0:02

Ordinarily, there's

0:05

very little overlap between unsung

0:07

science topics and the stories in

0:10

People Magazine. I mean, can

0:12

you imagine? This week on Unsung

0:14

Science, Taylor Swift looks back

0:16

on her life and loves.

0:18

But there was this one article in 2021 that I could not get

0:20

out of my head.

0:23

The story of a man with a horrific disease

0:26

that was so rare, the medical

0:28

community had nothing to offer him. It's

0:30

exceedingly rare. I was able to find 32 cases

0:33

globally ever. Like we said, wow,

0:36

you know, you got 46 presidents. You're

0:39

more likely to be elected president than to be diagnosed

0:41

with one of these problems. So what do you

0:43

do when you're the only one who knows anything

0:45

about your illness? Well, Doug

0:47

Lindsay spent 14 years

0:48

turning himself into a scientist

0:51

from his bed. In the end, in

0:53

the face of almost universal skepticism

0:56

from doctors,

0:57

he invented his own surgery,

1:00

convinced that it would cure him. This

1:02

story is incredible. I'm

1:04

David Pogue, and this is Unsung

1:06

Science.

1:11

Hey, Prime members, you can listen to Unsung

1:14

Science ad-free on Amazon Music.

1:16

Download the app today. The Angie's

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That's A-N-G-I, or download the app today.

1:50

Season 2, Episode 12, How

1:52

Doug Lindsay Invented His Own Surgery.

1:55

So my

1:57

name is Doug Lindsay. I'm a keynote

1:59

speaker. and a personal medical consultant.

2:02

Probably not what you thought you would be doing as a little

2:04

boy growing up. Yeah, I loved science

2:06

and animals, but I certainly, I didn't

2:09

imagine that this would be my path. The

2:11

path began in Missouri, where he grew

2:13

up. In high school, he was an athlete.

2:16

He was on the track and field team. He

2:18

thought maybe he'd become a biochemist someday,

2:21

or a writer for The Simpsons,

2:23

but he never made it that far. One

2:26

day in 1999, something went seriously wrong with his body.

2:32

I took a job doing

2:34

summer biochemistry research

2:37

at the University of Kansas after my

2:39

junior year in college. And

2:42

soon after arriving, you know, a week or two,

2:45

I end up

2:46

with mono. That would be

2:49

mononucleosis, the virus that gives

2:51

you fever, sore throat, and swollen

2:53

lymph glands. It's spread by

2:55

saliva, and it's very common

2:57

in teenagers, thus its nickname,

3:00

the kissing disease. I spent the summer

3:02

resting and recuperating, hoping to go back

3:04

to college and start my senior year. Spoiler

3:07

alert, he did not have mono.

3:10

On his first day of senior year, something

3:13

hit him that made that very clear. I

3:16

came home from classes and

3:18

laid on the table with the room spinning

3:21

and my heart pounding, and about two hours later,

3:23

I was able to crawl up into bed. And

3:25

I had no idea what was going

3:27

on, but what I knew was it wasn't

3:29

just mono. What are the symptoms

3:32

at that stage? I'm sweating through several

3:34

undershirts a night. You know, my heart is pounding

3:36

if I'm active, and I'm exhausted all

3:38

the time. It felt like someone

3:41

had run a cheese grater over my muscles. You

3:43

can put a piece of loose-leaf paper on my

3:45

chest and watch it

3:46

flutter because my heart is beating that

3:48

hard in my chest. You know,

3:50

and I was so tired, and I'm laying on the floor

3:53

breathing heavily as my heart pounds, and

3:55

it's like the floor isn't low enough.

3:58

I'm 6'1", 21 years old. laying

4:00

on the floor in the living room, laid out

4:02

like a chalk outline in the middle of the living room.

4:05

By my 22nd birthday, I had to rest when

4:09

I would change a light bulb because I

4:11

could reach up and take the bulb out, but

4:13

I couldn't keep my limbs away from my body

4:15

for long enough to put the new bulb in.

4:18

And a 22-year-old man,

4:20

that's not how it usually goes. Doug's

4:23

first thought was probably your first thought,

4:25

see a doctor. As

4:28

he says in his TEDx talk, my

4:30

life was a disaster. So

4:32

I turned to the doctors for help. I saw

4:34

a series of specialists and they

4:36

couldn't tell me what was wrong or what

4:38

would help. The best guess they had

4:41

was that something was wrong with Doug's thyroid.

4:43

The thyroid is a tiny

4:46

organ in your neck shaped like a butterfly.

4:49

Your thyroid makes the hormones that control your

4:51

energy

4:52

and therefore your breathing, heart rate,

4:54

weight, digestion, and moods. So

4:57

they put Doug on thyroid medicine. It

5:00

didn't seem to do much for him or for

5:02

his mom. Oh, that's

5:05

right, his mom. I somehow failed

5:07

to mention a tidbit that's fairly important

5:09

to this story. Doug Lindsay knew

5:11

two other people with this illness,

5:14

his mother and her sister,

5:17

his aunt. And so growing up, I had

5:20

a sick mom who couldn't

5:22

open the front door of our house and who I couldn't

5:24

give a hug to. It was a very challenging

5:27

time because no

5:29

one could explain what was wrong with her, but she

5:31

was terribly ill.

5:33

A severe illness doesn't affect only you,

5:35

of course. It complicates the lives of

5:37

everyone around you. And Doug's

5:39

family dynamic got very

5:42

complicated.

5:43

Now she feels she has given me this.

5:46

And so now we're in

5:48

a challenge. And then also that's

5:50

when my dad leaves. So I

5:52

am now the primary caregiver to my

5:54

mother. And so this

5:57

is an unbelievable disaster.

5:59

you know, in an unbelievable strain.

6:02

And this is where our story really

6:04

turns on the jets. Because

6:06

at this low point in his life, a

6:09

voice deep inside of him announced,

6:11

well Doug, if the medical establishment

6:13

can't figure out what's wrong with you, you'll

6:15

have to do that yourself.

6:18

As he says in his talk, So even though

6:20

I was bed bound 22 hours a day and

6:22

could walk only 50 feet, I

6:24

decided to take control.

6:27

I would partner with the doctor, sure, but

6:29

where answers eluded us, I would take

6:31

the lead. And I would

6:33

tackle my problem like a scientist.

6:36

He figured that the first step would be reading

6:39

medical books and articles. He started

6:41

with an endocrinology textbook he'd borrowed

6:43

from one of his mom's doctors.

6:45

And so I sat down and I read

6:47

a 2000 page endocrinology text. Now,

6:51

it's one thing to read a heavy medical book when

6:53

you're sitting at your desk. But

6:55

Doug Lindsay couldn't sit. He

6:57

had to read lying down. So

7:00

imagine that your head is on the pillow. You're

7:03

lying on your right side. The book

7:05

is on the bed. You've opened it so

7:08

that you can now read the left hand page.

7:10

And you read down the bottom of the page.

7:13

And now you realize the other page is facing the

7:15

ceiling.

7:16

How do you read a page that's flat

7:18

on the bed when your head is also

7:21

flat on the bed? His solution

7:23

was to tip the book away from him

7:25

on its spine, flopping it 90 degrees

7:29

so that now he was looking at the back cover.

7:31

Then he'd spin the book around

7:34

on the bed.

7:35

Now he's looking at what was the right hand

7:37

page.

7:38

But now it's upside down. So

7:41

I learned about fifth grade that I could read

7:43

upside down. And so because it was

7:46

easier than me rolling my body to the other

7:48

side, which is what you would have to do. I

7:50

read one page right side up, flip the book

7:52

and read the next page upside down. And I'd

7:54

use the highlighter and,

7:56

you know, draw when I could from a laying position.

7:59

And so I'm reading these.

7:59

books. Then he read a pharmacology

8:02

textbook. Then a physiology

8:04

textbook.

8:05

But what percent of this material are you

8:07

understanding? Okay, by junior year

8:09

I had taken comparative anatomy, a year

8:11

of organic chemistry, a year of biochemistry,

8:14

genetics, cell molecular biology.

8:17

I could understand how the chess pieces

8:19

moved, and since medical journals

8:21

are written for

8:22

mainly physicians, I started with

8:24

the textbooks, and textbooks are designed to teach.

8:27

So I could wade through those

8:29

books. So I start to piece

8:31

together from a few sentences in each

8:34

of these books. My conclusion was

8:36

that I had more than a thyroid problem. It

8:38

was more likely, he thought, that he had

8:41

some rare disease that was mimicking

8:44

a thyroid problem. And

8:45

I was reading this endocrinology

8:47

text and it said that

8:50

basically too much adrenaline

8:53

or too little looks like too

8:56

much thyroid or too little thyroid

8:58

in the symptoms it creates. Wait,

9:01

adrenaline? That's a totally

9:03

different chemical squirted out by

9:05

a totally different organ. Your

9:07

adrenal glands are these lumps

9:10

that sit on top of your kidneys. Adrenaline

9:13

is the fight-or-flight hormone, the

9:15

one that gives you a burst of speed or strength

9:17

when, you know, you're about to hit a deer

9:19

or you're humiliated in front of people

9:22

or you're in ninth grade and someone

9:24

really cute smiles at you.

9:26

So was his problem thyroid

9:28

hormones or adrenal gland

9:30

hormones?

9:31

And so I'm piecing

9:33

that these two systems have a very

9:36

complicated relationship in

9:38

controlling energy usage, metabolism,

9:40

heart rate, blood pressure, digestion,

9:42

and such. I'm sitting

9:45

there and I theorize there's likely

9:47

a class of disorders

9:49

that involve chronic dysfunction of the

9:52

autonomic nervous system.

9:54

I honestly don't know why they call it

9:56

the autonomic nervous system. What

9:58

it is is the automatic nervous

10:00

system. It's the network of nerves that

10:03

controls the involuntary stuff, stuff

10:05

you don't have to think about, like your heart

10:07

rate, breathing, digestion,

10:10

and the release of adrenaline. So

10:13

why not call it the automatic nervous

10:15

system? Why autonomic? Either

10:18

someone was being pretentious way back when,

10:20

or they made a typo.

10:22

Anyway, the above-mentioned automatic

10:25

nervous system has two parts, unhelpfully

10:28

known as the sympathetic nervous

10:30

system and the parasympathetic

10:32

one.

10:33

The sympathetic one floods you with adrenaline

10:35

in times of danger, and the parasympathetic

10:38

one calms you down once the danger

10:40

has passed, but none of that will be on the

10:42

test. Anyway,

10:44

now Doug knew that there was something screwy

10:47

with his sympathetic nervous system, mostly

10:50

with his adrenaline. And I go to the

10:52

doctors and I say, I think that there's

10:54

a class of disorders like this, and I likely

10:56

have one. And they said,

10:58

problems like you described don't exist.

11:01

And I said, Did somebody ever say that? Did

11:03

somebody ever? Yeah. And

11:06

I said, but they could.

11:08

So doctors practice from experience.

11:11

So the idea that a patient has theorized

11:13

the class of disorders that they don't routinely

11:16

encounter, that sounds absurd.

11:19

But I was viewing it like a scientist. The

11:21

idea that there was a complex system

11:24

in the body and nothing could go wrong with

11:26

it, to me, that sounded

11:28

absurd. Totally. So that

11:30

was the stalemate. For nine months, I

11:33

sat at home until I finally got a computer

11:35

with internet access. And within a month, I found

11:37

a nonprofit devoted to the kinds

11:39

of problems I'd theorized existed and were

11:41

told did not.

11:43

He started with the website of NORD,

11:46

the National Organization for Rare Disorders,

11:48

which includes a list of all these nonprofits

11:51

dedicated to various rare diseases.

11:54

And I was looking for sympathetic nervous system

11:56

terms that would relate to what I was talking

11:59

about.

11:59

And I found one, and I called

12:02

the founder, and all of a sudden we're

12:04

having a conversation about diseases that

12:06

I was told didn't exist. From this woman,

12:08

he gained a key skill,

12:10

speaking the lingo.

12:12

And so now I am not having

12:15

to use my words. I have the lexicon

12:17

in the field. I was describing it as a chronic

12:19

sympathetic nervous system problem, and

12:22

they were using the word dysautonomia,

12:24

dysregulation of the autonomic nervous

12:27

system. Dysautonomia sounds

12:29

like a magic word in Harry Potter.

12:31

Dysautonomia. It almost

12:33

sounds pretty like the name of a princess in

12:35

a fairy tale, but it means a

12:38

breakdown in the sympathetic nervous system,

12:40

and it was affecting Doug,

12:42

and his mom, and his aunt.

12:45

Almost two years had passed since he

12:47

dropped out of school. Now I know

12:49

that it exists, and I know what I'm looking

12:51

for. So I'm

12:54

reading all these articles, and I see

12:56

that there's a call for abstracts for

12:58

the American Autonomic Society's annual

13:01

meeting.

13:02

All of the world's researchers who care

13:05

about autonomic nervous system problems will

13:07

be there, and I know that there's no

13:09

other front door, and this is as close

13:11

as I'm going to get.

13:13

Yes, that's right. This untrained

13:15

college dropout hoped to make a presentation

13:18

at a national medical conference. I

13:21

don't know, man. I like Doug, and I

13:23

admire his relentlessness and his pluck, but

13:26

as he told me the story, this seemed

13:28

a little crazy, but

13:30

it was his last best chance

13:33

at getting help. Even if I'm fooling myself,

13:35

this is the best I can do for a once-in-a-lifetime

13:38

chance of a college dropout to present

13:40

to a world gathering of the scientists

13:43

and physicians who could help me.

13:44

He vowed to pull out every stop,

13:47

make every effort, consider every

13:49

angle

13:50

to get accepted to the conference, beginning

13:53

with figuring out exactly how to

13:55

write his proposal.

13:57

So I am now embarking on

13:59

learning. to write in a way that is so

14:01

compelling and readable that people

14:04

keep reading.

14:05

I find out that Time, Newsweek, Christian

14:07

Science Monitor average 17 words a sentence.

14:10

Wow. And 50% are subject verb.

14:12

And so the abstract I wrote is

14:15

quite well written for 300 words. You

14:17

know, I mean, it is crafted.

14:20

But the hardest part was not writing the

14:22

prose. It was confronting an

14:24

audience he despised. And

14:27

now I have another problem, which is I've watched

14:29

doctors fail my mom my whole life. And

14:34

I hate them. And

14:36

so a friend, he

14:38

basically said, you know, man, you've got this bad

14:41

attitude. It's like a victim mentality. Well,

14:43

I had to change what I thought about me

14:45

to change what I thought about them. And

14:48

since I was going to be face to face with them and

14:50

I needed their help and I don't have a poker face,

14:53

I needed to do that. Did

14:56

Doug Lindsay's out of the blue abstract

14:58

get accepted? Did he get to present

15:01

at the conference? Did it lead

15:03

to important connections that would one day save

15:05

his life? I'll tell you after

15:07

the break.

15:14

Whether you're running errands on your daily commute

15:16

or even at home, you can enjoy all your audio

15:18

entertainment in one app, the Audible app.

15:20

As an Audible member, you can choose one title a month

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15:34

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15:43

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15:51

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15:55

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15:59

for 30 days. Hi, I'm

16:02

Lindsey Graham, the host of Wondery's podcast

16:04

American Scandal. We bring to life some

16:06

of the biggest controversies in U.S. history.

16:08

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16:11

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16:13

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16:16

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and often for committing only minor offenses.

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16:32

judges, and when the full picture emerged,

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it made national headlines. The judges

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can listen ad-free on the Amazon Music

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or Wondery app.

16:56

Thanks for letting me leave you in suspense about

16:58

whether or not Doug Lindsay's longshot abstract

17:01

got accepted for the 2002 meeting

17:04

of the American Autonomic Society. It

17:07

was. To this day, he's not

17:10

quite sure why. Might be that

17:12

the guy who reviewed the proposals assumed

17:14

that Doug was a doctor. And it's

17:17

in there as DM Lindsay, and

17:19

I lived in University City. There's

17:21

a chance that DM Lindsay from University

17:23

City thought I was a doctor. I don't know. So

17:26

I don't understand how a 24 year

17:28

old college dropout got accepted to present at

17:30

this medical conference. But when they said yes,

17:32

I said I'm coming. He had won a

17:34

slot at the poster session. He'd

17:37

have three minutes to speak to a group of doctors

17:39

clustered around a four by five foot poster

17:42

that Doug designed to outline his

17:44

theory.

17:45

So I called a local store and they donated

17:47

a thousand dollar suit for me to wear in my wheelchair.

17:50

And I reached out to an artist

17:53

who drew kidneys and hearts. I used

17:55

my old newspaper layout skills

17:57

to design my presentation.

17:59

It was easily among the best there because

18:02

nobody else's life was riding on theirs.

18:05

With the help of some friends, he raised enough

18:07

money to buy a row of seats on the

18:09

plane so he could lie down in flight.

18:12

Wow! And

18:14

so how did it go? Did it lead to anything

18:16

useful? Like I spoke well and so

18:18

I finished

18:19

until they went, we have to go to the next poster.

18:23

And so I felt dejected because, you

18:25

know, there were no claps. There was no like, you know,

18:27

come with me young man, you know.

18:30

In his talk, he describes that day like

18:32

this. The poster before mine

18:34

was from the Mayo Clinic and the poster after

18:37

mine was from Japan. And in the middle was

18:39

me, a 24

18:40

year old patient in a reclining

18:42

wheelchair outlining a proposed treatment

18:44

for my own disorder. Now

18:46

the talk went well, but I hadn't gone there just

18:49

to talk. I'd gone to find a collaborator,

18:51

somebody to work with. And on that I came

18:53

home empty.

18:54

He did meet a few doctors at that conference,

18:57

but by the time he returned home, it

18:59

was back to networking, writing

19:01

emails, wheeling himself into

19:03

specialists' offices to make his case.

19:07

I'm there at home and I'm

19:10

struggling because I'm reaching out to lots of scientists

19:12

and I'm having lots of conversations, but I'm also getting

19:15

lots of nos, getting blown off by doctors,

19:17

by PhDs, by all sorts of people. At

19:20

one point, he learned about a surgeon at Washington

19:22

University in St. Louis named Michael

19:24

Brunt, a general and endocrine surgeon

19:26

with particular expertise in adrenal

19:29

surgery. This is

19:31

Dr. Brunt. He comes to the clinic and

19:33

he

19:34

has very limited mobility.

19:36

He is mostly supine, lying

19:39

down because he has this autonomic

19:41

dysfunction. He had done

19:43

a lot of research about this and

19:45

was convinced his adrenal glands were a part

19:48

of the problem. And despite

19:50

my background experience in endocrine surgery,

19:52

this was not something I had heard of. And

19:55

to be honest, I was a little bit skeptical

19:57

about whether this is something

20:00

that would require surgical

20:02

treatment and specifically removal

20:05

of his adrenal glands. I was not

20:07

inclined to carry out surgery

20:09

at that time. Honestly, it's

20:11

not that Brunt was being a jerk or not taking

20:13

Lindsay seriously. He was just

20:16

being a good doctor. You know, first

20:18

do no harm. I think in medicine and

20:21

particularly in surgery, we

20:23

tend to be a little bit conservative in

20:26

treating patients oftentimes and appropriately

20:28

so. And so you want to be really

20:30

careful about

20:32

doing something as aggressive as taking

20:34

out both of someone's adrenal glands,

20:36

which means that they are going

20:38

to be dependent on replacement hormone therapy

20:41

the rest of their lives. And that's not something we take

20:43

lightly because there's risks of that. But

20:46

Doug Lindsay being Doug Lindsay, he

20:48

did not give up.

20:49

He returned to Dr. Brunt's office the

20:51

following year

20:52

and then the next year and then

20:55

the next year and then the next

20:57

year. So for four years, I rolled

20:59

into his office in a wheelchair and said, I think

21:01

if we do this surgery, it will help me. He

21:03

was always helpful, but he didn't do the surgery,

21:06

but we kept the relationship alive. In

21:08

the meantime, of course, Doug continued

21:10

to correspond with any doctor who might

21:12

take an interest in his case. And

21:14

sure enough, 18 months after

21:17

his presentation at the conference, Doug

21:19

reconnected with Cecil Coughlin,

21:21

a professor and clinician at the University

21:24

of Alabama, Birmingham, who had chatted

21:26

briefly

21:26

with Doug after his presentation

21:29

at that medical conference. And

21:32

after five years sick, Dr. Coughlin

21:34

runs an extensive autonomic

21:36

battery on me of tests. And

21:40

I come back with a severe dysautonomia.

21:42

I had elevated adrenaline levels

21:45

beyond what they should have been. So

21:48

the theory is remove your adrenal gland? So the

21:51

adrenal gland has two parts, like a hard boiled

21:53

egg. The outside makes steroid

21:55

hormones, cortisol, these things you need to live.

21:58

That outer shell is called the cortex.

22:01

There was nothing wrong with Doug's cortex.

22:04

It was there producing important hormones

22:06

that he needed to live.

22:08

But the inside is a different

22:10

kind of tissue and it makes adrenaline. And

22:13

we're saying if the that the inside of the adrenal

22:15

gland is releasing adrenaline in

22:17

a misbehaving manner as if it's a tumor.

22:20

So if we take it out, maybe I'll

22:22

get better. And that's where I say if there's no

22:25

good surgery that exists, I'll invent one.

22:28

You are not normal. No.

22:31

So but my definition

22:33

of what's possible is different.

22:36

But first of all, was it really

22:38

true that nobody in the history

22:40

of history had ever done this exact

22:43

surgery, removing the center of

22:45

an adrenal gland? Once more, Doug

22:48

hit the books. And I'm scouring

22:50

the globe and I find that this surgery

22:52

that I need and that everyone thinks is impossible

22:55

had been done in cats at Harvard

22:57

in 1926. This

22:59

guy named Walter Cannon, who's so important

23:01

he has a mountain on the East Coast named after him. And

23:04

he's this legend at Harvard.

23:06

Side note, he's right. I consulted

23:09

the Oracle Wikipedia. Walter

23:12

Cannon lived from 1871 to 1945. And he really was a medical legend.

23:18

He was the first person ever to use x

23:20

rays to study how swallowing and digestion

23:22

work. He discovered how adrenaline

23:25

works. And apparently, he

23:27

invented the beer bomb.

23:31

Wait, what? So Walter Cannon

23:33

wanted to understand the role of how

23:36

changeable body temperature was. So

23:38

he ended up trying to feed ice water

23:41

to deer to see if it would change their

23:43

core temperature. They had to put a tube down

23:45

the deer's throat.

23:46

And then he tried it on humans. And he's like,

23:49

they hate having a tube down their throat.

23:52

But if they just put the funnel and the tube in

23:54

their mouth and you just ask them, they

23:57

can drink cold water really

23:59

fast.

23:59

And so Walter Cannon accidentally

24:02

invented the beer bong. Okay, well

24:04

Wikipedia doesn't say anything about Walter

24:07

Cannon and the beer bong, but

24:08

it does say this, which I love.

24:11

Dr. Cannon was once offered a job at

24:13

the Mayo Clinic for twice his Harvard

24:15

salary. Cannon declined,

24:17

saying, I

24:18

don't need twice as much money. All

24:20

I need is 50 cents for a haircut once a

24:22

month and 50 cents a day to get lunch.

24:26

Anyway, Doug now realizes that the

24:28

adrenal gland middle removal surgery

24:30

has indeed been performed

24:33

on cats 82 years earlier. And

24:36

as he continues to rummage through these old scientific

24:38

papers, he also learns that...

24:41

It

24:41

had been done in dogs and a librarian

24:43

at Oregon Health Sciences University, she's

24:46

the one who tracks down the paper from 1923

24:50

where it had first been done in Argentina.

24:54

And so we get this article and explains

24:56

how to do the surgery and he says trying

24:58

to take the middle out of the adrenal gland and leave the

25:00

outside is like trying to cut

25:03

the peanut butter out of a peanut butter sandwich

25:06

and leave the bread. He said he sliced

25:08

into the adrenal gland with a sharp Gillette blade

25:10

and opened it like a book.

25:12

Then he scraped out the middle with a

25:14

small hard spoon. Then he

25:16

sewed it back up. And so it

25:19

was a concept of scraping rather than

25:21

cutting that enabled a

25:24

shift immediately that this these

25:26

two tissues could be divided safely

25:28

because the dogs lived. Two of the dogs

25:30

escaped 24

25:31

hours after surgery and apparent good health. So

25:35

dogs and cats.

25:36

But as far as he could determine, this

25:38

exact surgery had never been done on a

25:41

person. By this

25:43

point, Dr. Coughlin had retired.

25:46

But if we've learned anything so far,

25:49

it's that Doug Lindsay does not give up. He

25:52

persuaded Coughlin to champion his

25:54

cause among his colleagues at the

25:56

University of Alabama.

25:58

And so a non-coupling

25:59

A prophet named Wings of Hope put me

26:02

in a free medical flight. I lay on a stretcher

26:04

in a small private plane, and they flew

26:06

me from St. Louis to Birmingham and back so

26:09

I could get this surgery, because I was too sick to travel

26:11

any other way at this point. How many years had

26:13

it been now that you were sick? 11 years.

26:19

Lindsay has two adrenal glands,

26:22

of course. So do you. But the

26:24

surgeons had decided that the safest approach

26:26

would be to operate on only one of them. This

26:29

was, after all, experimental. If

26:31

it turned out to be dangerous, Lindsay would still

26:33

have one adrenal gland left. And

26:36

so, on September 17, 2010,

26:37

Coughlin's

26:40

longtime colleague, Dr. Martin

26:42

Heslin, scraped out the center of Doug

26:44

Lindsay's left adrenal gland using

26:46

a da Vinci surgical robot for its

26:48

precision in very tight spaces. The

26:51

surgery wasn't a flawless triumph.

26:54

During the procedure, what was left of Doug's adrenal

26:56

gland, the now empty cortex, fell

26:59

apart. We ended up, like,

27:01

we ended, the two parts, we ended up pulling the whole thing,

27:04

but because the other gland was in place, I didn't

27:06

have any negative repercussions from that.

27:09

So, yes, Doug survived

27:11

the surgery, and now only one

27:13

of his adrenal glands was pumping out absurd

27:15

amounts of adrenaline instead of two.

27:18

But upon arriving home, he still didn't

27:20

know whether any of this had accomplished

27:22

anything. He didn't feel any better,

27:24

at least not right away.

27:27

But about three weeks after the surgery,

27:29

now I can sit for about three hours, two

27:31

or three hours, instead of just the length of a meal.

27:34

Wow. And so, shortly after that, I

27:36

can walk two, 300 feet, and

27:38

I'm walking further every day. And

27:41

I thought, if I could walk to the corner and

27:43

back, and corner and back, then I could

27:45

go all the way around the block. If

27:47

I could go all the way around the block, and then I would start

27:49

building that way. And so, I went

27:51

from being able to walk 50 feet in September

27:54

to being able to walk over four miles by

27:56

the end of January.

27:57

So, were you like... Hooray,

28:00

the surgery is a success.

28:02

I'm fixed. I mean, this

28:04

capacity to be active for, you know,

28:08

90 minutes or something didn't translate

28:10

fully into being able to have the

28:12

stamina to live a normal life.

28:14

Doug got better and stronger as the months went

28:17

by,

28:18

but only up to a point. Then

28:21

his recovery plateaued.

28:22

He'd gotten as much healthier as he was going to

28:24

get.

28:25

And so he began to think, what

28:28

about my other adrenal gland? That

28:31

one is still flooding me with adrenaline.

28:33

Maybe we can hollow that one out too. The

28:36

surgeons in Alabama were reluctant to

28:38

attempt the surgery again. But

28:40

remember Dr. Brunt in St. Louis?

28:43

The one who had said, I was not inclined

28:45

to carry out surgery in him at that

28:47

time. The guy Doug had visited

28:49

every single year? Well, Lindsay's

28:52

fifth annual visit was

28:55

after his first surgery. This

28:57

time, Dr. Brunt began to reconsider.

29:00

We had a lengthy conversation.

29:03

I thought about it given the fact that he

29:05

had gotten somewhat better, but was still

29:08

very limited. Then that

29:10

gave me the confidence to say, I think this

29:12

is reasonable.

29:13

And he said to me, if you're still struggling a

29:15

year after the surgery, I would find that compelling.

29:18

So I circled on the calendar a year to the surgery,

29:20

knowing that I wouldn't talk to any of the surgeons

29:23

about another surgery until it had been a year.

29:26

And so it was that on Doug

29:28

Lindsay's sixth annual

29:30

visit,

29:31

Dr. Brunt had finally heard, seen,

29:34

and waited enough. And he did

29:36

the second surgery. One

29:38

fine day in June 2012, Dr.

29:41

Brunt delicately scraped out the

29:43

medulla, the middle of the gland, that

29:45

was producing too much adrenaline. He

29:47

left behind the cortex, the outside

29:50

portion, that produced other stuff Doug

29:52

needed to live. And he did this

29:54

procedure laparoscopically. It's

29:56

what they call keyhole surgery. That's

29:58

where you don't cut the pain.

29:59

open. Instead, you

30:02

make a tiny incision and

30:04

then you thread a thin rod or cable

30:06

through. At the far end, it has a camera,

30:09

a light, and whatever surgical tools

30:11

you need.

30:12

And so we did this procedure

30:15

laparoscopically or minimally invasive

30:18

and preserved a portion of his cortex. He

30:21

had a completely uneventful recovery from the surgery.

30:23

And what was most

30:26

amazing to me is that he became

30:29

functional again. It is not

30:32

perfect, but he was able to

30:34

walk and to get out and about.

30:36

It was a success. My adrenal gland lived.

30:39

We took out the stuff we wanted.

30:41

Now, nature gave Doug Lindsay that gland

30:43

for a reason, to produce adrenaline

30:45

and stuff like that. So without it,

30:48

he'd have to start taking hormone replacement

30:50

drugs.

30:51

I describe it like blowing up the dam,

30:54

right? The surgery blew up the dam and now here

30:56

comes the water. And the changes in

30:58

my physiology required all

31:00

of these medication changes to rein

31:03

in what had changed. So this may

31:05

not be your favorite question, but

31:08

can you blame the doctors who

31:10

for years would not take you seriously because they

31:12

never seen it before? Yeah. So

31:15

there's 7000 identified rare diseases.

31:17

Those are just the ones identified. So you

31:19

can't blame doctors for not knowing.

31:22

The challenge is when they

31:25

are hostile

31:29

to

31:30

the patient who has brought

31:33

their curiosity to bear and

31:35

found something that is outside the working

31:37

knowledge of the physician. So I

31:40

learned to partner with doctors and learn

31:42

to fit in and help fill the gaps where

31:44

they would get stuck.

31:46

All told, over his 14

31:48

year odyssey,

31:50

Doug Lindsay worked with 35

31:52

doctors and professors at 28 universities

31:55

and hospitals.

31:56

That approach to partnership is exactly

31:59

what impressed

31:59

Dr. Brunt. I think it's just a lesson

32:02

in persistence, but doing it in a thoughtful

32:04

way and really understanding

32:07

the medical and scientific literature

32:09

on a problem to come

32:11

up with his own solution to it. By

32:13

this time, Doug's mom was too sick

32:16

to benefit from the surgery he'd developed. But

32:19

as part of this journey, Doug had

32:21

also developed new uses for

32:23

some existing medicines. For

32:26

example, he'd tried repurposing

32:28

an old beta blocker drug.

32:31

See, a beta blocker is a treatment for

32:33

high blood pressure, and it works

32:35

by convincing your heart to beat slower

32:38

and softer.

32:39

And it does that by blocking the

32:41

effects of a little hormone called, that's

32:44

right, adrenaline. That

32:46

same beta blocker helped extend his

32:48

mom's life, eight years beyond

32:51

the doctor's predictions.

32:52

So in a way, you did. You did

32:54

help her. And that same use, my

32:57

aunt is now healthier in her 70s than she

32:59

was in her 30s because of that same

33:01

new use for an old drug. She ties her own

33:03

shoes. She drives a car. She can sit on an exercise

33:06

bike. And so she's living a life that

33:08

she never believed was possible.

33:10

And I mean, honestly, wouldn't

33:13

have happened if you weren't good

33:15

with words, good with people

33:19

and freaking relentless. And very lucky.

33:21

You can't control when someone picks up the phone.

33:24

You can't control when they

33:26

answer your email or not, or whether they're on vacation

33:29

or not. So luck is

33:31

a part of it and faith as well. I

33:33

mean, that's a little surprising because

33:36

you would be held up in some philosophies

33:40

as the proof that there isn't a kind God.

33:42

Yeah. You know, there's a hardness to

33:44

life. I mean, there is love,

33:46

there is kindness, there is good. And

33:50

you know, there's such a beauty to the world

33:53

when you see these things that you say, I

33:55

think there's a God. I went to Jesuit

33:58

schools. I learned science.

33:59

from people who had

34:02

faith. I don't see them in opposition.

34:04

And when I see the elegance of the

34:06

universe, I see

34:09

a watchmaker behind

34:11

the watch. And that fits

34:13

very neatly with the ethos

34:16

of the journalist who's searching for truth and

34:18

the ethos of the scientist who says you

34:20

run the experiment. And when you lay those

34:22

things together, you develop something

34:24

really powerful that could sustain me

34:27

when things were very hard.

34:29

Today, Doug tries to use his superpowers,

34:32

polite perseverance, and fresh approaches

34:35

in an entrenched medical system to

34:37

help other people who might be in his position.

34:40

So what I'm doing now is I work as

34:43

a personal medical consultant. For

34:45

a small number of people with complex

34:47

conditions who find themselves stuck in the

34:49

medical system, I basically join

34:52

their family for a year and see

34:54

if we can find something that was missed.

34:56

Well, I'll tell you, if I had an ailment,

34:59

I would want somebody with your research

35:01

doggedness and networking skills

35:04

on my side. Thank you. I don't like

35:06

dealing with sickness and illness, but when I run

35:08

across someone who's struggling and there's a chance

35:10

that what I've been through can help, I

35:12

like to try.

35:14

That's the part that impresses his surgeon, Dr.

35:16

Brunt, the most. He's really

35:18

a remarkable person. And I'm so happy

35:21

that he's got his life back and is

35:23

out there and able to not just engage,

35:25

but to also try to do something good for

35:27

other people. He's been an advocate for

35:30

this all over the country. Certainly I

35:32

learned a lot from it as a physician and surgeon

35:34

from that experience. And I think it's

35:36

good for us to

35:38

keep an open mind and not be

35:41

so rigid about

35:42

certain problems that

35:45

patients have sometimes, and to really

35:48

listen to them and listen to their story

35:50

about what their problem is. And I

35:53

would say this has been my 30 plus year career

35:56

as a surgeon. It's been one of the most

35:59

rewarding.

35:59

rewarding and interesting and educational

36:02

patient care experiences

36:04

that I've ever been a part of.

36:06

So, okay, we get that

36:09

Doug Lindsay was relentless despite

36:11

being flat on his back

36:12

and tireless while being completely

36:15

exhausted. And yeah,

36:17

his story has a happy ending. But

36:19

what gets me is that there was no way

36:21

for him to have known that there would

36:24

be a happy ending. But

36:27

in 2004, you couldn't see around the corner. No,

36:29

no. Did it ever strike you

36:31

that you'd become this relentless pit

36:33

bull of a researcher and

36:35

it might be for nothing? Well, so

36:39

as a doctor, there's not necessarily a right

36:41

or wrong time to give up. And

36:43

as a patient, there isn't either.

36:46

But as a scientist, you run the experiment.

36:49

And so it was my job to persevere

36:52

until we could run the experiment. And

36:54

that's how I was somebody who wouldn't quit.

36:57

In the modern West, we have

37:00

Superman and Spider-Man, one hero.

37:02

He stops the train. This one saves the

37:05

day. But I started reading and I read

37:07

things that had passed the test of time.

37:10

And to the ancient Greeks, if you

37:12

read the Iliad, there's room for people

37:14

to be heroes, even if they're flawed. And

37:17

there's room for you to be special, even

37:20

if you're next to Achilles, who's the world's greatest

37:22

warrior, because

37:24

there's more to cover in a war than

37:26

one person. I was able to see

37:29

that if this was a quest,

37:32

that I could be a flawed hero

37:34

and just keep

37:36

trying. Because to the Greeks,

37:39

the Trojan hero, Hector, who died

37:41

was a hero. He lost

37:44

the war and he died. What was heroic

37:46

was his effort.

37:48

And so

37:49

I was able to shift heroism

37:51

from the person who saves the day to

37:54

the person who strives and

37:56

toils and endeavors

37:58

heroically. So those...

37:59

two pieces fit together to

38:02

power something. So how

38:04

are you now? I'm pretty good.

38:07

I'm held together by duct tape. Like

38:09

I, you know, like I take eight meds a day

38:12

and yet

38:13

I can drive a car, I can go to a

38:15

meeting, I can, you know, go fly fishing,

38:17

have health challenges that are real and continuing,

38:21

but I also have a chance

38:23

to build a life and that's what

38:25

I'm working on.

38:35

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38:37

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