive can happen, and one of the most hopeful people. You know, my personal hero is my mom, but when it comes to medicine and practicing and clinicians, Dr Coglan was such a model of of of clinical courage and of the the sort of joyfulness that you can bring to struggle. I mean, when he and I talked on the phone, we just let it sounded like we were laughing. If you didn't speak English, you to thought we were just old friends talking about anything, but we he was able to show me how to be assertive while still being gentle and kind, and he was such a he was such a stellar clinician who also made room for me in his life and his heart that that it's easy to pick him as a healthcare hero. Wow, yes, I with that without a doubt and we love that. You know courage and you know being a hero sometimes isn't being better at anything else. It's just having the courage to do something that others wouldn't do. So I appreciate the shout out for that, Doug. It's been a pleasure, it's been inspiration, it's been exciting and I know the listeners are going to get tons out of this and we'd love to have you back and continue to talk about that mental resiliency that that needed to be there, because I'm sure that was...

...a big part of the story. And but thank you again for joining us. That sounds great to thank you for having me so much. You've been listening the heroes of healthcare. For more, subscribe to the show in your favorite podcast player or visit us at heroes of healthcare podcastcom.

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