First Ad<\/sub><\/strong><\/h2>\n\n\n\nSeason 2, episode 12: How Doug Lindsay Invented His Own Surgery.<\/p>\n\n\n\n
DOUG: So my name is Doug Lindsay. I\u2019m a keynote speaker and a personal medical consultant. <\/p>\n\n\n\n
POGUE: Probably not what you thought you would be doing as a little boy growing up. <\/p>\n\n\n\n
DOUG: Yeah, I loved science and animals, but I certainly, you know, I didn\u2019t imagine that this would be my path. <\/p>\n\n\n\n
The path began in Missouri, where he grew up. In high school, he was an athlete\u2014he was on the track and field team. He thought maybe he\u2019d become a biochemist someday, or a writer for \u201cThe Simpsons.\u201d <\/p>\n\n\n\n
But he never made it that far. One day in 1999, something went seriously wrong with his body.<\/p>\n\n\n\n
DOUG: I took a job doing summer biochemistry research at the University of Kansas after my junior year in college. And soon after arriving, you know, a week or two, I end up with mono. <\/p>\n\n\n\n
That would be mononucleosis, the virus that gives you fever, sore throat, and swollen lymph glands. It\u2019s spread by saliva, and it\u2019s very common in teenagers\u2014thus its nickname, the kissing disease.<\/p>\n\n\n\n
DOUG: I spend the summer resting and recuperating, hoping to go back to college and start my senior year. <\/p>\n\n\n\n
Spoiler alert: He did not have mono. On his first day of senior year, something hit him that made that very clear.<\/p>\n\n\n\n
DOUG: I came home from classes and laid on the table with the room spinning and my heart pounding. And about 2 hours later I was able to crawl up into bed. And I had no idea\u2014I had no idea what was going on. But what I knew was it wasn\u2019t just mono. <\/p>\n\n\n\n
POGUE: What are the symptoms at that stage? <\/p>\n\n\n\n
DOUG: I\u2019m sweating through several undershirts a night. You know, my heart is pounding if I\u2019m active, but I\u2019m\u2014and I\u2019m exhausted all the time.<\/p>\n\n\n\n
It felt like someone had run a cheese grater over my muscles. You can put a piece of loose-leaf paper on my chest and watch it flutter because my heart is beating that hard in my chest, you know? <\/p>\n\n\n\n
And I was so tired. I\u2019m laying on the floor, breathing heavily as my heart pounds, and it\u2019s like the floor isn\u2019t low enough. <\/p>\n\n\n\n
I\u2019m six foot one, 21 years old, laying on the floor in the living room. Laid out like a chalk outline in the middle of the living room. <\/p>\n\n\n\n
By my 22nd birthday, I had to rest when I would change a light bulb because I could reach up and take the bulb out. But I couldn\u2019t keep my limbs away from my body for long enough to put the new bulb in. And a 22 year old man\u2014that\u2019s not how it usually goes. <\/p>\n\n\n\n
Doug\u2019s first thought was probably your first thought: See a doctor!<\/p>\n\n\n\n
As he says in his TEDx talk:<\/p>\n\n\n\n
DOUG: My life was a disaster. So I turned to the doctors for help. I saw a series of specialists, and they couldn\u2019t tell me what was wrong or what would help. <\/p>\n\n\n\n
The best guess they had was that something was wrong with Doug\u2019s thyroid. <\/p>\n\n\n\n
The thyroid is a tiny organ in your neck, shaped like a butterfly. Your thyroid makes the hormones that control your energy\u2014and therefore your breathing, heart rate, weight, digestion, and moods. <\/p>\n\n\n\n
So they put Doug on thyroid medicine. It didn\u2019t seem to do much for him, or for his mom.<\/p>\n\n\n\n
Oh, that\u2019s right\u2014his mom.I somehow failed to mention a tidbit that\u2019s fairly important to this story. Doug Lindsay knew two other people with this illness: His mother and her sister, his aunt. <\/p>\n\n\n\n
DOUG: And so growing up, I had, you know, a sick mom who, you know, couldn\u2019t open the front door of our house and who I couldn\u2019t give a hug to. It was a very challenging time, because no one could explain what was wrong with her, but she was terribly ill. <\/p>\n\n\n\n
A severe illness doesn\u2019t affect only you, of course. It complicates the lives of everyone around you. And Doug\u2019s family dynamic got very <\/em>complicated.<\/p>\n\n\n\nDOUG: Now she feels she has given me this. And so now we\u2019re in a challenge. And then also, that\u2019s when my dad leaves. So I am now the primary caregiver to my mother. And so this is an unbelievable disaster, you know, and\u2014and an unbelievable strain. <\/p>\n\n\n\n
And this is where our story really turns on the jets. Because at this low point in his life, a voice deep inside of him announced: \u201cWell, Doug, if the medical establishment can\u2019t figure out what\u2019s wrong with you, you\u2019ll have to do that yourself.\u201d As he says in his talk:<\/p>\n\n\n\n
Doug: So even though I was bed bound 22 hours a day and could walk only 50 feet, I decided to take control. I would partner with the doctors, sure, but where answers eluded us, I would take the lead, and I would tackle my problem like a scientist. <\/p>\n\n\n\n
He figured that the first step would be reading medical books and articles. He started with an endocrinology textbook he\u2019d borrowed from one of his mom\u2019s doctors.<\/p>\n\n\n\n
DOUG: And so I sat down and\u2014and I read a 2000-page endocrinology text.<\/p>\n\n\n\n
Now, it\u2019s one thing to read a heavy medical book when you\u2019re sitting at your desk. But Doug Lindsay couldn\u2019t sit. He had to read lying down. <\/p>\n\n\n\n
So imagine that your head is on the pillow; you\u2019re lying on your right side. The book is on the bed. You\u2019ve opened it so that you can read the left-hand page. <\/p>\n\n\n\n
DOUG: And you read down to the bottom of the page, and now you realize the other page is facing the ceiling. <\/p>\n\n\n\n
How do you read a page that\u2019s flat on the bed, when your head is also flat on the bed?<\/p>\n\n\n\n
His solution was to tip the book away from him on its spine, flopping it 90 degrees, so that he was now looking at the back cover. Then he\u2019d spin the book around on the bed. Now he\u2019s looking at what was the right-hand page\u2014but now it\u2019s upside down.<\/p>\n\n\n\n
DOUG: So I learned about fifth grade that I could read upside down. Because it was easier than me rolling my body to the other side, which is what you would have to do.<\/p>\n\n\n\n
I read one page right side up, flip the book, and read the next page upside down. And I\u2019d use the highlighter and\u2014you know, draw when I could from a laying position. And so I\u2019m reading these books\u2026 <\/p>\n\n\n\n
Then he read a pharmacology textbook. Then a physiology textbook. <\/p>\n\n\n\n
POGUE: But what percent of this material are you understanding? <\/p>\n\n\n\n
DOUG: Okay, by junior year, I had taken comparative anatomy, a year of organic chemistry, a year of biochemistry, genetics, cell molecular biology. <\/p>\n\n\n\n
I could understand how the chess pieces moved. And since medical journals are written for mainly physicians, I started with the textbooks. And textbooks are designed to teach, so I could wade through those books. <\/p>\n\n\n\n
So I start to piece together, from a few sentences in each of these books\u2014my conclusion was that I had more than a thyroid problem. <\/p>\n\n\n\n
It was more likely, he thought, that he had some rare disease that was mimicking <\/em>a thyroid problem.<\/p>\n\n\n\nDOUG: And I was reading this endocrinology text, and it said that \/ basically, too much adrenaline or too little looks like too much thyroid or too little thyroid in the symptoms it creates. <\/p>\n\n\n\n
Wait\u2014adrenaline? That\u2019s a totally different chemical, squirted out by a totally different organ. Your adrenal glands are these lumps that lie on top of your kidneys. Adrenaline is the fight-or-flight hormone, the one that gives you a burst of speed or strength when, you know, you\u2019re about to hit a deer, or you\u2019re humiliated in front of people, or you\u2019re in ninth grade and someone really cute smiles at you. <\/p>\n\n\n\n
So: Was his problem thyroid hormones? Or adrenal-gland hormones?<\/p>\n\n\n\n
DOUG: And so I\u2019m piecing that\u2014that these two systems have a very complicated relationship in controlling energy usage, metabolism, heart rate, blood pressure, digestion and\u2014and such. I\u2019m sitting there and I theorize there\u2019s likely a class of disorders that involve chronic dysfunction of the autonomic nervous system. <\/p>\n\n\n\n
I honestly don\u2019t know why they call it the autonomic nervous system. What it is <\/em>is the automatic <\/em>nervous system. It\u2019s the network of nerves that controls involuntary stuff, stuff you don\u2019t have to think about, like your heart rate, breathing, digestion\u2014and the release of adrenaline. <\/p>\n\n\n\nSo why not call it the automatic <\/em>nervous system? Why autonomic? <\/em>Either someone was being pretentious way back when, or they made a typo. <\/p>\n\n\n\nAnyway. The above-mentioned automatic nervous system has two parts, unhelpfully known as the sympathetic <\/em>nervous system and the parasympathetic <\/em>one. The sympathetic one floods you with adrenaline in times of danger, and the parasympathetic one calms you back down once the danger has passed. But none of that will be on the test.<\/p>\n\n\n\nANNNNNYway. Now Doug knew that there was something screwy with his sympathetic nervous system. Mostly with his adrenaline.<\/p>\n\n\n\n
DOUG: And I go to the doctors and I say, \u201cI think that there\u2019s a class of disorders like this, and I likely have one.\u201d And they said, \u201cthe problems like you described don\u2019t exist.\u201d And I said\u2014 <\/p>\n\n\n\n
POGUE: Did somebody ever say that? Did somebody ever\u2014 <\/p>\n\n\n\n
DOUG: Yeah. And I\u2014 <\/p>\n\n\n\n
POGUE: Those words. <\/p>\n\n\n\n
DOUG: I said, \u201cbut they could!\u201d<\/p>\n\n\n\n
So, doctors practice from experience. So the idea that a patient has theorized the class of disorders that they don\u2019t routinely encounter, that sounds absurd. But I was viewing it like a scientist. The idea that there was a complex system in the body and nothing could go wrong with it. To me, that<\/em> sounded absurd. <\/p>\n\n\n\nPOGUE: Totally! <\/p>\n\n\n\n
DOUG: So that was the stalemate for nine months. I sat at home until I finally got a computer with Internet access, and within a month I found a nonprofit devoted to the kinds of problems I\u2019d theorized existed and were told did not. <\/p>\n\n\n\n
He started with the website of NORD, the National Organization for Rare Disorders, which includes a list of all these nonprofits dedicated to various rare diseases.<\/p>\n\n\n\n
DOUG: And I was looking for \u201csympathetic nervous system,\u201d terms that would relate to what I was talking about. I found one and I called the founder. And all of a sudden we\u2019re having a conversation about diseases that I was told didn\u2019t exist. <\/p>\n\n\n\n
From this woman, he gained a key skill: Speaking the lingo.<\/p>\n\n\n\n
DOUG:<\/em> <\/em>And so now I am not having to use my words. I have the lexicon in the field. I was describing it as a chronic sympathetic nervous system problem, and they were using the word, dysautonomia, dysregulation of the autonomic nervous system. <\/p>\n\n\n\nDysautonomia. Sounds like a magic word in Harry Potter. It almost sounds pretty, like the name of a princess in a fairy tale. But it means a breakdown in the sympathetic nervous system. And it was affecting Doug, his mom, and his aunt.<\/p>\n\n\n\n
Almost two years had passed since he dropped out of school. <\/p>\n\n\n\n
DOUG:<\/em> <\/em>Now I know that it exists, and I know what I\u2019m looking for. So I\u2019m reading all these articles, and I see that there\u2019s a call for abstracts for the American Autonomic Society\u2019s annual meeting. All of the world\u2019s researchers who care about autonomic nervous system problems will be there. And I know that there\u2019s no other front door, and this is as close as I\u2019m going to get.<\/p>\n\n\n\nYes, that\u2019s right. This untrained, college dropout hoped to make a presentation at a national medical conference. <\/p>\n\n\n\n
I don\u2019t know, man. I like Doug, and I admire his relentlessness and his pluck. But as he told me the story, this seemed a little crazy. <\/p>\n\n\n\n
But it was his last, best chance at getting help.<\/p>\n\n\n\n
DOUG: Even if I\u2019m fooling myself, this is the best I can do for a once in a lifetime chance of a college dropout to present to a world gathering of the scientists and physicians who could help me.<\/p>\n\n\n\n
He vowed to pull out every stop, make every effort, consider every angle, to get accepted to the conference. Beginning with figuring out exactly how to write his proposal.<\/p>\n\n\n\n
DOUG: So I am now embarking on learning to write in a way that is so compelling and readable that people keep reading. I find out that that Time, Newsweek, Christian Science Monitor averaged 17 words, a sentence. And 50% are subject-verb. And so the abstract I wrote is quite well written for 300 words, you know\u2014I mean, it\u2019s\u2014it is crafted. <\/p>\n\n\n\n
But the hardest part was not writing the prose. It was confronting an audience he despised.<\/p>\n\n\n\n
DOUG: And now I have another problem, which is, I\u2019ve watched doctors fail my mom my whole life. And I hate them. <\/p>\n\n\n\n
And so a friend\u2014he basically said, you know, man, you\u2019ve got this bad attitude. It\u2019s like a victim mentality. <\/p>\n\n\n\n
I had to change what I thought about me, to change what I thought about them. And since I was going to be face to face with them and I needed their help and I don\u2019t have a poker face, I needed to do that. <\/p>\n\n\n\n
Did Doug Lindsay\u2019s out-of-the-blue abstract get accepted? Did he get to present at the conference? Did it lead to important connections that would one day save his life?<\/p>\n\n\n\n
I\u2019ll tell you\u2014after the break.<\/p>\n\n\n\n
Second ad break<\/sub><\/strong><\/h2>\n\n\n\nThanks for letting me leave you in suspense about whether or not Doug Lindsay\u2019s long-shot abstract got accepted for the 2002 meeting of the American Autonomic Society.<\/p>\n\n\n\n
It was. To this day, he\u2019s not quite sure why. Might be that the guy who reviewed the proposals assumed that he was a doctor.<\/p>\n\n\n\n
DOUG: And it\u2019s in there as D.M. Lindsey\u2014and I lived in University City. There\u2019s a chance he just\u2014there\u2019s a chance that D.M. Lindsey from University City\u2014he thought I was a doctor. I don\u2019t know. So I don\u2019t understand how a 24-year-old college dropout got accepted to present at this medical conference. But when they said yes, I said, I\u2019m coming!<\/p>\n\n\n\n
He had won a slot at the poster session. He\u2019d have three minutes to speak to a group of doctors clustered around a 4-by-5-foot poster that Doug designed to outline his theory. <\/p>\n\n\n\n
DOUG: So I called the local store and they donated $1,000 suit for me to wear in my wheelchair. And I reached out to an artist who drew kidneys and hearts. And I used my old newspaper layout skills to design my presentation. And it was\u2014it was easily among the best there, because nobody else\u2019s life was riding on theirs. <\/p>\n\n\n\n
With the help of some friends, he raised enough money to buy a row of seats on the plane so he could lie down in flight.<\/p>\n\n\n\n
POGUE: Oh, wow. And so how did it go? Did it lead to anything useful? <\/p>\n\n\n\n
DOUG: Like, I spoke well\u2014and so I finish. And so they went: \u201cWe have to go to the next poster.\u201d And so I felt dejected because, you know, there were no claps. There was no like, you know, \u201ccome with me, young man\u201d\u2014you know? <\/p>\n\n\n\n
In his talk, he describes that day like this:<\/p>\n\n\n\n
DOUG: The poster before mine was from the Mayo Clinic, and the poster after mine was from Japan. And in the middle was me, a 24-year-old patient in a reclining wheelchair, outlining a proposed treatment for my own disorder. <\/p>\n\n\n\n
Now, the talk went well, but I hadn\u2019t gone there just to talk. I\u2019d gone to find a collaborator, somebody to work with, and on that, I came home empty. <\/p>\n\n\n\n
He did meet a few doctors at that conference; but by the time he returned home, it was back to networking. Writing emails. Wheeling himself into specialists\u2019 offices to make his case. <\/p>\n\n\n\n
DOUG: I\u2019m there at home and I\u2019m struggling. Because I\u2019m reaching out to lots of scientists and I\u2019m having lots of conversations. But I\u2019m also getting lots of nos, getting blown off by doctors, by PhDs, by all sorts of people. life. <\/p>\n\n\n\n
At one point, he learned about a surgeon at Washington University in St. Louis named Michael Brunt, a general and endocrine surgeon with particular expertise in adrenal surgery. This is Dr. Brunt.<\/p>\n\n\n\n
Speaker 2: He comes to the clinic and he has very limited mobility. He is mostly supine, lying down because he has this autonomic dysfunction. And he had done a lot of research about this and was convinced his adrenal glands were a part of the problem. <\/p>\n\n\n\n
And despite my background experience in endocrine surgery, this was not something I had heard of. <\/p>\n\n\n\n
And, and to be honest, I was a little bit skeptical about whether this is something that would require surgical treatment. I was not I was not inclined to carry out surgery on him at that time. <\/p>\n\n\n\n
Honestly, it\u2019s not that Brunt was being a jerk, or not taking Lindsay seriously, or being smug. He was just being a good doctor. You know\u2014first, do no harm.<\/p>\n\n\n\n
BRUNT: I think in medicine, and particularly in surgery, we tend to be a little bit conservative in and in treating patients oftentimes, and appropriately so. And so you want to be really careful about doing something as aggressive as taking out both of someone\u2019s adrenal glands, which means tha t they are going to be dependent on replacement hormone therapy the rest of their lives. And that\u2019s not something we take lightly, because there\u2019s risks of death.<\/p>\n\n\n\n
But Doug Lindsay being Doug Lindsay, he did not give up. He returned to Dr. Brunt\u2019s office the following year. And then the next year. And the next year. And the next year.<\/p>\n\n\n\n
DOUG: So for four years, I rolled into his office in a wheelchair and said, \u201cI think if we do this surgery, it will help me.\u201d He was always helpful, but he didn\u2019t do the surgery. But we kept the relationship alive. <\/p>\n\n\n\n
In the meantime, of course, Doug continued to correspond with any doctor who might take an interest in his case. And sure enough: 18 months after his presentation at the conference, Doug reconnected with Cecil Coghlan, a professor and clinician at the University of Alabama, Birmingham, who had chatted briefly with Doug after his presentation at that medical conference. Coghlan had a particular interest in autonomic dysfunction. In fact, he ran an Autonomic Nervous System Lab. <\/p>\n\n\n\n
DOUG: He ended up being my collaborator after five years of being sick. So now I have somebody who is listening to me and is able to execute. And he\u2019s\u2014he\u2019s a genius. He just had this warmth about\u2014and joy about life, even though we were, you know, we were dealing with heavy stuff. <\/p>\n\n\n\n
For the first time, Doug found himself in the hands of a doctor who was studying the right things.<\/p>\n\n\n\n
DOUG: So I go to the University of Alabama and after five years, Dr. Coghlan runs an extensive autonomic battery on me of tests, and I come back with a severe dysautonomia. I had elevated adrenaline levels beyond what they should have been. <\/p>\n\n\n\n
POGUE: So the theory is, remove your adrenal gland? <\/p>\n\n\n\n
DOUG: So the adrenal gland has two parts, like a hardboiled egg. The outside makes steroid hormones, cortisol, all these things you need to live. <\/p>\n\n\n\n
That outer shell is called the cortex. There was nothing wrong with Doug\u2019s cortex. It was there, producing important hormones that he needed to live. But\u2026<\/p>\n\n\n\n
DOUG: The inside is a different kind of tissue. It makes adrenaline. And we\u2019re saying if\u2014that the inside of the adrenal gland is releasing adrenaline in a misbehaving manner, as if it\u2019s a tumor. So if we take it out, maybe I\u2019ll get better.<\/p>\n\n\n\n
And that\u2019s where I say, \u201cif there\u2019s no good surgery that exists, I\u2019ll invent one.\u201d<\/p>\n\n\n\n
POGUE: You are not normal!<\/p>\n\n\n\n
DOUG: No! So. But\u2014my definition of what\u2019s possible is different. <\/p>\n\n\n\n
But first of all\u2014was it really true that nobody in the history of history had ever done this exact surgery, removing the center of an adrenal gland? Once more, Doug hit the books.<\/p>\n\n\n\n
DOUG: I\u2019m scouring the globe, and I find that this surgery that I need and that everyone thinks is impossible had been done in cats at Harvard in 1926. \/this guy named Walter Cannon, who\u2019s so important. He has a mountain on the East Coast named after him, and he\u2019s this legend at Harvard. <\/p>\n\n\n\n
Side note: he\u2019s right. I consulted the oracle\u2014Wikipedia. Walter Cannon lived from 1871 to 1945, and he really was a medical legend. He was the first person ever to use X-ray to study how swallowing and digestion work. He discovered how adrenaline works.<\/p>\n\n\n\n
And, apparently, he invented the beer bong.<\/p>\n\n\n\n
POGUE: Wait what? <\/p>\n\n\n\n
POGUE: So Walter Cannon wanted to understand the role of how\u2014how\u2014how changeable body temperature was. So he ended up trying to feed ice water to deer to see if it would change their core temperature. They had to put a tube down the deer\u2019s throat. And then he tried it on humans. And he\u2019s like, they hate having a tube down their throat. But if they just put the funnel and the tube in their mouth and you just ask them, they can drink cold water really fast. And so Walter Cannon accidentally invented the beer bong. <\/p>\n\n\n\n
OK. Well, Wikipedia doesn\u2019t say anything about Walter Cannon and the beer bong. But it does say this, which I love: \u201cDr. Cannon was once offered a job at the Mayo Clinic for twice his Harvard salary. Cannon declined, saying, \u2018I don\u2019t need twice as much money. All I need is fifty cents for a haircut once a month, and fifty cents a day to get lunch.\u201d<\/p>\n\n\n\n
Anyway. Doug now realizes that the adrenal-gland-middle-removal surgery has indeed been performed\u2014on cats, 82 years earlier. And as he continues to rummage through these old scientific papers, he also learns that\u2014<\/p>\n\n\n\n
DOUG: It had been done in dogs. And a librarian at Oregon Health Sciences University, she\u2019s the one who tracks down the paper from 1923 where it had first been done in Argentina. <\/p>\n\n\n\n
And so we get this article and it explains how to do the surgery. And he says, trying to take the middle out of the adrenal gland and leave the outside, is like trying to cut the peanut butter out of a peanut butter sandwich and leave the bread. <\/p>\n\n\n\n
He said he sliced into the adrenal gland with a sharp Gillette blade and opened it like a book. Then he scraped out the middle with a small, hard spoon. Then he sewed it back up. And so it was a concept of scraping rather than cutting that enabled a\u2014a shift in me at least that this\u2014these two tissues could be divided safely, because the dogs lived. Two of the dogs escaped 24 hours after surgery in apparent good health! <\/p>\n\n\n\n
So. Dogs and cats\u2014but as far as he could determine, this exact surgery had never been done on a person. <\/p>\n\n\n\n
By this point, Dr. Coghlan had retired. But if we\u2019ve learned anything so far, it\u2019s that Doug Lindsay does not give up. He persuaded Coghlan to champion his cause among his colleagues at the University of Alabama. <\/p>\n\n\n\n
DOUG: And so a nonprofit named Wings of Hope put me on a free medical flight. I lay on a stretcher in a small private plane\u2014and they flew me from Saint Louis to Birmingham and back so I could get the surgery, because I was too sick to travel any other way at this point. <\/p>\n\n\n\n
POGUE: How many years had it been now, that you were sick? <\/p>\n\n\n\n
DOUG: 11 years. <\/p>\n\n\n\n
Lindsay has two adrenal glands, of course; so do you. But the surgeons had decided that the safest approach would be to operate on only one <\/em>of them. This was, after all, experimental. If it turned out to be dangerous, Lindsay would still have one adrenal gland left.<\/p>\n\n\n\nAnd so, on September 17, 2010, Coghlan\u2019s long-time colleague Dr. Martin Heslin scraped out the center of Doug Lindsay\u2019s left adrenal gland, using a daVinci surgical robot for its precision in tight spaces.<\/p>\n\n\n\n
The surgery wasn\u2019t a flawless triumph. During the procedure, what was left of Doug\u2019s adrenal gland, the now-empty cortex, fell apart. <\/p>\n\n\n\n
DOUG: We ended up\u2014like we ended with two parts. We ended up pulling the whole thing. But because the other gland was in place, I didn\u2019t have any negative repercussions from that. <\/p>\n\n\n\n
So yes, Doug survived the surgery. And now only one of his adrenal glands was pumping out absurd amounts of adrenaline instead of two. But upon arriving home, he still didn\u2019t know whether any of this had accomplished <\/em>anything. He didn\u2019t feel any better\u2014at least not right away.<\/p>\n\n\n\nDOUG: But about three weeks after the surgery, now I can sit for about 3 hours, two or 3 hours instead of just the length of a meal. And\u2014 <\/p>\n\n\n\n
POGUE: Wow. <\/p>\n\n\n\n
DOUG: And so shortly after that, I can walk two or 300 feet. And I\u2019m walking further every day. <\/p>\n\n\n\n
And I thought, if I could walk to the corner and back and corner and back, then I could go all the way around the block. If I could go all the way around the block\u2026and then I would start building that way. And so I went from being able to walk 50 feet in September to being able to walk over four miles by the end of January. <\/p>\n\n\n\n
POGUE: So were you like, \u201chooray, the surgery is a success. I\u2019m fixed?\u201d<\/p>\n\n\n\n
DOUG: I mean, this capacity to be active for\u2014you know\u201490 minutes or something, didn\u2019t translate fully into being able to have the stamina to live a normal life. <\/p>\n\n\n\n
Doug got better and stronger as the months went by\u2014but only up to a point. Then his recovery plateaued. He\u2019d gotten as much healthier as he was going to get. And so he began to think: What about my other <\/em>adrenal gland? That <\/em>one is still flooding me with adrenaline. Maybe we hollow that one out, too?<\/p>\n\n\n\nThe surgeons in Alabama were reluctant to attempt the surgery again. But remember Dr. Brunt in Saint Louis? The one who said, <\/p>\n\n\n\n
BRUNT: I was not inclined to carry out surgery on him at that time. <\/p>\n\n\n\n
The guy Doug had visited every single year? Well, Lindsay\u2019s fifth annual visit was after <\/em>the first surgery. This time, Dr. Brunt began to reconsider.<\/p>\n\n\n\nBRUNT: We had a lengthy conversation. I thought about it given the fact that he had gotten somewhat better, but was still very limited. Then that gave me the confidence to say, \u201cI think this is reasonable.\u201d<\/p>\n\n\n\n
DOUG: And he said to me, \u201cif you\u2019re still struggling a year after the surgery, I would find that compelling.\u201d So I circled on the calendar a year to the surgery, knowing that I wouldn\u2019t talk to any of the surgeons about another surgery until it had been a year. <\/p>\n\n\n\n
And so it was that, on DougLindsay\u2019s sixth annual visit, Dr. Brunt had finally heard, seen, and waited enough.<\/p>\n\n\n\n
Doug: \u2026And he did the second surgery. <\/p>\n\n\n\n
One fine day in June 2012, Brunt delicately scraped out the medulla, the middle of the gland that was producing too much adrenaline. He left behind the cortex, the outside portion, that produced other stuff Doug needed to live.<\/p>\n\n\n\n
And he did this procedure laparoscopically. It\u2019s what they call keyhole surgery. That\u2019s where you don\u2019t cut the patient open; instead, you make a tiny <\/em>incision, and you thread a thin rod or cable through. At the far end, it has a camera, a light, and whatever surgical tools you need.<\/p>\n\n\n\nBRUNT: And so we did this procedure laparoscopically or minimally invasive and preserved a portion of his cortex. He had a completely uneventful recovery from the surgery. And\u2014 and what was most amazing to me is that he became functional again! He\u2019s not perfect, but he was able to walk and to get out and about. <\/p>\n\n\n\n
Doug: It was a success. My adrenal gland lived. We took out the stuff we wanted.<\/p>\n\n\n\n
Now, nature gave Doug Lindsay that gland for a reason\u2014to produce adrenaline and stuff like that; so without it, he\u2019d have to start taking hormone-replacement drugs.<\/p>\n\n\n\n
DOUG: I describe it like blowing up the dam, right? The surgery blew up the dam. And now here comes the water. And the changes in my physiology required all of these medication changes to rein in what had changed. <\/p>\n\n\n\n
POGUE: So this may not be your favorite question, but\u2014 can you blame the doctors who for years would not take you seriously because they\u2019d never seen it before? <\/p>\n\n\n\n
DOUG: Yeah. So, there\u2019s 7000 identified rare diseases. Those are just the ones identified. So you can\u2019t blame doctors for not knowing. The challenge is when they are hostile to the patient who has brought their curiosity to bear and found something that is outside the working knowledge of the physician. So I learned to partner with doctors and\u2014and learned to to fit in and help fill the gaps where they would get stuck. <\/p>\n\n\n\n
All told, over his 14-year odyssey, Doug Lindsay worked with 35 doctors and professors at 28 universities and hospitals. That approach to partnership is exactly what impressed Dr. Brunt.<\/p>\n\n\n\n
Brunt: I think it\u2019s just a lesson in persistence\u2014but doing it in a thoughtful way, and really understanding the medical and scientific literature on a problem to come up with his own solution to it. <\/p>\n\n\n\n
By this time, Doug\u2019s mom was too sick to benefit from the surgery he\u2019d developed. But as part of this journey, he\u2019d also developed new uses for some existing medicines. For example, he\u2019d tried repurposing an old beta blocker drug. See, a beta blocker is a treatment for high blood pressure. And it works by convincing your heart to beat slower and softer. And it does that by blocking the effects of a little hormone called\u2026that\u2019s right. Adrenaline!<\/p>\n\n\n\n
That same beta blocker helped extend his mom\u2019s life eight years beyond the doctors\u2019 predictions.<\/p>\n\n\n\n
POGUE: So in a way, you did\u2014 You did help her. <\/p>\n\n\n\n
DOUG: And that same use\u2014my aunt is now healthier in her seventies than she was in her thirties because of that same new use for an old drug. She ties her own shoes. She drives a car. She can sit on an exercise bike. And so she\u2019s living a life that she never believed was possible. <\/p>\n\n\n\n
POGUE: I mean, honestly, it wouldn\u2019t have happened if you weren\u2019t good with words, good with people. And freaking relentless. <\/p>\n\n\n\n
DOUG: And\u2014and very lucky. You can\u2019t control when someone picks up the phone. You can\u2019t control when they answer your email or not or whether they\u2019re on vacation or not. And\u2014and so, you know, luck is a part of it and\u2014and faith as well. <\/p>\n\n\n\n
POGUE: That\u2019s a little surprising, because you would be held up in some philosophies as the proof that there isn\u2019t a kind God. <\/p>\n\n\n\n
DOUG: Yeah. You know, there\u2019s a hardness to life. I mean, there is love, there is kindness, there is good. And, you know, there\u2019s\u2014there\u2019s such a beauty to the world when you see these things that you say, \u201cI think there\u2019s a god.\u201d<\/p>\n\n\n\n
I went to Jesuit schools. I learned science from people who had faith. I don\u2019t see them in opposition. And when I see the elegance of the universe, you know, I see a watchmaker behind the watch. And that fits very neatly with the ethos of the journalist who\u2019s searching for truth, and the ethos of the scientist who says, \u201cyou run the experiment.\u201d And when you lay those things together, you develop something really powerful that could sustain me when things were very, very hard. <\/p>\n\n\n\n
Today, Doug tries to use his superpowers\u2014polite perseverance, and fresh approaches in an entrenched medical system\u2014to help other people who might be in his position. <\/p>\n\n\n\n
DOUG: What I\u2019m doing now is I work as a personal medical consultant. For a small number of people with complex conditions who find themselves stuck in the medical system, I basically join their family for a year and see if we can find something that was missed.<\/p>\n\n\n\n
POGUE: Well, I\u2019ll tell you, if I had an ailment, I would want somebody with your research doggedness and networking skills on my side. <\/p>\n\n\n\n
DOUG: Thank you. I don\u2019t like dealing with sickness and illness, but when I run across someone who\u2019s struggling and there\u2019s a chance that what I\u2019ve been through can help, I like to try.<\/p>\n\n\n\n
That\u2019s the part that impresses his surgeon, Dr. Brunt, the most.<\/p>\n\n\n\n
Brunt: He\u2019s really a remarkable person. And I\u2019m so happy that he\u2019s got his life back, and is out there, and able to not just engage, but to also try to do something good for other people. He\u2019s been an advocate for this all over the country.<\/p>\n\n\n\n
Certainly I learned a lot from it as a physician and surgeon from that experience. And I think it\u2019s good for us to keep an open mind and not be so rigid about, you know, certain problems that patients have sometimes. And to really listen to them and listen to their story about what their problem is. <\/p>\n\n\n\n
And I would say this has been my 30-plus year career as a surgeon, this is one of the most rewarding and interesting and educational patient-care experiences that I\u2019ve ever been a part of. <\/p>\n\n\n\n
So, OK. We get that Doug Lindsay was relentless despite being flat on his back, and tireless while being completely exhausted. And yeah, his story has a happy ending\u2014but what gets me is that there was no way for him to have known <\/em>that there would be a happy ending. <\/p>\n\n\n\nPOGUE: But in 2004, you couldn\u2019t see around the corner. <\/p>\n\n\n\n
DOUG: No. No.<\/p>\n\n\n\n
POGUE: Did it ever strike you that you\u2019d become this relentless pitbull of a researcher\u2014 and it might be for nothing? <\/p>\n\n\n\n
DOUG: Well\u2014so. As a doctor, there\u2019s not necessarily a right or wrong time to give up. And as a patient, there isn\u2019t either. But as a scientist, you run the experiment. And so it was my job to persevere until we could run the experiment. And that\u2019s how I was somebody who wouldn\u2019t quit. <\/p>\n\n\n\n
In the modern West, we have Superman and Spiderman. One hero\u2014He stops the train. This one saves the day. But I started reading, and I read things that had passed the test of time. And to the ancient Greeks\u2014if you read The Iliad<\/em>, there\u2019s room for people to be heroes, even if they\u2019re flawed. And there\u2019s room for you to be special, even if you\u2019re next to Achilles, who\u2019s the world\u2019s greatest warrior, because there\u2019s more to cover in a war than one person.<\/p>\n\n\n\nI was able to see that if this was a quest, that I could be a flawed hero and just keep trying. Because to the Greeks, the Trojan hero Hector, who died, was a hero. He lost the war and<\/em> he died. What was heroic was his effort. And so I was able to shift heroism from the person who saves the day, to the person who strives and toils and endeavors heroically. So those two pieces fit together to power something. <\/p>\n\n\n\nPOGUE: So how are you now? <\/p>\n\n\n\n
DOUG: I\u2019m pretty good. I\u2019m held together by duct tape. Like\u2014you know, I take eight meds a day. And yet I can drive a car, I can go to a meeting, I can\u2014you know\u2014go fly fishing. I have health challenges that are real and continuing, but I also have a chance to build a life. And that\u2019s what I\u2019m working on.<\/p>\n
https:\/\/unsung.davidpogue.com\/wp-content\/uploads\/2023\/10\/unsungscience-20230609.mp3<\/a><\/audio><\/div>Podcast: Play in new window<\/a> | Download<\/a><\/p>","protected":false},"excerpt":{"rendered":"In his senior year of college, a monstrous ailment fell upon Doug Lindsay. His skin felt flayed. His heart raced. The room spun. He was so weak, he couldn\u2019t sit up in bed, let alone walk. Worst of all, doctors had no idea what was wrong with him.More <\/svg><\/a><\/span><\/p>\n\n
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