Hi everyone and welcome back to Airway First, the podcast from the Children's Airway First
Foundation.
I'm your host, Rebecca St. James.
My guest today is Dr. David McCarty.
Dr. McCarty is a board certified specialist in sleep medicine and a pioneer in the practice
of patient-centered care for those who suffer from sleep disorders.
An award-winning educator, he is passionate about empowering individuals with knowledge
that restores confidence and personal agency as each patient navigates the landscape of
disease and wellness within an increasingly fragmented healthcare system.
He is also the co-creator of Empowered Sleep apnea, an innovative cross-platform educational
project combining storytelling, cartooning, scientific rigor, and quite a bit of fun,
all in the name of helping individuals navigate the fascinating but complex disorder known
as sleep apnea.
Launched in 2023, the project comprises a website, a book, a blog, and a podcast.
The Children's Airway First Foundation is proud to partner with Dr. McCarty and Empowered
Sleep apnea in an effort to help create more information, education, and understanding
around the subject of airway and sleep apnea.
You can find out more about Dr. McCarty at EmpoweredSleepApnea.com.
And now, let's dig into the first part of our two-part series with Dr. Dave McCarty.
All right, good morning and welcome to the podcast, Dave.
Good morning.
Thank you for letting me come on here.
It's a pleasure.
Absolutely.
And before we get started, I'm just going to let people know, because I think it happens
sometimes, I'm kind of gushy on this particular podcast because I started reading the book
about a week and a half ago, maybe, about a week ago.
And I cannot recommend it enough, and even with all the books that I've read so far,
it's very different.
You take a very different approach, which I think is part of its uniqueness, chopful
of so much information.
And as we were talking about a little bit before, it's caused me to look at my airway journey
differently and my daughters differently.
So it really is a very unique experience.
Yeah.
That makes me so happy.
That was totally the intent.
Good.
I love it when the lights come on and suddenly these connections are made and you're like,
oh, I'm thinking about it in this new way.
I'm able to deconstruct this in a way that makes sense and allowing people to see that
complexity in a way that's not scary.
That's what this whole project is about.
Yeah.
And to that point, I mean, just to kind of show people a little show and camera roll.
See, I mean, it's not scary.
Even the book is inviting.
And I will warn somebody before they get their ticket and get on the boat and start through
this journey is not a fast read.
Don't expect that.
It's not supposed to be.
You take points along the way and there's reflection and there's activities.
So it is a journey.
Yes.
It's meant to be an adventure.
The whole style of this project came about due to my partnership with my co-author, Dr.
Ellen Stofford.
We started this project as an audio project because the backstory is that I had developed
a curriculum with my patients, which I taught to all my patients.
I sort of refer to it as the empowerment curriculum.
And essentially it's what amounts to part one of the book.
The first section of the book is all the stuff I would teach people on day one.
And individually, I would vary the curriculum a little bit person by person depending on
what they needed.
But it would usually take about an hour.
That's a lot of instruction.
But if we got that curriculum across and the patient got their feet on the ground and felt
like, I got this.
I can navigate this complex terrain because I understand the jargon.
It's not scary.
Then magic happens.
That's when the magic happens because the patient is fully engaged and they understand
what the stakes are and they understand what their decisions mean.
No one in my clinic ever felt coerced into a treatment.
That's just not the way it worked.
Here's what we are looking at.
Here are the possible options.
And there's actually lots of different things that one can try for a problem like sleep
at night.
And then here's where you are.
And let's talk about where you are and why you might need treatment.
So boiling that down and deconstructing that complexity in a way that doesn't scare people.
That's what the project is about.
But I realized that when I first started to try to put this into a textbook, the magic
was lost somehow because it wasn't engaging.
Like a textbook is kind of scary.
It's got charts and it's got tables and it's got jargon that you have to learn and memorize.
And it's coming at you all one way.
So the recoil response to that education is just human nature.
I spent about six months trying to write this textbook and I got frustrated and every time
I read it back to myself, it was just terrible.
I tried putting humor in and I likened it to standing with a knife while smiling.
It was so scary.
The humor just made it creepy.
So this is when I called Ellen and I said, maybe it's something about the conversation.
Maybe this has to be captured in slight.
Maybe we'll talk about that curriculum somehow.
So she said, graciously, she came along for the ride and said, sure, I'll participate
in that.
And it turns out that what we discovered is in order to make this accessible, we had to
really embrace the adventure.
And as soon as we discovered that, I thought to myself after one of our conversations that
didn't end up making the final cut, we tried several iterations of the recording process
before we came up with something that worked.
And the thing that gelled it all together was I went home that day and I said, you know,
what's the thing that makes me want to go on an adventure?
You know, and I remember back when I was a kid, I had an illustrated version of Peter
Pan and the frontispiece was an illustration of Never Neverland, you know, the island.
And it had the Pirates Cove and it had like skulls on it and little exes and stuff.
And all I wanted to do was look at that.
When I was reading, I'd go back and look at it and imagine that I was there.
Where am I on there?
Yep.
Yeah.
And I was like, well, if that's what engaged my adventure, then maybe we should have a
map to this journey.
And that's when I went home and I drew that isle of sleep apnea map, which I sort of giggle
at because I love dad jokes.
And even that's a dad joke.
I love sleep apnea.
It sort of engages you in a different lens, you know.
And as soon as I drew out the geography of how this decision making should happen, you
know, that you have to talk about certain things up front before you can go here, before
you can even talk about treatments, then it all sort of made sense.
And then suddenly we've got a whole new creation on our hands.
If we can embrace the zany, then, you know, this, this sort of guilty habit that I have
of cartooning, this is sort of my answer to my own ADHD tendencies is during lectures
to pay attention, I'll just draw pictures, you know, and sometimes I'll capture something
in the lecture.
I've been doing that my whole life and my teachers, you know, in grade school and middle
school, they were ripping my homework up for this.
So I've always sort of had this guilty shame of the cartooning habit.
And lo and behold, it's also an extremely disarming art form.
So we can take really complex subjects that might feel threatening to talk about, and
we put them in a cartoon, then all of a sudden get our hands around it and feel like we can
talk about that problem.
And interestingly, our tuning of this that opened up a lot of opportunities to talk about
difficult subjects, both in the management of sleep apnea, but also for the entire specialty,
you know, how we communicate with other professionals, the cartooning has come in handy and talking
about those types of problems too.
And I'll tell you, it helps too, as you're going through the book and you digest it and
you're entering this Bay of Narrative when they see the map, you'll understand that
the book opens with this cartoon and this lead character is going to guide us through
this and he appears and you have these little stopping points throughout the way, which I
encourage parents as you get the book, take a minute, take the stopping point, don't blow
by that cartoon.
Because I will admit the first one I kind of went, oh, that's cute.
And I kept going.
And I was a few pages away and thought, wait, didn't he, and I went back to the cartoon.
There's a reason they're there.
They're not just fillers.
He was introducing it.
It's the segue.
You know, hey, we're about to talk about something kind of difficult and here we are.
So you know, as we're going through.
I'm glad you noticed that, Rebecca, you know, because the cartoons were definitely part
of the journey for me and the way they're placed in the book, they're meant to be a
little mental nap from the reading.
And it's actually, I hide stuff in them, you know, I tend to put little Easter eggs
in there to find.
I was about to say, I started looking at the pictures, not just words.
I'm looking for things now in the designs.
So I'd encourage you if you want to sort of have some fun, get a magnifying glass and
kind of see what's in there.
Because I build things in kind of for fun, but there's layers within layers.
And I think that's part of the point here is that the more you look, the more you might
find.
And so, yes, the cartoons are meant to be lingered over and it gives you more food for
thought as you go through it.
It does.
And I'll encourage parents.
I will put a link in our show notes to the podcast.
So it, and even if you don't do the whole series at once, do that first episode before
you dig in because you really, the two of you, you set it up so beautifully.
And I just, I just, I just really encourage that.
So I will put that there.
I'm going to tell people to do this.
Well, the first five episodes of our podcast, it's the first season, it's only five episodes
long, but it was basically a contrivance to get across what I call that curriculum.
I wanted to teach the curriculum that would help people unpack complexity.
So basically it's a vehicle to teach people about two five point mnemonics.
There are complexity sense making tools within this very complex problem.
And we can probably get to those in this conversation.
Yeah, we're going to touch on those.
Yeah, sure.
But that's what the whole first season is about is if you listen to all five episodes,
it'll give you a working knowledge of what those two complexity tools are.
And it'll help you communicate with your provider no matter what silo of thought they're in.
Right, right.
And you'll also get introduced to Robert, who to me is a great, it's not so much, not
so much as it applies to us for kids, but even as a parent that's going into this thinking,
the dental provider, the pediatrician, the sleep provider, they just want money.
My kids fine.
Yeah.
No, get to know Robert and you'll understand it's a very different perspective.
So it does even apply to parents.
So I really encourage that.
Okay, so we kind of an understanding for how the book came to be, which again, it is it
is absolutely magnificent.
And we'll dig a little bit more into I was just going to ask one, like, you know, how
can it benefit parents, but instead I want to approach that differently because I think
they'll know as we go through this conversation.
So let's just start with what is diagnosis based medicine.
And I think we all kind of know what it is, but what's wrong with this approach?
Yeah.
So this is kind of one of the things that's hard to talk about because it's a pervasive
way of the way our medical culture works.
But what we're dealing with these days is we have a compensation driven system.
So you know, if you have a diagnosis code that allows payment for something, it's going
to speed you along a pathway that will get you towards a treatment that's covered.
That's just the way that works.
You know, you get diagnosed with sleep apnea and you're seeing a medical provider and what's
covered by their insurance is going to be probably either positive airway of pressure
therapy or a standard mandibular advancement type oral appliance device.
That's what the insurance coverage will be for.
And this is all in flux too.
So a lot of this depends on your carrier and there are many rules involved.
But the bottom line is what insurance pays for is probably what you're going to get.
And then what follows from there is usually kind of a label based approach.
You come in specifically to follow up for your sleep apnea and then the questioning is,
are you using your machine?
And it becomes very treatment based.
And it's just human nature, especially with the fact that most of our providers are operating
on a schedule where they're seeing patients every 15 minutes.
And that might be mandated by their employer.
You know, so this is something that it's very hard to get your hands around and discussing
it actually tends to make people feel defensive because they're doing the best they can.
But the system tends to drive people towards this label based approach.
When you have a very simple version of this problem, then it works okay.
But then we turn around and we keep shaking our heads and wondering in the adult population,
why is the long term CPAP adherence rate 50 to 70%?
And the answer is it's hard to answer that question because those people leave.
And then you can't observe them anymore once they've left.
And in my experience, one of the reasons that people leave is that they feel disempowered.
You know, they feel like they have no agency.
They feel like this label based system ignores their humanity.
And this is where we come back around to the empowerment curriculum, something that recognizes
the individual's narrative, their reason for being there and helps them understand, you
know, why we're going to do something about this.
All of this is very standard education.
There's nothing in this textbook or in, I won't even call it a textbook, nothing in
the beautiful blue book that a standard medical provider would disagree with.
You know, this is why it's been so important to me that the blue book has been sort of
looked at and cherished by individuals from different silos of thought.
You know, Western Medical, my former mentor, Dr. Andy Cheson, who is a past president of
the AASM, gave me a favorable review for the book.
Dr. Keith Thornton, who's a pioneer in sort of the airway dentistry world with the mandibular
advancement devices.
He's the inventor of the TAP physicianer, read the book and loved it.
You know, pioneers in the more outlaws, airway-centered dentistry movement, which are outside Western
medical, have read the book and enjoyed it.
So the point is that the language unifies people and patients can sort of feel like
it can unify their environment.
One of the hardest things I've learned to talk about is that when people fall outside
the silo, let's think about maybe that 30 to 50% of people that just fall out of CPAP.
You know, when they fall out of that Western medical silo, maybe it's because they felt
it was pushed at them inappropriately.
Maybe they had an experience like my character Robert, who they were distrustful.
So now they're outside the silo.
How do they know what to do?
How do they know who to ask?
You know, and so this book is designed as a guidebook to help people deconstruct this
in a way that their providers can understand and embrace no matter what silo their provider
happens to be in.
You know, it organizes the thinking and the deconstruction of these very complex problems.
Right.
And gives them the tools, by the way, especially as parents, to where you're not in a silo
anymore.
That's the other thing I'm starting to figure out.
When you have, when you're empowered to, when you're empowered with the words and the tools
to have these conversations with your provider, you're empowered to help with your journey.
So you're going to work through this map together.
So you get to bring in and have a more holistic opportunity for treatment for your child.
So it's, you're not totally siloed.
And I think that's a very important thing to bring up.
So another thing you talk about, and I believe you talk about it in the podcast as well as
a sleep awake complaint, which is interesting.
That was one of those things that really resonated to me and I had to go back and look cartoon
a little bit too.
So because they didn't really understand it at first.
And you actually do talk about it at the podcast.
I remember now.
So well, first of all, what is this?
Because the term, it wasn't what I thought it was actually going to be.
And as a physician, what should you be listening for?
What do you listen for?
Yeah.
So this is an attempt to bring it all back and help the patient capture and characterize
their own narrative with respect to the sleep wake experience.
So let's just sort of break it down.
You know, when people come to the doctor, maybe let's say you show up in a sleep doctor's
office, a provider who is adjacent to sleep.
How do you talk about why you're there?
You know, and the answer is there's multiple dimensions.
And so we as providers can help people break it down.
I usually like to start with a very blanket question to get people oriented.
So I'll say, you know, let's think about your sleep and let's think about how you feel during
the day relative to your sleep.
And let's think about how satisfying that is, you know, and just I'll ask you a blank
question.
Are you satisfied with your sleep wake experience?
I mean, you know, if people say, well, yeah.
You know, sometimes they say, yeah, defensively upfront, because, you know, they're thinking
you're trying to sell them something.
And this is what happened with the character who had fired Robert.
You know, this man was defensive.
And he says, you know, there's nothing wrong with my sleep.
Because from his perspective, the chain of events went from unrelated complaints.
You know, so he came in and it was a standard screening type of primary care visit that
disclosed an irregular heartbeat and frequent trips to the bathroom during sleep.
So he gets sent to two different specialists, a urologist and a cardiologist.
Okay, fair enough.
But both of them know that there's a relationship between the complaint that they're seeing
the patient for.
Cardiologist was a fib.
The urologist was frequent nighttime urination.
Both of them know there's a connection between those problems and sleep apnea.
You know, so they're like just checking the boxes and sending them to the sleep doc.
And meanwhile, he's never complained about his sleep or his breathing once to a provider.
So he didn't understand.
Yeah.
So he's feeling manhandled and he's feeling roughed up and he's feeling pushed into this
machine that's going to take money out of his pocket.
So by the time he gets to the sleep doc, he's defensive.
And he's he's like, there's nothing wrong with my sleep.
And the question that sort of broke it open for the man who inspired Robert was, I said,
okay, so that means that you fall asleep easily at bedtime.
You sleep well through the night and deeply and you wake up feeling refreshed and restored
and you're not tired or sleepy during the daytime.
And he goes, well, no, that's not true at all.
And then both of us kind of shared a laugh, you know, it's like, okay, so I said, so maybe
it's not quite as satisfying as you like.
He says, well, that's true.
Those things are but and then I said, okay, let's talk about those things.
Let's characterize, you know, what this is.
So if you can rate your satisfaction on a scale of one to 10, let's say 10 out of 10
is perfect.
It would be everything that sleep should be deep restorative, you know, I feel great and
energetic during the daytime versus one out of 10 would be, I can't imagine this could
be worse, like this is as bad as it could be in this or any other universe, get them
to put a number to it.
And then all of a sudden, you start to get people engaging because they're like, oh,
okay, all these things might matter.
Okay, well, I guess on a scale of one to 10, I put it at about a six.
You know, that's a failing grade.
This is somebody who's like feeling something at this point.
So now my ears are pricked up.
You know, if somebody says, well, you know, it's fine.
When they kind of stammer that usually it's something under their control.
You know, it's like they know they drank too much caffeine.
They know they're having too much alcohol or something.
But when people are kind of serious about it, they're like, okay, someone's listening.
I'll give myself a five.
Like that's a failing grade.
So now we got to explore that five.
Okay.
So what were you thinking of specifically when you deducted 50% of your total grade?
You gave yourself an F, you know?
And so then they'll say, well, you know, it's hard often to get to sleep.
Well, my partner doesn't like it because I make noise and I snore.
So he often leaves, you know, and I wake up a lot and probably three or four times I wake
up and I'm like wondering if I'm going to get back to sleep.
And then during the day, I'm kind of scatterbrained and I fall asleep at my noon time meeting.
Okay.
Yeah.
Now we've got some narrative.
Yeah.
Now we've got some narrative.
Okay.
So now I understand what's going on.
And you know, this person has five out of 10 sleep satisfaction due to frequent inability
getting to sleep on the front end.
The sensation of light stage, poor quality sleep, easily awakened, prolonged, nocturnal
awakenings, you know, how many trips to the bathroom for Robert, it was two to three, you
know?
And then we get some sense of daytime neurocognitive impairment.
You know, falling asleep at the noon meeting, we can characterize that, you know, losing
my keys, not paying attention, feeling depressed and kind of irritable.
All of these are part of this spectrum.
So now we've got some meat on this.
Okay.
Now we've got a set of sleep weight complaints.
This can now guide us to go and when we're going to have our discussion for our first
deconstruction tool, which I call the five reasons to treat sleep apnea.
Now the patient can have that discussion with knowledge.
Okay.
Because the five reasons to treat, I might as well introduce them.
Everybody wants to do it.
Sleep apnea, that the label at this point encompasses such a spectrum of pathology that
the label sleep apnea is almost meaningless these days, because it can encompass such
a broad spectrum of what this means.
So you know, normally a diagnostic label that has an ICD-10 code, you think, well, there
should be a recommended treatment course.
Like you know, if you have an E. coli UTI, urinary tract infection, there is a standard
set of antibiotics that you should take.
You know, it's like boom, boom, you know what you're supposed to do.
Right.
Sleep apnea, because it's so complex, it involves an overlap between obstructive sleep apnea
and pathology, which is a collapse or a narrowing of the upper airway during attempts to breathe.
And it overlaps with something called central sleep apnea, which is a completely different
problem.
But it's an oscillation of effort to breathe that can be disruptive to the sleep wake experience.
And there's many moving parts with that too.
You know, so the many moving parts of obstructive sleep apnea, we all know about sort of being
heavy and having a collapsible upper airway.
That's the narrative for, you know, the folks that need CPAP, but there's a whole different
phenotype that's emerging that involves kind of deficiencies of what's called the craniophacial
respiratory complex, the bony constituents of the face.
You know, this is where our kids that we're talking about are there in this group.
Yeah.
So the concept of introducing, I call it many moving parts.
I think that's the second episode in our first season.
The concept of introducing there are many moving parts to this problem that is encompassed
under the label sleep apnea, and it's complex.
And there are different moving parts that are relevant for different people in different
combinations.
And so what follows from that logically is once you engage that engineering mindset,
then you can fully appreciate the fact that there is no one size fits all solution.
And there shouldn't be.
Right.
And that way alienates a substantial portion of the people who have this label or will
end up getting this label.
So the five reasons to treat discussion helps to unpack, you know, should we do something
about this for you and why?
And I'll just enumerate them.
There are five reasons to treat sleep apnea and there always will be five reasons to treat.
Different ones are relevant for different people, but that's why I built the monument.
So on the aisle of sleep apnea, there's this big Roman columned monument with big stairs.
And that's designed to sort of.
Yeah.
I don't know if it's.
It's like it's right there.
Yeah.
Your blur is taking it out of the picture, but it's in the middle of the island.
It's there.
You have to go there before you cross over into treated territory because that's where
you break it down.
And the five reasons to treat are risk, snoring, sleep, wake and comorbidities.
Okay, so let's just go through that risk is the first step to talk about.
And that's, I put it first because it's the hardest one.
It's really a nuanced discussion.
And once again, the cartoons, well, it's nuanced because not all sleep apnea is created equal.
Right.
We've got this idea that there's a metric of severity, right, called the apnea hypopnea
index.
Yeah.
So the AHI is kind of a standard metric that's reported, you know, typically an AHI of five
events per hour or more.
It depicts a diagnosis of sleep apnea.
That's kind of convention and part of the culture, especially on the sort of Western
medical side.
It's like the moderate, the severe.
And these labels come up to based on what that number is, mild, moderate, severe.
And those labels can take on the life of their own too.
Now, the problem here is that everything we know about mortality risk with sleep apnea
was really, we appreciate this knowledge based on very good prospective observational population
based cohorts.
Okay.
Where we take a large population of people, you measure their baseline metrics at the
beginning and then you follow that whole population forward in time.
Okay.
And it's a powerful clinical epidemiology tool to evaluate harm.
Okay.
And that's an important consideration.
So some of the major cohorts in this country have been the Wisconsin Sleep Cohort and the
SleepHeart Health Study.
Okay.
These both found a definite signal for AHI influencing long-term mortality, particularly
AHI when defined by, and I'm going to put this out there.
The way you define the hypopnea matters.
So a hypopnea is an event where the airflow drops for several breaths in a row, presumably
because the airway is constricted and then it recovers.
And because of that event, something physiologic happens.
So the classic definition for a hypopnea is a 4% drop in oxygen saturations as a result
of that flow limitation event.
Okay.
And that's the way SleepHeart Health Study and Wisconsin Sleep Cohort define their hypopneas.
So when we're talking about AHI, it's important to know that the mortality data that we all
think about was based on the AHI that used the 4% desaturation criterion.
Okay.
But what these studies definitively showed was that if the AHI was greater than 30 events
per hour, then there was a definite impact on long-term mortality.
People died younger.
And the signal is that they died younger all cause mortality, but also cardiovascular
mortality, which includes strokes and interestingly cancer mortality.
Okay.
So there's something uniquely stressful about repetitive attempts to breathe against a closed
or a semi-closed airway causing oxygen desaturations.
That is bad news for long-term mortality.
Yeah.
And it happens.
But now let's throw in a little complexity now.
Okay.
Let's throw in some complexity that an AHI greater than five may have some increase in
mortality.
It just didn't reach statistical significance.
It's hard to prove that it's due to one thing.
Okay.
Right.
So we're starting to get signal above an AHI greater than five.
So now when we go back and sort of reverse look at that and say, well, what if the 4%
AHI is less than five?
You'll get a group of people that say, you don't have sleep apnea.
You know?
Right.
Look at the mortality data.
And they're pointing at these wonderful studies.
Sure.
But the problem is this is such a multidimensional disease.
There are obstructive type flow limitation events that don't cause the oxygen to drop.
Okay.
This is more often the phenotype in younger people who have healthy lungs.
You know?
So these types of events, they can be scored.
Okay.
Those are scored as respiratory effort related arousals in a sleep lab.
And they can be disruptive to sleep.
Turns out that part of the diagnosis of obstructive sleep apnea is that if you're having symptoms
like, you know, let's say you've got a bunch of sleep wake complaints, you've got you're
dissatisfied, you're waking up a lot, you're snoring.
And you've got, you know, 15 respiratory effort related arousals or RIRAs per hour, but no
apneas and no hypopneas.
You know?
According to the American Academy of Sleep Medicine, you would still have a diagnosis
of obstructive sleep apnea in that setting because the obstructive event rate is greater
than five per hour.
They include RIRAs in that definition.
Now here's the problem though.
The way our standards are written, RIRAs are an optional event to score for labs to be accredited.
You don't have to, in other words.
RIRAs are troublesome, you know?
And traditionally, it has been a toss up whether some insurance companies will cover RIRA predominant
obstructive sleep apnea.
So again, we get this sort of treatment pathway that locks the thinking about this problem.
If you can't get treated for it, then it's not really a problem and there's no one to
tell you risk.
So, you know, you're not my problem.
So I've got 15 minutes, you know?
I can't get you on CPAP anyway.
So this is kind of the boots on the ground experience.
And when patients get that signal, they get confused because they're led to believe the
study was normal.
And that's not always the case.
So here we have complexity again.
So going back, let's say this person did get the diagnosis of obstructive sleep apnea because
they have 15 RIRAs per hour.
No apneas, no hypopneas.
What do we say about risk?
Well, this is where we can go back and say, well, yes, you qualify for the label sleep
apnea based on these criteria.
But what we know about this flavor of sleep apnea is that it doesn't seem to have an impact
on long-term mortality based on these population studies.
Okay?
So it's a subtlety that is often lost, especially let's say it's a lab that is being generous
with their scoring.
So the American Academy of Sleep Medicine has changed the definition of hypopnea.
So now a lab can use an arousal from sleep as the physiologic endpoint that allows scoring
of a hypopnea as long as there is that requisite 30% reduction in airflow on the airflow trace.
So now we can see how someone might get an AHI of 15, 20, 30.
When they're 4% AHI would have been registered.
Yeah.
Okay?
Holy smokes.
Now my brain is blown because now we're using the same three letter initials, AHI to mean
very different things about mortality risk.
Okay?
So again, going back to that first step, how do we talk about risk?
How do we present this to our patients?
Do we use a defensive stance and say, well, you have severe sleep apnea because your AHI
is 31 and severe sleep apnea, we have to treat this with CPAP because there's a stroke risk.
And now we can see how the patient might start to feel coerced.
Especially if they find out later that that AHI was generated using the AHI.
Using the arousal criterion instead of the 4% criterion.
So it would have no relationship to the AHI numbers that were reported by those important
population based studies.
So hence labels and numbers can be misleading.
What we need to do is unpack these for people.
And again, the whole project is about the fact that unpacking it requires an understanding
of the jargon.
That can be scary.
Jargon is scary for people, especially if they don't have confidence.
But that's what the Bay of Narrative is for.
That's what the Bay of Narrative is for.
Yeah, come to the Bay, have a fruit cocktail, I would say.
A nice fruit drink as we walk, drinking out of a coconut with a little umbrella is the
kind of state of mind you should be in.
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In our Parents Portal and Clinician Corner, you can find educational and informational
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And now let's jump back into my interview with today's guest, Dr. Dave McCarty.
So, you saw how long I rambled on about that.
There's a lot of jargon about risk and as a result, most providers don't do it and they
can't do it.
I'll introduce another flavor to this.
So we, to risk, before we move on, the discussion about risk again is based on those population
based cohorts, right?
Those were both studies that were done on middle-aged people, younger middle-aged people
to begin with generally, who were free of baseline cardiovascular disease, generally
at baseline, and who lived at sea level.
Three factors that I want to consider when now we're talking about another complexity
of sleep apnea, which is called central sleep apnea.
So central sleep apnea, again, is this oscillation of respiratory effort that happens as a result
of many factors.
And some of the risk factors for the development of more central apnea physiology events on
your study are aging.
So just being older and getting older means that your circulation time and cardiac output
tends to drop as a factor of aging-related cardiac disease.
And circulation time, how long it takes for your blood to get around the whole circuit,
around the block, when that's prolonged, it tends to lead to unstable respiratory control,
okay?
So the older that you get, the more cardiovascular disease you mount up and the higher elevation
you live at.
All of these are factors that influence how much central apnea physiology is going to
emerge.
Now, here's the rub.
Central hypopneas are a thing.
This is where it's not an absolute pause in effort.
It's a reduced amplitude and often a reduced rate of breathing that happens that creates
an airflow limitation that causes oxygen.
It is considered optional because it's hard to tell the difference between- often these
findings are mixed.
So there can be features of obstruction and features of central apnea physiology happening
simultaneously, one superimposed upon the other.
But the basic teaching point is the more risk factors you have for central apnea physiology,
the more likely it is that your AHI number is going to be weighted towards central apnea
physiology events.
Okay?
Now, keep in mind that a true central apnea, you can consider it a pause in breathing that
follows a heavy sigh, okay?
The heavy sigh is what happens during the recovery relative arousal phase.
And then what happens is just pause.
And it's an instability between those heavy sigh and pause type of states.
And that, you know, the pause can be relative.
It can be reduced effort too.
Now that type of an instability is not the same as struggling to breathe against a closed
or semi-closed airway, okay?
It doesn't produce the same type of physiology.
And to date, we don't have any reliable data that shows that pure central sleep apnea represents
a long-term mortality risk the same way obstructive sleeping, okay?
Gotcha.
Now, we've got that, then separated in our minds that, you know, we can think about them
kind of separately.
What happens when, you know, someone has maybe mildish obstructive sleep apnea and then they
start to get more instability with the respiratory effort as they get older.
And now they've got kind of a mixed phenotype and their number is kind of high.
Is this the same problem as Wisconsin sleep cohort, AHI 30 showing mortality rate, you
know, a survival rate of 57% at 18 years.
That's what that study showed.
When the AHI was over 30, as opposed to people with AHI at less than five, who's had basically
a 98% survival rate at 18 years, Wisconsin sleep cohort showed that 57% of that cohort,
AHI greater than 30 was still alive at 18 years.
That's a huge problem.
Okay.
But what if it's an 80 year old woman with atrial fibrillation who lives in the mountains,
who has a primarily central apnea phenotype, central hypopnea phenotype and she's going
to get a number AHI 35.
Is that the same problem anymore?
And your answer is it's not.
No.
Yeah.
The solution to her problem may be why don't you move to C level and see what happens when
you retest and maybe avoid back sleeping and sleep with your mouth closed, you know, to
handle whatever the obstructive component might have been.
So there's the concept of many moving parts is relevant to all of this risk discussion
too, you know, the discussion of a risk requires that we understand the difference between central
apnea physiology and obstructive sleep apnea pathology and those two things can be intermingled
with each other.
So I think I'm done talking about risk.
The second step of the monument is snoring.
By the way, in the little adventure, there's the five reasons monument and then coffee
hut.
Right?
It's five reasons to treat monument and coffee hut.
And I did that on purpose.
It was kind of a spur of the moment decision, but I realized I didn't want it to be a scary,
big monumental place that, you know, you had to regard with dignity.
You had to go and recognize it.
It's a monument, but then the place you need to go is the coffee hut because what you need
is about, you know, as many hours as you need to sit.
It needs to be a digest.
Yeah.
Inpatient place, you know, where you're not rushed.
And so for me, the image that came to my mind was was one of those old converted railroad
cars that's now a diner.
Yeah.
You know, yeah, I know.
All night.
You can stay as long as you want.
Time doesn't exist.
The waitress is real nice and you eat, pie and drink coffee.
So that was the liminal space that I felt was appropriate.
That was the opposite of the usual clinical encounter of, you know, you got 15 minutes.
Here's what sleep apnea is with this trifold handout.
Boop, boop, boop, and out.
Yeah.
You know, and to most people, unless it's very straightforward for them, they think
they find that dissatisfying and they know there's something more to it.
And if their case turns out to be more complex, then they end up looking back on that discussion
with a little bit of distrust.
And I think that's a problem that we should be talking about, you know.
And I think, and I want to, I want to interject here before we move on to snoring too.
That's another thing that you're going to learn throughout this book as you go on this
journey.
And I want parents to really, really hear this message.
We talk about it all the time, advocating for your child is so huge.
That's part of the empowerment project for sure.
Exactly.
I mean, yes.
I mean, okay, y'all went to med school.
Y'all are the experts.
Not denying that.
But to your point where 15 minutes were in and out, you're going to miss things.
So if your gut, if your instinct, if something is wrong, something was messed, something
was not addressed, say it, bring it up.
Go to a second opinion, but you keep advocating until you feel like, okay, I'm comfortable.
We're on the same page.
Let's move forward.
Yeah.
I totally agree.
And the language of the empowered sleep apnea project is designed around self-advocacy, but
it's designed also because this is a, this is a difficult project or a difficult process
for most providers, providers who are feeling time impoverished are feeling the rush of
that.
And a natural tendency towards being very straight and very direct with one's instructions.
And so you can fall into this systematized way that you feel there's no other way to
do it, you know, because you've got to get through this conversation and they have to
be aware of the risks and you can't let that remain unsaid.
You know, so it's a very difficult place for providers to be as well.
And this is the point of the friendliness of the book.
So, you know, so the subtext is the book is called a handbook for patients and the people
who care about them.
Those people who care about them are their providers, you know, so if we can share the
language patients out there, this would be a beautiful gift for your sleep doc or your
primary care provider because it is fun to read.
They can put it in their waiting room.
People like to sort of pick it up and look at it and it helps engage the conversation.
So if you can go in and your provider understands, you know, the whole five reasons to treat
paradigm and you can have that discussion, then things flow a lot more smoothly, you
know.
So, right, right.
I don't want to keep people in suspense.
Second reason to treat.
So, okay.
Yeah.
So I put that as its own distinct reason because it's a spectrum.
Some people are unaware if they snore, but they might still do it.
And there are ways to check on that so that you can use an app to sort of monitor and
play it back and see some people and go listen to your kids at night.
Oh, yeah.
And you can record them too.
Not just once.
Yeah.
Not just once.
Absolutely.
A couple of times.
More data is more better, you know.
There are people who have rip roaring, real life threatening sleep apnea who do not make
a sound.
You know, silent sleep apnea is a thing.
And so for people who say, well, I can't have sleep apnea because they don't snore, that's
an important consideration.
You know, it doesn't represent a reason to treat for you if you don't snore.
But right.
You may still need to treat this for the other four reasons.
Right.
That's enlightening for people.
Sometimes people don't have a bed partner.
And so they may not know if they snore, but they may have what I call snoring aftermath
symptoms.
I would say you have the signs.
Yeah.
So nasal congestion or irritability in the back of the throat, foreign body sensation,
dry mouth, wake up dry mouth, all this yucky crud back there.
That might be snoring aftermath.
So you know, if you're getting that and you're like, well, I don't know.
Again, we can use technology to try to characterize what this burden of snoring is for you.
When I talk about snoring, I want to know what the social burden is.
I want to know how this impacts people's decisions to go camping or go places with people.
Whether it's impacted sleeping arrangements at home.
You know, so you can get a real sense for what this is doing.
Because the other side of this is that snoring is not necessarily benign.
Snoring is vibrational trauma.
Okay.
Which creates an inflammatory response.
So snoring can be part of the pathogenesis of, you know, sinusitis, for example, it's
a mucosal irritant due to vibrational trauma.
And there are also some lines of data that suggest that the burden of snoring, okay,
meaning the intensity and the duration at night itself can be an independent risk factor
for getting atherosclerotic plaque buildup in the carotids.
Okay.
So it's just due to proximity.
All this, right.
Right.
Yeah.
It can be pretty high intensity stuff.
And it just damages the lining of the arteries.
Okay.
So a frank discussion about the impact of snoring on you, you know, my patient, that's what that
step is all about.
Really getting your hands around how much this matters.
Okay.
So at the end of the day, is snoring a reason to treat or not?
And the patient can say yes or no.
One word reasons to treat is just sleep.
You know, I've made these one word reasons to make it easier to remember, but the sleep
experience.
So this is where we go back and we flesh out again those sleep wake complaints that we
talk to our patients about.
How is the nocturnal experience?
Is it easy to go to sleep?
Is it easy to remain asleep?
Do you toss and turn?
Are you easily awakened?
Do you awaken in the morning with any physical discomforts?
You know, a lot of sleep apnea patients will have headaches in the morning and they're
just like, I'm a headachey person and they don't sort of think about it.
Nocturnal reflux, you know, acid reflux is always a problem with people with sleep apnea.
Not always, but you know what I mean.
When you're trying to suck and you're trying to sort of breathe against a semi-closed airway,
you're creating a suction for the abdominal contents to come up.
So a lot of people will be given the label of heartburn.
They'll be advised to take some sort of antacid medication to relieve the symptoms.
And it's never fully investigated as being related to something that's happening with
their breathing at night.
Same thing is true with frequent trips to the bathroom.
Nocturia is what that's called.
You know, normally the physiology during sleep is we're kind of designed to put a little
minimization of how much urine we're producing while we're sleeping.
That's just normal physiology.
That way we can sleep through the night.
But when people have sleep apnea, it changes the physiology of how fluids are sensed.
And it can actually increase the pressures in the right-sided elevated chambers of the
heart, the right atrium.
As a result of the vassal constriction that happens in the pulmonary bed during these breathing
events.
Okay?
And what that does basically is it tells the heart an erroneous signal of fluid overload
and the heart then sends a signal to the kidneys to make more urine.
Okay?
So a lot of times the frequent bacteria is a sign that the sleep apnea is putting a strain
on the heart and it's just connecting those dots can be hard.
If you went to a more label-based physician and said, I have frequent bacteria, they may
say, oh, well, it's your prostate.
Let's put you on a medicine for that.
And once that label gets a fixed, it's hard to think about it any other way.
That's hard to shake it.
And in children, it's probably going to present differently, correct?
Yeah.
In children, you might...
They're not going to get up.
They're just going to bed wet.
That's right.
Yeah.
Nocturnal aneurysis can be part of this picture for children for the same reasons.
Aneurysis is a complex subject, but it has to do with the sleep disruptive aspects as
well as the physiology of bladder control.
So that's the sleep experience.
Again, worth on line for the patient, worth going back to that original discussion at
the Bay of Narrative, how do you perceive your sleep experience?
What's wrong?
Why isn't it a 10?
Fourth reason to treat, the wake experience.
So this is where we unwind the patient's perception of quality of their daytime neurobehavioral
context in their waking day.
Do they feel like they can stay awake effortlessly?
Or do they have to stand up at meetings?
Do they fall asleep behind the wheel?
These are the more dramatic presentations.
There's a very commonly used Epworth sleepiness scale, which is a numeric score for how likely
you are to doze off during periods of inactivity during wakefulness.
That's helpful.
If it's elevated, anything over 10 and higher is typically considered too much daytime sleepiness
on that scale.
But it shouldn't be used to turn people away from care.
A normal Epworth score certainly doesn't mean you don't have any daytime neurobehavioral
impairment.
It just means you're not metathesting as inappropriate dozing episodes.
So sleep disruption and sleep deprivation, meaning you're not getting enough hours or
the hours that you're getting are so disrupted that you can't get all of that physiologic
sleep pressure out of your head.
That can produce symptoms that are really nonspecific, attention deficit, inability to
control one's emotions in kids is often what we see.
They often become hyperactive rather than dozy.
In adults, it can be a different spectrum altogether due to the chronicity of it.
How this affects people can go different ways.
Sometimes the chronicity of this fight or flight stimulation that happens at night can
lead to sort of a chronic overactivity of all of that fight or flight apparatus.
So people end up feeling anxious, twitchy.
They suffer from insomnia more than excessive daytime sleepiness.
They may present with stress-related syndromes like migraine headaches or TMJ dysfunction,
problems with their jaw joints, grinding can be part of that.
So it can be kind of not on the radar screen for what we usually think sleep apnea, which
is the classic presentation, of course, the pick-wicky syndrome of the heavy person who
snores and is falling asleep at the lunch table.
That's not the way it always is.
So again, many moving parts.
So helping to deconstruct the wake experience for people allows them to explore some of
these things that may have been labeled something else, anxiety disorder or ADHD or something
like that.
The last reason to treat is going to be consideration of comorbidities.
That's a mouthful, but it basically refers to the also-ran diagnoses, these other elements
on your problem list that are vulnerable to untreated sleep apnea.
And this is really meant to be a discussion between provider and patient.
It's a big one.
Yeah.
It's meant to be an inventory.
How are you doing overall?
What are we treating you for?
What are you seeing providers for or therapists for?
Could this be related?
And drawing attention to the fact that the reflux and the migraine headaches and the teeth
grinding and the frequent nocturia all could be part of this syndrome helps people say,
oh, okay, now I see what we're taking aim at.
Because the truth is, for many of these other problems, it's really hard to make them better.
You can manage them, maybe, but it's hard to make them better if you don't address the
underlying sleep disorder breathing.
Because it's that...
And this is where you talk about in one of the first two episodes about the boil the
frog thing.
Because they could be here and we're just going through life.
We've adapted.
We're just moving through it.
But all this damage is being done.
And no one has yet connected the dots.
So this is a real opportunity for providers to help patients connect their dots.
And the five reasons to treat it always helps shed clarity for folks.
So in the fictional character, Robert, in our podcast was based on a real life event
that actually caused me to come up with this discussion.
And it took a very hostile patient who was very distressed over the medical system with
a very significant and complex problem and allowed him to find his way through it.
And he became one of my best patients, best.
But he did well on his therapy.
But it was a complex journey that he never would have undertaken if he didn't understand
it.
And that was the important part of the experiment for his story.
And it turns out that he started the discussion when I said, are you satisfied with your sleep?
And he said, yes, defensively.
And then when we broke it down, we realized that he had elements in all five reasons to
treat that were pretty profound.
And so when he came away from that discussion, he was like, I get it now.
And I get that you're not trying to sell me something that this is this is pervasive.
And I didn't even see it.
And so at the end of the day for Robert, the character who the man who inspired Robert,
his actual solution was a was a complex one because he required management of several
elements that were contributing to his sleep-wake experience, not just his breathing too.
But again, the aisle helps you get there.
That's the other five point mnemonic on right, which is the five finger approach.
So I don't know that we're going to have time to go through this one.
This may be a subject for a different discussion, but the five thing I like is something very
helpful to that.
Yeah.
And I do want to dig into that.
But before we do that, I just kind of want to touch on a little bit more on comorbidities
because as a parent, that is such a scary word.
You know, when you think about your kids, right?
And we're talking about little people and they're, you know, they have decades ahead
of them.
And we think we're doing the right thing.
You know, we brush our teeth twice a day and we floss and we're eating.
Okay.
You have a cookie, but we had all these other things that were healthy and we're active
and we're controlling screen time and we're watching so many things right now.
And now we're, we're faced with this huge bucket of ADHD levels are everywhere and your
child has anxiety and your child has depression and you're looking around going to have this
happy balanced house.
What's going on?
These are all signs and symptoms and these comorbidities that we just don't talk about
with children.
We can be addressing them now and it's going to improve their health.
So this conversation is so critical for us to be having with our providers.
Absolutely.
And fortunately, there's a lot of headway that's being made in the idea of preventive
and functional approaches to malocclusion and orthodontia in children.
Because this is, this is where a lot of this rubber is hitting the road is in the dental
office.
Because in many cases, it's the first professional that's going to look critically at the size
and shape and function of someone's airway.
It's just not on the radar screen of many pediatricians to look at it with that in mind
yet.
You know, I think it will be and the more this signal is getting out there, you know,
the more we're going to be able to talk about it.
But for children, especially I want to emphasize to parents that mouth breathing is not normal.
Kids should breathe through their noses and they should breathe through their noses when
they're sleeping.
Snoring is not normal during sleep.
It's not cute.
It's not good for them and it should be evaluated.
And you know, cognitive issues like attention deficit disorder should be looked at critically
with respect to sleep because sleep is the original and best performance enhancing drug.
You know, so if we're having problems with performance, it's of course I'm biased because
I'm a sleep physician, but it is it can be subtle.
And if there's a question about performance, we want to really look critically at the sleep,
not just the breathing, but you know, habit surrounding sleep and whether that's conducive
to getting a good night's sleep.
So one of the great things about the empowered sleep at me a book, you know, among the wonderful
things that I think are in there, you can learn about these fundamental sleep wake processes
from this book.
It'll it'll teach you things about how to manage your circadian rhythm and about how
to think about your sleep so that you can make the behavioral choices that are conducive
to good sleep.
It gets into that complexity because it matters, you know, understanding that will allow you
another place to visit in your mind, your problem solving mind if things aren't going
perfectly on whatever strategy you've got for your airway at present, you know, gives
you stuff to work on.
Agreed.
Thanks again to today's guest, Dr. David McCarty for sharing his medical insight and
to each of you for listening to today's episode.
To hear part two of our conversation, check out podcast episode number 48.
And if you're new to our podcast, please don't forget to subscribe.
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Take care, stay safe, and happy breathing everyone.