Weird Medicine: The Podcast - 389 - Advances in Cystic Fibrosis with Gunnar Esiason
Episode Date: January 12, 2020Dr Steve, Dr Scott, Cliff Andrews, and Dave Ray Cecil (DaveRayCecil.com) discuss current concepts in cystic fibrosis treatment and the philosophy of medicine. Also a new song by Dave, ruined by Scott ...and Dr Steve PLEASE VISIT: stuff.doctorsteve.com (for all your online shopping needs!) simplyherbals.net (Dr Scott’s nasal rinse is here!) noom.doctorsteve.com (lose weight, gain you-know-what) tweakedaudio.com offer code “FLUID” (best CS anywhere) premium.doctorsteve.com (all this can be yours!) freshly.doctorsteve.com (how lazy are you? Get $40 off, and don’t cook!) Learn more about your ad choices. Visit podcastchoices.com/adchoices
Transcript
Discussion (0)
What do you call boogers on a diet?
Slim pickings.
Why did the rumor stop dating the sloth?
He never made a move.
How do you know if you're talking to an extraterrestrial?
Lots of probing questions.
You're listening to Weird Medicine with Dr. Steve on the Riotcast network, riotcast.com.
I've got diphtherio crushing my esophagus.
I've got subalabovir, dripping from my nose.
I've got the leprosy of the heartbound, exacerbating my imbettable woes.
I want to take my brain now, and blast with the wave, an ultrasonic, ecographic, and a pulsating shave.
I want a magic pill.
All my ailments, the health equivalent of citizen cane.
And if I don't get it now in the tablet.
I think I'm doomed, then I'll have to go insane.
I want to requiem for my disease.
So I'm paging Dr. Steve.
It's weird medicine, the first and still only uncensored medical show in the history broadcast radio.
Now a podcast, I'm Dr. Steve, with my little pals, Dr. Scott, the traditional Chinese medical practitioner,
keeps the alternative medicine wackos at bay.
Hello, Dr. Scott.
Hey, Dr. Steve.
And we also have in the studio, Dave Ray Cecil, from...
from Dave Ray Cecil.com,
singer-songwriter, well-known to people on the show.
Hello, Dave.
And Cliff Andrews, also known on Twitter as WM. The Interner was.
He was going to change it.
Did you ever change it?
I did change it.
I did.
We'll talk about that in a second.
Thanks for being here, Cliff.
Yeah, thank you.
This is a show for people who had never listened to a medical show on the radio or the Internet.
If you have a question that you're embarrassed to take to a regular medical provider,
if you can't find an answer anywhere else, give us a call at 347-7-66-4-33-3-3-3-3.
That's 347.
Poo-Head.
Follow us on Twitter at Weird Medicine or at Lady Diagnosis.
She will be back or at D.R. Scott W.M.
And Cliff, what's your Twitter now?
At Cliff Medicine.
At Cliff. Oh, I like it.
Okay.
At Cliff Medicine.
Follow him.
He has like three followers.
We need to do better than that.
Visit our website at Dr. Steve.com for podcast, medical news and stuff you can go or buy.
Or go to our merchandise store at Cafe Press.
com slash weird medicine.
Most importantly, we are not your medical providers.
Take everything here with the grain of salt.
Don't act on anything you hear on this show without talking over with your doctor,
nurse practitioner, physician, physician, assistant, pharmacist, chiropractor, acupunctures, yoga master, physical therapist, singer, songwriter, clinical laboratory scientist, registered dietitian or whatever.
All right, very good.
So, Cliff, glad to have you here.
Thank you.
What we're going to do at the beginning of the show that's going to last about 50 minutes is
do a pre-recorded
interview we did with
Gunner Asiason
and there's a whole reason why Dave's here
and it's all explained in the clip.
Let's just go to the clip here in a second
but first
don't forget stuff.doctrsteve.com
for all your shopping needs.
If you didn't get that thing
that you wanted for
Hanukkah or Christmas,
Kwanza, boxing day, whatever,
go to stuff.com or festivus.
And you can
can just click through to Amazon and get it.
Of course, you know they have everything.
Or you can scroll down on that page, and it has things that we've talked about on
this show, the Navage, which is the motorized Nettipot, one of the greatest inventions
of all time.
It's got different supplements that we have data behind that are actually effective for
whatever things that they're indicated for.
So check out stuff.
dot dr steve.com
if you want the best
earbuds on the market for
the price go to tweaked
audio.com and use offer code fluid
you get 33% off
there's nobody gives 33%
off anything on the internet
sometimes you get 5% or 15%
33% off
so if you buy a
$60 thing
then it'll be $40
which is awesome.
Pretty good. Or you buy three of the same
thing you only pay for two of them.
So go to tweakedaadio.com, offer code fluid, best customer service in the business, too.
If you want to lose weight with me and get to your ideal body weight finally for the first time since college, go to noom.
Dottersteve.com.
You sign up and you can do two weeks for free.
And then if you decide to stick with it, it's just a three-month program.
Not like wave watchers, no points, none of that.
It's not a diet either.
It's a psychology program.
You get 20% off.
do decide to sign up.
Noom.
dot Dr. Steve.com.
It's N-O-O-M dot Dr. Steve.com.
And if you're lazy like I am
and you want to know how many calories
you're putting in your gaping maw
at least three days a week,
I use freshly.
dot Dr.steve.com.
Cliff, back when you were with us before,
I think we were doing Blue Apron,
which was awesome.
I love Blue Apron.
They may come back and be an advertiser someday.
Blue Apron was cool
because they send you just what you need
to make whatever food that you're going to make that night.
So if you need two radishes, they'd send you two radishes.
If you needed an ounce of apple cider vinegar, you got an ounce of apple cider vinegar.
It was awesome.
There was no waste.
But you had to make it yourself.
Then I went to Tara's kitchen where they chop up the stuff for you.
And it was kind of an unwieldy thing.
And I have a way that they could make their business model work, but it came in this giant
crate, insulated crate, bad for, not good for, you know, in the environment and stuff.
And, of course, you'd send it back to them, but then there's all the gas and, you know, the carbon
that you're burning, getting this stupid refrigerator back and forth.
And it had little things in it, a little drawers, and it would have the two radishes already
cut up.
So it was nice because you'd pull out the drawers, dump them in the pot, and make your stuff.
So I like that.
But it was a little cumbersome.
If they just did vacuum-sealed baggies, it would be so much better and then recycle the baggies.
But anyway, that's Tara's Kitchen.
Well, I progressed from making it myself to letting them prep it to now I just let them make it for me.
And so I go to freshly.
Dottersteve.com and they deliver fresh prepared meals that make eating right super easy.
You can use my link to get $6 dinners for $39 for two weeks.
It's $20 off each week.
You give it a try.
If you don't like it, you just can't.
excellent. But I've had some good reports on that. It's microwave. So it's going to be microwave food, but it's, you know, a lot more food than you get, say, with a lean cuisine. And it is hand prepared. It's not made in a factory and, you know, by robots. So freshly.com. If you try it, let me know. If you want archives of this show, why would you, after this seven-minute, you know, advertisement? Go to premium.com.com for buck 99. You can get archives of the show going on. Use the app.
the App Store or Google Play, but you can also go to our website, you can get a thumb drive
of all of these shows, too.
That's cool.
And so that's on there.
It's like 30 bucks, and that's 25 for a 32 gig thumb drive, and it's only half full.
So you can partition it and use it, you know, on your thing.
And then that's shipping.
And then the last thing is Dr. Scott's website, last but not least, simply herbals.
dot net the home of dr scott's simply herbal's nasal rinse which are you do you have it in stock
now it is back in stock we're going to put it back on the um on the website on monday
awesome greatest stuff in the world so yeah we did a whole thing last time about peppermint oil
and it's uh and the inflammatory properties and that kind of stuff so it's pretty neat there is
some data on that so all right very good uh so let's go
go to our interview with Gunner Asiason, and then we'll be back at the end of that.
Gunner is a 28-year-old person living with cystic fibrosis.
He graduated from Boston College with a bachelor's degree in 2013.
Now, we're going to talk in a minute.
That was very unusual when I went through training, and I went through training.
And I went through training in the early 80s, and to have a 28-year-old graduate from college who had cystic fibrosis
was not something we saw every day.
Gunner works tirelessly as Director of Patient Outreach and Board Member of the Boomer
Asiason Foundation, a nonprofit organization, his parents founded upon learning of a cystic fibrosis
diagnosis.
And Gunner, welcome to the show.
Thanks, Dr. Steve.
Thanks for having me.
Yeah, thanks, man.
when you and I
first started talking, I had no idea
Boomer Asiason was your dad
and I don't know if you
are aware of this, but
your dad and Anthony
Cumeo, except of the Opian
Anthony show, apparently
got in a fight in the fifth grade
and Anthony
tried to hit your dad in the head
in that big noggin of his
and broke his wrist.
Yeah, I mean, honestly, it sounds
like a story that I've heard
quite a few of my dad's short. It sounds like one of them.
That's so funny. But anyway, Gunner's currently pursuing
a Master's of Business at Dartmouth. Oh, okay. Well, I know Dartmouth. I used to live in
Springfield, Vermont, if you know where that is. Oh, yeah. Yeah, I work in.
Yeah, it's not that far. Yeah, it's not that far. I used to send all of my
acute patients that couldn't be kept at our hospital at Springfield up to
Dartmouth Medical Center.
So Gutter is big on people living with chronic illnesses to feel empowered to advocate for themselves.
And that's really why I wanted to have you on because first I was reading in your Twitter feed about a nightmarish encounter you had with the medical profession.
And I always love to just crap on some of my colleagues from time to time when they do stupid stuff.
And I would crap on myself if I ever did anything stupid.
But, so I wondered if you don't, you know, give us a little bit of background on the cystic fibrosis, but also let's, I want to hear about this story.
And then the reason we've got Dave Ray Cecil here, just to get all the, our cards on table is his daughter is, how old now, Dave?
She's five.
She's five.
And she was found to have cystic fibrosis.
We had a prenatal diagnosis.
Okay.
So, yeah, things have really changed.
Yeah.
Used to be, you know, the kid would be one or two, and we'd figure it.
out so but anyway you know not wrong i mean i was actually misdiagnosed negative word after birth so my
my parents went in the early 90s about two years before actually knowing that i even had CF oh just
thinking that you were a sickly kid i guess yeah that's exactly what happened yeah yeah so talk to people
a little bit about what cystic fibrosis is we'll give them all background so we're all on the same
page yep and then we'll um talk about your insane uh episode that happened and then dave's got some
questions we all have some questions about uh where cystic fibrosis
is going right these days. So go ahead.
Yeah, absolutely. So, again, thanks for having me on.
Yeah, man.
Cystic fibrosis is an inherited condition. It's genetic, meaning, you know, we're all born with
it, those of us who have it. It's, you know, at a very high level, it's a protein dysfunction
disorder that sort of creates a number of diseases to manifest in the body, most primarily
in our lungs where we have thick, sticky mucus that traps bacteria or irritants.
And over time, that sort of just goes in a horrible direction.
And in the old days, you know, you were just talking about it, Steve, where, you know,
kids born with CF, it was really very much a childhood illness.
Yeah.
And we've made some really amazing strides in cystic fibrosis over the past 10 years.
Since we've been involved in the, you know, the charity world, we've raised about $140 million,
our family foundation.
And we've worked strongly alongside the National Cystic Fibrosis.
Fibrosis Foundation here in the U.S., and we've seen within the last 10 years for cystic fibrosis
specific drugs make it from the test tube to the patient, and it's really transformed the nature
of the disease within the recent years here.
Yeah, we were just talking about Tricofta is one of the things.
Yes, tricapta, yep.
And this is a big deal.
It was approved for patients 12 years and older with cystic fibrosis that have that, you know,
508 delta mutation.
You want to talk about it a little bit?
and we'll just kind of, we'll just, I have ADD, so, you know, I see a shiny object and it's like,
ooh, I'm, I'm, yeah, no, we'll jump right in. I was actually a, I was actually a trial participant in a
tri-calf to trial, and in no small way that drug has changed my life. When I, when I graduated from
Boston College 2013, my health was in peril back then. You know, I was very quickly headed towards
end-stage illness, because one of the primary issues that we deal with in CF is actually
antibiotic resistant bacteria in our lungs as I was kind of talking about and over time you know
the access to antibiotics and the efficacy of the antibiotics sort of start to wear on us and for me that's
really what happened in 2013 from you know the five years that I graduated after I graduated college
you know I think I was in and out of the hospital you know every couple months I you know I went I went
through god you know I don't know two dozen medical procedures I spent more than a cumulative year on
antibiotics just to really keep myself stable and then 2018 rolled around and I was invited to be
a trial participant in the track after trial and that drug changed my life in a matter of hours
wow what it does actually yep in a matter of hour so what it does is it it corrects the CFTR
dysfunction at the heart of cystic fibrosis the CFTR is found primarily in our bronchial epithelial
cells which is like our our lungs right as well as other parts of the body to where it's
sort of shows up, but
primarily the lungs and
within hours, the viscosity of my
thick, sticky mucus sort of change.
Get that. Within a matter of days,
my cough went away. And then
a week later, I was
back in for a clinical trial
visit and my PFT, my pulmonary function
test exploded. You know, we don't ever see
that number go up. No. But
mine did that one particular day. And ever
since then, it's sort of, it's just really
changed my life. So were you in this? Okay,
so I'm looking at the FDA approval. It said
The first trial was a 24-week, randomized, double-blind placebo-controlled trial in 403 patients.
So were you in that trial?
So what it was is they were, Vertex was actually in a position to test two sister drugs.
So the one that became Tri-Cafta VX-4-4-5 and then a sister drug VX-659.
I was actually on 659 and the results for the two were actually parallel.
They were the exact same.
The one that was chosen, 445, which became Tri-Cafta, ended up having a little.
little bit of a different side effect profile.
I've since switched to Tri-Cafton, I haven't noticed a difference at all.
Yeah, basically the exact same.
But, yeah, I was one of the initial trial patients in the Tri-Captive program.
Wow, yeah.
It says in each trial, the primary analysis looked at increases in the percent of predicted
forced expatory volume, which is in one second, which is basically for the lay folks
out there that, you know, this is spirometry.
So you blow into this tube as hard as you can, and it's looking at how much can you
you get out in a second. And obviously, if you've got crappy lungs, it'll be less, and you can get
less volume out in a second. And it's an established marker of cystic fibrosis, lung disease
progression. And it increased this in both trials. It increased about 14% from baseline, but
this was just over, you know, a few weeks. So I expect that it probably increased even more
than that over time. So what, what's your PPE-F-E-V-1 now? Do you know?
So I actually don't share that out of concern for medical security, medical privacy.
Totally fine. Totally fine. I'm just good.
But I will say that according to some metrics, I was in the category of severe respiratory illness.
Yeah.
And now I can consider myself to have mild respiratory illness.
Wow.
So that's, you know, pretty significant change.
In the years leading up to Tricavit to the trial, I was, you know, going through maybe three or four procedures,
a year, most notably either bronchoscopies where they go in and they sort of suck out
the mucous and they do biopsies and stuff like that, or a pick line insertion, which is essentially
a long-term IV.
For us, for those listeners, I may not know what that is.
Yeah, tell them.
And, you know, in the one...
You're sticking these kids with these needles just over and over and over again.
They finally came up with a way to do a sort of a central line that's peripheral.
In other words, you stick it in a vein out in the arm, and then it can go into the central
circulation so you can use it long.
exactly and um uh in the in the first year after i dose to tricafta i didn't go through a single
procedure so um you know the the changes in my life have been remarkable and not only my lung
function you know i've um i've gained some weight i've um you know my my clarity in life is great
you know i'm not no longer dealing with the stress of feeling like i'm going to die you know
right um so you know which is why i'm in graduate school now because i can finally look at my
future and expect to have a future yeah yeah science i don't this was allopathic not naturopathic
right dr scott alopathic yeah okay very good i well we'll give ourselves yourself a bill you
never hear me complain about that yeah science no dr scott's not one of those he's a true complimentary
uh a practitioner in that uh you know we we work together very well and he doesn't try to treat cystic fibrosis
with astralogus.
It came out of the lab.
They identified CFTR mutation in 89.
And, you know, now 2019, when it was approved,
30 years of back-wracking research and work to bring CF to where it is now.
So I was, I trained, oh, I went to medical school 82 to 86.
And then I did residency 86 to 89.
And so the gene was just identified at the end of my medical training.
So all of the kids,
saw with CF back then, you know, if, you know, a 16-year-old CF patient, most of those kids were doing
inhaled antibiotics like Tobramycin or genomycin.
And, yeah, this whole business of antibiotic resistance was really a nightmare.
And then they started to develop pancreatitis and things like that.
And Gunner, does it drive you crazy when you see antibiotic abuse out there when people are
demanding antibiotics for viral illnesses that just increase antibiotic resistance in the whole
population. I never thought of that before, but that's got to be something that's sort of enraging
to a CF activist. Yeah, you know, I think that that's like our next crusade. You know, I haven't
cleared my drug resistance pseudomonas remiginosa. It's still in my body. It's really going to
be there for the rest of my life or until we sort of figure out that problem. And,
That's really my next biggest crusade is sort of looking at different technologies across the healthcare industry that are going to be working to tackle the antibiotic resistance problem.
And yes, it does piss me off when I see people abusing antibiotics.
Because quite frankly, you know, I don't have too many left that I can use.
Right.
Yeah.
And, you know, unfortunately, in the world in which you live, the, you know, the market right now just cannot handle a new antibiotic entering.
You know, we've seen two companies this past year go bankrupt.
simply because Big Pharma has left the antibiotic space,
and they've left upon these boutique pharmaceuticals to take on the job.
And, you know, on one hand, we're encouraging antibiotic stewardship.
We're like, you know, don't use antibiotics until you absolutely have to,
yet we're hoping people develop new ones.
It just doesn't work.
Right.
So, you know, we're really reliant on the market to change.
We're reliant on the government to pass the Disarm Act,
which will hopefully stabilize the economic incentives around the antibiotic development.
Well, this is one of those situations where government,
funding would also be appropriate.
You know, when you've got
these things
should not become orphan drugs.
When antibiotics become orphan drugs,
it's ridiculous.
So, but anyway, all right, well that's cool.
Hey, tell us,
Dave has got a bunch of questions
for you because he's, you know,
his daughter's quite a bit behind
you. And the tricapta course isn't indicated
until she's 12. So she's
got a few years before. And
he's got a nightmare from
something that happened
at Christmas. But tell us the story
where you and I first started talking
because I think you were on Twitter
and I went, dude, you know, you've got to come on
my show and tell this story because like I said,
I love to crap on my colleagues when they really screw
up. But anyway, what happened?
So I was a
sophomore at Boston College when this happened.
And like most
people with cystic fibrosis, when we go off to college,
we established managed
care, meaning we contact
the local cystic fibrosis center. I'm from New York
originally. And we have our
CF doctor communicate to the
local doctor on the ground and you know
sort of establish a like
sort of an emergency scenario. Like if something happens, what's the patient
do? And it was cold and flu season and I developed some
sort of flu like virus.
So I, you know, I followed my established
plan to the cystic fibrosis clinic that I was going to. I won't name the
hospital because this ended up becoming a lowering situation. I don't want to
throw anywhere in a bus. No, I get it. I get it.
But I
so I ended up being admitted to this particular hospital through the emergency room as our
sort of plan was established.
And I mean, I had every classic flu symptom.
I had, you know, coughing.
I had throwing up.
I had high fever.
I think I had like 102 fever sore throat, the whole thing.
It was just, it was terrible.
And, you know, it's one thing for someone in the general population to come down with the flu.
It's another thing entirely for someone living with a respiratory illness to get the flu.
Yes, exactly.
Um, you know, as you can probably hear my voice, I'm actually just getting over cold now, but I, um, this particular time I was, you know, I was really, really sick. And, uh, so I was admitted to the inpatient unit. I don't think my, um, my CF doctor had maybe popped in quickly to see me and check on me and sort of start medication treatment. Um, but this, this, this medical center is a massive teaching hospital in Boston. It's, it's one of the bigger ones. Um, yeah, that sort of narrows it down.
Yeah, so I mean, I'm sure you can imagine which one it was.
It was associated with an Ivy League school that starts with an age.
And, you know, I think, you know, I think it was, I don't know, maybe my first night there, my mom had just gotten there.
And in comes like a, what I remember to be the chief resident on my case, the senior resident.
And as anyone who's ever been in a teaching hospital would know, they're sort of like a rotating carousel of like nursing students, medical students.
of residents of fellows i mean everyone wants to come see like the sick person and like sort of like
you know give their two cents right um and that was me you know i became like subject one of like
whatever was happening to me and um this this this resident came in and um along with like a
you know a number of like little followers you know everyone in a white coat and uh they started like
you know examining me and on my arms they noticed that uh i have a bunch of scar tissue from the pick
lines that we were talking about. So when I get a pick line placed, not only do they, you know,
stick me with, you know, the catheter, they also stitch them in because I was young, I used to
live to play sports and I've had one or two of them fall out. So I've always got them stitched in
as I got older. So they immediately assume your IV drug abuse or heroin use you. So the,
the senior resident on the case, like, brings her people back and starts to like consult with them.
And out loud, she was like, well, I think this guy.
is actually a drug user. I think, you know, he probably doesn't have the flu. You know,
the flu test is going to come back negative. He's violently shaking. He's, you know, he looks like
he's sweating. They thought you were going through with his, yeah, DTs. Yes, they thought I was
going through with trawls. And I, you know, I was so unbelievably sick when this was happening.
I just remember being like totally flabbergasted. And, you know, to paint, you know, a better picture
here, a lot of us with cystic fibrosis were exposed to years of medical trauma. So we all
develop what I call procedural anxiety in the sense that, you know, when we're in the presence
of, you know, care providers in a very unfamiliar situation where I was, you know, admitted
for the emergency room for a hospital that I had never been to, I was panicked. You know,
I was, yep, I probably was shaking. And I guess what? I also had a 102 fever. You know, I was feeling
like shit. And that's the one thing, by the way, that would tell you this is not opioid withdrawal.
Because you have all those symptoms that you mention, but you don't have a feeling.
favor with that anyway especially in flu season i mean come on i know it was and it's like it's very well
established that i have cystic fibrosis like if you type in cystic fibrosis into google like you know
there's no there's no secret that i have cf right and like especially the cystic fibrosis clinic like
you know i was patient there's they knew who i was and my and my mom was just like totally dumbfounded
that they actually said that about me in a in a teaching hospital a setting sure that was like
supposed to be about, you know, enriching education about doctors, you know, things like that.
And it was just one of the most ridiculous things that I think we'd ever both been a part of.
And I remember, like, looking over to my mom and just being like, mom, like, can we go home?
Like, I don't want to be here anymore.
This is not what I want to do.
And my mom, you know, finally asked all the residents, like, just get out of the room.
Like, we don't want you here, just leave.
Come back when you have cystic fibrosis doctor or someone who's actually paid to do this.
Right.
Come look at us, you know?
Right.
So the next day, the cystic fibrosis doctor came in with that woman in tow, and he gave her, like, a life lesson right in front of us.
I mean, it was like, it was a beat down among beat downs.
Okay.
Did they bring the students in, too, because they were the ones that really needed to get that lesson as well.
No, it was, it was just this woman.
And, you know, the doctor was like, you know, this person has cystic fibrosis.
Like, if, you know, he's not giving the care that he needs, like this virus could, you know, spell doom for.
him. This is a very serious thing. And I think what the doctor was doing was he was really showing
us what it meant to be in a power patient, right? He was showing us why it was so important that we
spoke up. Yes. You know, that was really what it came down to. And for me, it was a learning lesson
because whenever I go inpatient, right, or if I'm ever dealing with a new doctor or new care
provider, for me, it was the first time that I had ever witnessed a very serious mistake. And we know
in the United States that medical error and medical mistakes are one of the leading causes
of death and injury in the U.S.
Well, it depends on how you define error, but yes,
I mean, I know what you're talking about.
Oh, sorry, that was my
Amazon Alexa going on.
Someone is at the front door.
Okay, hang on. I'll turn her off. Go ahead.
Sorry, sorry.
You know, and I, for me,
it was really a moment that painted a picture about
yeah, these things actually happen.
Yeah.
To the point where whenever I go inpatient
or I'm dealing with a new doctor,
I make sure that I have someone with you who can watch
what's going on. I educate them to the fact about
what I'm going through, what I should expect from a visit and things like that.
My mom, who's gone through, you know, at that point, 20 years of CF living with me, she knew
exactly what was going on.
Yeah.
You know, I kind of look at myself when I'm in a, in a medical setting where, you know,
I have almost, you know, 30 years of experience inside the health care system in the U.S.
Sure.
You know, like I know exactly what I'm talking about.
Yeah.
Now, I can go in and I can talk about microbiology.
I can talk about CFTR expressing in different parts of the body and I know all these things.
And in fact, to this day, I still.
actually test doctors when I first meet you know so I had a one of the really fun things about
CF is that we're at an increased risk of colorectal cancers we get colonoscopy is really young
in life so I had my first one I'm 28 I finally had one over the summer it was super fun and I remember
when I met doctor who was going to perform the colonoscopy I was like I just started asking
I was like well what do you think about you know we didn't call it tri-cafta back then I said well
what do you think about VX 445 expressing my colon's like what do you think about this?
You asked this to a gastroenterologist?
Yeah, so because I wanted to see what he was going to say.
I wanted to see if he was going to bullshit me or not.
Yeah.
And he gave me a good answer, an acceptable answer.
I was like, all right, cool, let's go do this.
You know, that's kind of like the little test that I now give doctors.
I'm ready to speak your language if I have to.
There are absolutely providers out there that that really turns them off when a patient comes in,
spout and jargon, and they know more about this stuff than they do.
And then there are other ones who are like, oh, you know, yeah, you've got a chronic
illness you need to know this stuff and those are the ones you want to that you want to see when
you've got something like what you've got i mean you know someone's going to health care industry is
like a service industry right and i'm the paying customer exactly if the guy's not going to give me an
acceptable answer then you know what's he'll later yeah would would an acceptable answer to you
be hey i'm you know i'm not an expert on that but i could be in 15 minutes if i go google it
you know yeah it's not that hard to access to british medical journal you know like i can also
access it myself yeah yeah yeah yeah yeah exactly
Exactly. Okay, cool.
Well, Dave, do you want to tell your story at all?
I mean, your wife doesn't listen to this show, so.
No, no, no.
No, we just had a flu scare, and, you know, I'm sort of the asshole of the family because my daughter is...
You were not being an asshole.
No, no, no, I mean, I'm just talking about in general.
Oh, in general.
I mean, my daughter is an impeccable health, and the reason why is because we follow the procedure of how to take care of.
the CF challenge to the, we don't veer off of that path at all.
And so, you know, my wife, there was somebody had the flu in a house, and we were going to
all conjure in one place.
And I'm like, no, no, no, no, no, we're not, we're not going to do that.
And my wife has a lot of, you know, she wanted to do it and, and ended up, you know, I was
like, okay, man, and, you know, one of the kids who they actually played with who didn't
have the flu, lived in the house of the person who did have the flu, started.
developing symptoms after after the day after she now ran a fever and my wife was devastated now
that actually served my wife in a way because whatever was there blinding her vision from seeing
went away the scales very very very from her eyes yeah I mean as far as the um we we we were at
another hospital and and she was born in the NICU and so we we sort of went from Brenner we went
from another hospital to the Chapel Hill.
And the reason why is because of similar things that you expressed about, you know, I can, I'm really sensitive and I can tell when someone is, that the lead doctor, you know, we didn't get along and my life gets all uncomfortable, you know, when something happens because I will get in somebody's face and really, you know, so, but what I found was is that she would react to her.
her previous experience in the beginning of my sentence.
And before I could finish my sentence, she would already have an answer for it.
And so I don't vibe with that.
You're talking about the doctor.
That's right, the lead doctor.
And I don't vibe with that.
And I said, listen, you're not listening to what I'm saying.
You're breaking off into telling me, you know, all these things that that's not where
I'm coming from.
You're thinking of the next thing you're going to say.
That's right.
And so from that, it led us to, you know, doing some.
research and moving our daughter and so
we moved her to Chapel Hill
and it's just been
it's fantastic you got to be an actor the doctor there man
is able to say
you know I don't know and that's what
I want to hear is because I want
to because we are a team
and we have to move like that and sometimes
I don't know and sometimes they don't know I think
it's okay for a provider to say I don't know
it's not okay yeah it's not okay for them to bullshit
yeah but it's okay to say I don't know
but go find out
Yeah, yeah, yeah, yeah.
I've got a lot of my colleagues that just don't want to ever admit that they don't know something.
It's like, you can't know everything, but you can find out.
Yeah, we have up-date.
And we have friends.
We have friends that know things.
Yeah.
That's absolutely true, especially in cystic fibrosis.
Like, every doctor knows every other doctor.
You know, there's only, you know, however many cystic fibrosis clinics in the country, you know,
and I remember when I was talking about how sick I was after I graduated from B.C., and, you know, there was one day when I was just talking to my doctor about it.
And she was like, you know, Gunner, I don't have an answer.
for what's happening to, I've already reached out to three of my colleagues for our specialist
in the infectious disease world, and we're going to figure it out. I just don't have the answer
for you right here today. Yeah. And sometimes you think and think and think. I can tell you this
from recent experience. I have a, well, let's just say a really challenging patient that we did
this test and that test. And then I'm brushing my teeth one day and I had a eureka moment. And I said,
I know what it is. And I went and pulled some, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um,
corroborating data off of, you know, the National Library of Science, plopped it in front
of her, I said, this is it, this is it, and, you know, these things happen, and if you were
collaboratively with your patients, rather than being paternalistic, so we're kind of getting
out of the, just the CF stuff, but just no, no, no, just talking about paternalism.
I'm talking to the medical students and nurses and doctors and PAs and P's that listen
to this show, and there are quite a few of them.
We've got to be careful not to fall.
into that.
You're absolutely right.
I mean, we call that movement the empowered patient movement, right?
An e-patient movement.
It's happening, you know, around us.
And I think, you know, the healthcare industry is changing in so many ways.
But this one way in particular is, you know, the way it's happening.
The era of information in which we live, you know, I'm not advocating for people to go out
and, you know, Google their symptoms.
Right.
You definitely don't do that.
But if you can have an informed conversation with your providers, that will pay dividends
down the road, you know, enormously.
Chronic pain patients in the same boat.
Yeah, too.
Well, in some way, what you're also talking about is the person taking responsibility for their own health.
Because that right there is that can, you can grow, and my man, I'll have to say it.
My mom is like, has, whenever she gets anything, she goes and gets a damn Z-pack.
Yeah.
And she just wants that, she wants to believe that pill is going to be the thing that gets it.
And it's like, so she doesn't take responsibility for her own, you know, watching her body and seeing what it's, what's happening with it and how it's
communicating with you in order to treat whatever it has.
And, Connor, I know you don't listen to the show, but we like to talk about philosophy
of medicine on the show, too.
And when I was in medical school, we watched this video of this guy in the mountains
of some third world country, and he was waving palm fronds over these patients.
Now, obviously, he wasn't giving them any medicine.
They'd come to him sick.
He'd wave the palm fronds, and then they'd go away feeling better.
And Scott and I know that if we don't do anything, 90% of our patients would get better.
And when you give, so those patients just wanted to be recognized, they wanted their problem recognized, a name given to it, and something done.
So when we give someone a Z-PAC for a viral illness where it will do no good, that's exactly the same function in society as waving palm fronds over somebody in a third world mountain country, you know, because it's really doing nothing.
It's just making people feeling like you're identifying.
doing something you're recognizing their problem now um one other thing gunner that i wanted to talk about
just for a second is this whole thing about influenza because uh your your issue involved influenza
dave's issue involved influenza and uh we had at least one listener of this show uh that was a contributor
of this show die from influenza and another one uh richard david smith who is the uh the owner of hyperphysics
he makes uh energy drinks with his wife shatai anyway
A little plug for them, hyperphysics.com, I guess.
He almost died from influenza, and people will minimize that.
It was like, what happened with Dave's family?
Oh, it's just influenza.
It's just flu.
It's no big deal.
And that no big deal virus killed 1% of the world's population in 1918.
And that's unlikely to happen again because of Tammy flu and other stuff.
But people who are at risk really suffer when people don't get the.
their flu shots or they're careless about who they're transmitting the virus to.
So, you know, think of Gunner if nobody else.
You know, think of Dave's daughter.
You're absolutely right.
You know, I think that, you know, when you're, when you go to get the flu shot, not only
you're protecting yourself, you're protecting those of us who, you know, can't get the flu.
You know, like the flu just cannot enter my life.
You know, I actually know two people with cystic fibrosis right now who have the flu,
and they're in the step down ICU, right?
That is a very serious thing.
And for me, before I came to Dartmouth, I used to coach high school ice hockey,
and I would actually have a standing Tamiflu prescription.
I know you're not supposed to do that, but I, you know, those of us with CF, you know,
that's a common thing for us to have.
And when I, you know, I remember there were two particular instances I coach hockey for six years
because, you know, I just loved it.
In two particular instances, I had one, you know, one student have the flu.
the one year and then I had no student to have a flu, you know, three or four years later.
Sure.
And as soon as that happens, as soon as I'm exposed, you know, I start the proactive Tamiflu
dosing and to start doing it because, you know, while the flu shot is my best line of defense
in it, and in those two cases, it obviously worked, you know, you can't be 100% sure
that, you know, I'm not going to be developing some symptoms.
And, you know, I think specifically about people who are, who have gone through organ
transplants, you know, who have gone through, you know, really extensive chemotherapy.
And I think about those people, you're not getting a flu shot.
Yep, yep.
No, absolutely.
Get your flu shots, people.
Come on.
Yeah.
You know, Jesus.
I was going to ask you another thing.
Well, let's talk a little bit about your, oh, let's talk about the future.
So what do you, you're plugged into this.
What are we looking forward to?
What's Dave's daughter?
What can she look forward to as far as advances beyond the tri-cafta right now?
So, you know, I think that, um,
You know, eventually what's going to happen is, you know, Tri-Capt, it just, it's efficacy alone, speaks for itself.
It's going to, it'll be approved for younger patients.
And our hope is that for patients who can start on Tri-Cafth at a very young age, you know, they will not know cystic fibrosis like I knew cystic fibrosis or like, you know, cystic fibrosis.
It's going to be a very, very different condition.
For all intents and purposes, if you're, you know, you're starting tri-caft at a very young age
or some of the previous CFTUR modulators, there's previous iterations that aren't quite as good
as tri-cafid but still very good, you know, the disease is not going to manifest nearly as severely.
Right. But my fear in that, however, is that while our children with cystic fibrosis
are going to be perfectly, not necessarily perfectly fine, but very, very well off.
Yeah. I'm worried that the adults are going to be forgotten, right? Because although, yes,
I've started Tri-Cafth and it's changed my life.
I still deal with the chronic pseudomonas.
I still deal with bronchicicest in my lungs.
I still have infertility.
I still have pancreatic insufficiency.
Those things are not going away.
Yeah.
Because I started Tri-Cath in my late 20s.
The damage was already done.
Yes, after fibrosis is already sort of manifested in a number of different organs.
Yeah.
You know, I think that we have to remember the adult CF patients
and we have to continue to pursue a stabilization of the antibiotic market as well as, you know,
working on other parts of the disease.
You know, I still have to do my treatments.
I still got to do the vest.
But, you know, my life is, it looks pretty good.
You know, I went skiing this morning.
I'm playing hockey tonight.
Like, things are good for me.
Yeah.
But that's not the same for every other ZF patient.
You know, everyone still needs help, especially the older generation.
The younger generation, however, you know, I foresee very long normal lives for people with CF
that are, you know, I've said this.
You know, I've said this already that, you know, we've already seen the beginning of the
generation of people with CF who are born with CF.
who will not die of CF.
Right.
You know, that's already, those people are already alive.
Well, it's like HIV.
When I was in training, if you were, we didn't diagnose HIV because no one knew it was a virus.
You know, they had all these other theories about what it was.
Matter of fact, I had a immunologist tell me there's no way that AIDS is caused by a virus.
That's just stupid.
You know, you called us all stupid if we had that opinion.
And, of course, he was proven wrong.
But now, really, for a large number of people, the vast majority, if they can get the medication, it becomes a chronic illness.
And, you know, I've got someone that's very close to me that's HIV positive, and I expect him to live a normal lifespan at this point.
So that's what we're going for.
For Dave's daughter, are there clinical trials going on of this Tricafta where he could maybe enroll, you know, apply to be enrolled to get.
started earlier with this stuff yeah so i you know i think i'm not sure exactly how they're how they're
doing the age brackets i think the next sort of uh level is six and up okay the fda is you know obviously
for the right reasons you know they they scrutinize you know younger ages you know they don't want to
be giving kids absolutely you know just you know crazy medications for no reason you know so i think
um you know while tricraft is definitely a safe option for a lot of people um you know i think the
fta will look very closely um and as will vertex the the manufacturer of
Tri-Cafta before, you know, dosing younger and younger and younger generations, as they have shown to
do in the past with previous iterations of CFTR modulators.
I will say real quick, Dr. Steve, though, that Tri-Cafta is only appropriate for about 90% of cystic
fibrosis patients based on our genetic profiles.
You know, we all inherit two recessive genes from our mommies and daddies.
And, you know, what happens is that there's different, there's about 1,200 different cystic
fibrosis mutations.
Any two pairs can create CF.
Right.
There's a very small, small minority of people living with cystic fibrosis
whose genetic profile doesn't actually create CFDR protein.
So their cystic fibrosis manifest because they're missing this protein that everyone else has.
While mine is dysfunctional, this group of people, they don't have it at all.
So there's nothing to correct.
So those folks still have very classic textbook cystic fibrosis.
And, you know, they're waiting for their breakthrough drugs.
So if you can imagine, you know, the emotions that.
that those folks are going through right now to see, you know, everyone with cystic fibrosis
get better except then, right?
That is a very horrendous situation to be in.
And, you know, unfortunately, the medications that we've targeted for so many years just
aren't appropriate for them.
So we're still, we still have a number of different, you know, things that are coming
through the pipeline where we're looking at different MRI medications, different
anti-inflammatories is actually an endocaninoid that is entering phase two and phase
three trials and then of course the yeah and then of course i guess vermont's across the border from me
right i'm old enough to say that it's not childhood disease anymore right right and i i do think that
the future for cystic fibrosis is bright um and and as i said in my uh i delivered the commencement
address at st louis university school of medicine this past may and as i said to the graduating
class i was like you know we have this antibiotic crisis that's in front of us and unless we figure that
out, it's going to undermine every single advance that we make henceforth.
It's true.
Yeah, we can lose the war against the bacteria.
They outnumber us trillions to one.
So, yeah.
Yeah, that's one of my things is antibiotic stewardship, too.
And, you know, on this, the 10% of folks that don't have that 508 delta mutation,
I'm guessing that one of the.
answers is going to be genetic manipulation or gene editing.
And that's, we are ways away from that.
Yeah, I mean, we're still looking at, you know, a decade plus before we get
a person with cystic fibrosis into even a clinical trial.
Yeah.
In that case, you know, I think it's actually, you're talking about the CF gene
being identified in 1989.
There was always back then, you know, I was a child back then, but there was a rush to,
like, gene therapy back then.
And a person with cystic fibrosis actually did go through some, like, wacky gene therapy
trial and it really screwed them up so you know i think heat therapy is like a like a little bit of a
taboo subject in cf just because it's a classic genetic disease that everyone learns about right
um it was one of the first you know genetically identified conditions and back then it was you know
it was basically like uh pseudoscience that went in to try to fix this fix this poor guy and you know
just didn't work yeah i'm i'm guessing what they'll do is when they identify it uh in utero is
they'll have a virus that can go in and, you know, just add the, the proper gene to that person's genome and be done with it.
But, yeah, we're a bit away from the time when we can inject, you know, embryos in the womb with stuff and edit their genome.
But that's got to be the answer for a lot of this stuff down the road.
Yeah, and I think that and as well as this MRNA therapy that we're looking at, so what they're trying to do is they're trying to actually.
correct CFTR before it's even created, right?
So, MRNA for your, for your listeners, you may not know.
It basically is a message that goes to different parts of the body, and it tells the body
what to do.
So all of us, we, you know, our body, like, just be based on our genetic mutations, creates
the wrong kind of CFTR.
So they're hoping that people can actually inhale MRNA and it'll actually then start
creating the correct CFTR.
That's interesting.
So, yeah, for, you.
People who are listening may have learned about MRNA when they were in high school.
You know, it carries the message from the DNA to transcription RNA where you're making protein.
So I'm assuming that they're going to be bringing this MRNA already tagged with the correct gene.
And that goes in and hits the transcription mechanism, which is unethhing believable, by the way.
Google ribosomes and Google transcription RNA.
And it is, it's this crazy machine that builds protein.
and you know it's just mindlessly doing it it's just there it's just molecular chemistry
but it's incredibly complex but yeah they'll get it bring it already tagged in with the right
message and then it'll make the right that's genius so if you're so if your listeners want to
look up a company it's called translate bio they're out of the Boston area as many
biopharmaceuticals are you know they've already done a phase one trial on CF and they
did see some success so they're going to continue going that route and it's you know
But that science to me is unbelievable.
Like the tri-caf is a pill.
It's freaking amazing.
Right.
But inhaling MRI just like blows my mind.
Me too.
That's a great idea.
I'm going to buy stock in that company as soon as we get off of this.
Well, yeah.
I mean, you want to talk, you want to talk, you know, dollars and cents here.
Like, whoever can patent an MRI therapy first is going to be a very lucrative company.
Yeah.
Yeah.
And, you know, you don't hear about this like you do with chemotherapy.
Oh, well, the medical profession already has a cure for CF, but they're just repressing it.
You know, I hear that all the time.
I work at the cancer.
Oh, my God.
And it's like I tell people that I, if we were really repressing the answer and it was that easy, I would give, I would be the first one to give it out to everybody and break this cabal of, you know, this cone of silence just for the blow jobs.
Yeah.
Yeah.
I mean, I mean, like, whenever I hear that, I'm like, well, what about Heppetency?
We've cured that.
Yes.
Like, there's no money in that cure.
Yeah.
Of course.
Yeah, it's been cured.
you know like you know these things are these things are financially stable literally cured those
people take the treatment and then they don't have to take it anymore and it's gone so yeah yeah it's
coming so uh gunner we're we're running out of time what can people do to help so like i said
the adult cystic fibrosis population still needs uh you know serious funding for for research
and things like that as and as those are our notion of antibiotic resistance across the entire
health care industry. So you can either check out the National Cystic Fibrosis Foundation or
our family's foundation at Ascius.org, e-S-I-A-S-O-N.org. You can follow my blog, Gunner
Asi-Syacin. I'm also on Twitter. Like, you found me, Dr. Steve G-17 Asiason. And if you
want to see me skiing up here in the Upper Valley around Dartmouth, you can follow me on
Instagram, too.
Okay, cool. Let me, your foundation, the CF Foundation, tell us the name of the actual
foundation. So the Boomer Seison
Foundation. Exactly.
This is my issue. So your dad
has a kid and
the kid has CF, but he starts
this foundation, but names it after himself.
He is famous.
I got no problem. I got
no problem with it. You know, it was name
recognition back in the day. Like, I'd rather people know
about CF through that
than, you know, then not
know about CF at all.
Right. A lot more people. A lot more people know
Boomer Sison because he was a hell of a quarterback.
Well, that is true.
He's a hell of a player.
Just to give you a little context, Gunner, I wanted to see if I asked Alexa who you were, if they knew who you were.
So listen to Alexa's answer.
Echo, who is Gunner Asiason?
Norman Julius Boomer Asiason is an American retired football quarterback and former network color commentator.
I'll tell you what, it's better if you do that, that if you Google, you know, is Gunner Assison,
the Google auto answer is
is Gunner Asiason still alive.
Oh, no. Oh, no. That's what you get when you Google
is Gunner Asiason. So we're making progress.
That's what I see. All right. Well, let's try this.
Echo, who is Boomer Assison's son?
Here's something I found on Wikipedia.
Norman Julius Boomer Asiason is a retired American football
quarterback and former network color commentator.
Does that answer your question?
No, but thank you very much
So, yeah, so I guess
Actually, it does make sense
to name it the Boomer's Highison Foundation
just for that name recognition
But anyway, well, listen, man, all the best
If you, if anything new comes out,
please come back on the show.
Dave, you got any other questions for Gunner
before we let him go?
We got four minutes.
No, but I really would like to like to thank you.
I mean, a lot of the movements that you've made
and cystic fibrosis obviously will affect and do affect my daughter.
So I had to say that, man.
I really appreciate it.
Yeah, thank you.
We're all in it together, right?
Every single one of us living with cystic fibrosis and within the larger and broader
rare disease community, you know, we're all in this together until the very end.
And I know for a fact that your daughter will live a long, full life, not in spite of cystic
fibrosis, but with cystic fibrosis in the passenger seat because it's not going to be
the same kind of condition that we'll live.
all of us have had for so long.
Thank you, that's awesome.
That's awesome.
Yeah, thank you for your work on this.
And we always, you know, worry about Dave's daughter because Dave's real special to us.
And, you know, because of the fact that he has this experience with CF, he would be a perfect person to have it a fundraiser to play music.
He's quite the talented singer's song.
Oh, he's awesome.
I'm just giving awesome.
I'll get some of your contact and fall off the air.
Please do.
He is fabulous, yeah.
Yeah, yeah.
That would be awesome because he wants to do anything he can to help.
And that would be a nice synergy there.
Anyway, Gunner, thanks again, man.
Everybody check out the www.
www. usyerson.org or learn about Gunner at his website,
www.gunnerosyerson.com.
Gunner Osyerson, CF advocate and activist.
Thanks for being on the show today.
Absolutely. Thanks for having me, guys.
We'll talk soon.
Hey, take care.
Thanks, man.
See you.
All right.
So, oh, yeah.
Well, look who showed up.
To be fair, I've been sitting outside.
Oh, you have?
Oh.
Why didn't you come in?
I tried.
The front door was locked.
I rang the doorbell.
That was you.
Okay.
So remember Alexis said somebody was at the front door.
And nobody asked.
So who let you in?
Oh, your wife.
Oh, okay.
Eventually.
Eventually.
Did she pull in while you were sitting out there?
You know, honestly, she may have.
I wasn't even, like, after a while.
I was like, well, I guess maybe I should go.
Did you call me?
Okay, yeah.
Text me.
Yeah, if that ever happens again, or call.
It's okay to call.
Because I would have said, oh, here's Cliff, and I would have put you on.
But anyway, Cliff Andrews, everybody.
Hey, Clue.
Dave, you've never met Cliff, have you?
How do you do, so you've seen Cliff's picture, though.
He's all over the place up there.
And Cliff, you've seen Dave's picture.
picture because it's right there over Dave's right
shoulder. Oh, yeah, yeah. Cool.
So anyway, yeah, cool. Yeah, we probably ought to
do another live show somewhere
and we could do music and comedy.
Let's do it. That'd be great. Sounds good.
We're going to flip over
to the podcast side here in a minute, and Dave's
going to do, you're going to do a new song?
I'll play one, when you? Oh, yeah.
Cool.
And you don't
have the chart, so
it'll keep Scott
from trying to play along.
Oh, that's terrible.
Oh, Lord.
That's not very nice.
It is, that's not very nice.
I'm not a nice person.
I keep trying to tell you guys that stuff.
Yeah, that was cool having gone around here.
He was great.
He was great.
Wow.
Yeah.
An awesome advocate for what you're going through.
And, you know, you hear about these things and they don't, so often hit so close to home.
No.
But for you, it couldn't be any closer to home.
People who don't have kids have no idea what worry is.
or at least let me put it this way
I didn't know what worry was until I had kids
and then that's all I did
you know I had nightmares
about horrible things happen to my kids
and stuff and you know
that's up
and then you have a kid
that really has something you've got to worry about
and then it just compounds that
well you know it's interesting
that you're talking about that because I don't have any
I mean
you know I was talking to a lady and she
was she was
inadvertently without her actually
saying that she was telling me,
God, I don't know what I would do if my daughter
had CF. You know, I can
just sense it and she was playing.
Well, they don't know. Yeah, you know, they don't know
what to say. People don't know what to say or
do when there's, you know, either
they perceive a tragedy
or there's somebody that's chronically
ill or severely ill.
They just, you know, they don't have the tools to.
Well, well, what I was, what I
said to her was like, well, you know, it
wouldn't matter if your kid
had see if or not. And she's,
I mean, I said, look, man, you know, I know that it would matter physically.
You would have these things that you would have to take care of, et cetera.
But you're going to do whatever you have to do for your kids.
And you don't run around thinking about how bad things are.
You just do the next thing for your child.
So that's where I was coming from.
So I don't have any kind of, it should be different going on.
You know what I mean?
If I did, then it would be stressful.
This is just what we do
It's just what it is
Yeah, it's just what it is
That whole Baba Ram Dass thing
And people make fun of it
You know, but people make fun of two things
That I think were actually very profound
And one was Rodney King
Saying we all just get along
People shit on him
And he's right
He is right
We just choose not to
That really
I think that was a very
It was so, you know
The most profound things are so simple
It's like you know
Can't we all just get along
It's like, yeah, we can.
We just, we don't want to.
So that's one.
And the other one was, you know, Baba Ram Dass saying, be here now.
And that is something that if nobody, Scott and I do and Dave, and maybe Cliff, but, you know, we've got to be in the moment.
Right.
Or we're not living our life.
And so, you know, if you have, I say this all the time on the show, so people have heard this a thousand times.
but that's my shrink told me this.
Apparently he stole it from AA.
But, you know, he said,
if you have a foot in the past and a foot in the present,
you're in perfect position to shit on the,
I'm sorry, I fucked that up.
The past and future.
A foot in the past and a foot in the future,
you're in a perfect position to shit on your present.
Because that's true.
You're just squatting over it.
You're taking a giant dump on the present.
And I know so many people that worry about what's going to happen,
what are people going to think
when you can't read their mind
who came to shit what people think
or what happened in the past
that you can't change
so you
you might be able to influence
what happens in the future
but it hasn't happened yet
you're here right now
and yeah you're right
so when something like this happens
the most functional approach
is this is the hand we've been dealt
now we've got to play it
yeah and the thing is too
is that you know
when you do live in the moment,
you know, the past and the future sort of fade away
because it's your attention that drives these thought patterns,
you know, like if I'm always constantly thinking about the future,
I get my thought, I have a pattern that I'm going to,
even when I get what I wanted,
because I'm stuck in this mind pattern of, you know,
projecting a future result,
it won't okay well I got that okay and it'll last a little bit and now okay now I got to get
something else yeah you got to do something else yeah you can't ever enjoy anything yeah exactly
I had a friend when I worked in software when I was in medical school and some people who
don't listen to this show avidly might not know I wrote 6502 machine code back in the day to
help put myself through medical school or pay defray some of the expenses but anyway this
guy that I worked with, he was terrified he was going to die. Now, he was probably 26 at the time,
already worried about dying. And so he'd work out. He'd take supplements. He'd do all this stuff.
And I never saw him actually enjoy his life because he was so worried about his life ending that he
didn't enjoy it while he was doing it. That's when you say, man, why don't you just turn around
and talk to death? You know, that's the thing. And we all walk, I was thinking, you know, it'd be cool to have
like a, what if it was a computer program, you just slide the cursor over, somebody
and click them, and a date would come up over there.
Jesus. Expiring at this.
I mean, you know, if you go ahead and it's like, this is the way I look at it.
We all walk with our death.
Everybody here is going to die.
Carlos Castaneda said that.
Are you quoting him or does come from you?
No, no, no.
No, it's coming from me.
Okay.
He said you should always walk with your death, not in a morbid way, but just to remind yourself
to enjoy every minute.
Exactly.
So this is what, so for me, I got.
At early, I don't know, like 10, 15 years, I got obsessed with death, and I was single,
and I had all these little quotes, and I'm posting them all over my house, you know,
little quotes like, um, um, I said to life, I should hear death speak, and life raised her voice
a little louder and said, you hear him now, you know, just kind of these little, these little things,
you know, and yeah, yeah, yeah. So, so, so, but the point is, is that at that point in my life as well,
as I turned around, and because death is walking with us all, but we're all trying to ignore him
and outrun him, get away from him, and shit.
And so I just turned around and said, how are you doing, man?
And based on that respect, you know, now I'm walking side by side with him, he grants me wisdom
because I know at some point he's going to take the lead.
And so I am aware of my death, and I live with my death, but it makes the moment so much more
full because I know that this shit's past.
I'm passing through, man.
Come on, man.
I'm not trying to be, this is not morbid, but this is like accepting it so that you can be released from it.
So that you can see that life and death are one and the same, you know.
Yep.
Welcome to pot talk with Dr. Steve.
Acceptance.
And Dave Cecil.
Is the key.
Hey, and your resident hippie pot head.
That's true.
Thank you very much.
But you don't do that stuff.
Not you, Cliff, of course.
No, I wouldn't do that.
I can't right now.
I'm on the state of Tennessee away.
Oh, yeah.
Yeah.
Well, we've talked about this on the show, too, that which would you rather have, who would you rather employ?
Someone that's using pot on the weekend who two weeks later has a positive drug screen or someone who's all hyped up on cocaine on Monday but has a negative drug screen on Wednesday.
Right.
You know, I'd much rather have the pot head.
Yeah.
Same.
Any day.
But there's no justice.
I mean, there's a lot of things that are unjust in this world,
but that's really one of them is the urine drug screen when it comes to employment.
Anyway, that's just, you know.
For sure.
Okay, we're going to do a song?
You want to do this, too?
Let's do it.
Let me give the outro.
Hey, thanks.
Always go to Dr. Scott.
And Dave Ray Cecil, thank you for coming up today.
I just asked him yesterday, hey, we're having a CF advocate on,
you want to come up
and you know
and jumped at it
yeah he just shows up
and he lives what do you live
three and a half hour
four hours away
yeah only
I got a Prius man
it's a four and a half hour
you're right
totally cool man
thank you for coming
and everyone
should check out Dave's music
go to
like I said
our YouTube channel
and just go to
the
the show that says
Dave's
Cecil and studio, and you don't
have to listen to me droning on because, you know,
I try to do an interview, but I'm no
interview. I ain't no
Ron Bennington, but
you can just click on the links
underneath in the comments, and it just, you can
go straight to the songs.
They're unbelievable. I was
so proud of my engineering
skills that day because I was worried
that what you do wouldn't come
through, and I really feel like it did.
I really feel like it did.
It was a pretty good example of your music.
So, and we were all just freaking out too, so.
Good stuff, Dave.
So, um, now, Cliff, you're going to sing back up on this?
Oh, what?
Okay, he's going to sit back.
If I get the, uh, the spirit in me, I will.
I don't know this.
Now, you play keyboards or something, right?
I mean, I can play chords, but not at the, not at y'all's level.
Y'all are like profession.
No, no, no, that's bullshit.
You should have heard Scott, the, for, matter of fact, we've got to do a show where we play
sweet Melissa
that you did the first time with GVAC
sitting where Dave is
and then play the new one.
Yep.
We're going to make a new one.
I'm practicing my home studio now.
Well, we're going to do a better,
a newer one.
Okay, well, the tracks are all there.
I'm not redoing the music.
It's fine, but you can...
The vocals.
Yeah, you can redo your vocals.
But just to hear that,
and same way, we can
have you in here with a keyboard
and you can plonk some chords down
because it's so fun to be in here
and just watching other people play.
You need to...
That's fair.
Yeah, it's cool.
Okay.
Yeah, we'll do that.
If you're going to be here like you've been, we need to get you involved in that part, too.
So we'll set you up with something.
Let me hear how loud you are.
Make sure I'm not.
Turn mine down, just a hair steep, please.
Okay.
Yeah, then I don't want to be too loud.
Play, just hit a couple things.
Okay, there you go.
Okay.
Yeah.
And then let's get Dave some, just a touch reverb in his voice.
Check one, two, check one, two, check one, two.
Why is that so, okay, give me, say a couple of words.
Check one, check one, two.
There, there is.
There we're going to pop myself down to slow.
All right.
What's this one?
This is a new one?
Yeah.
What's it called?
I don't know what this is called.
Okay.
Do you want to do a contest and let the listeners name it?
Yeah, sure.
It'll be called, you know,
fuckhead McGillicott if you do that, but that's okay.
I'd buy that.
I would totally buy that album.
Get to you, I think.
I don't like that.
I don't think of something.
Holding you under, dragging you down
And like thunder, your heartbeat sound
One minute you're sure to drown
Can't catch your breath, so that's what she does
Sometimes she's like that, sometimes she heals
Your time you'll find out this is the deal
To learn all your lessons, my friend, because
This is what life can do
Yes, I've seen that look on a few
You gotta let go of all you lose
Get used to breaking into
And you can't let these things
get to you
You can't let these things get to you
You can't let these things get to you
Don't let it get to you
Gone are the things that you wanted to
Always do when you were young
replaced by the years of just getting through
it's nothing you have a dreamed of
life is a wonder
passing you by
rolling like thunder
their father time
blink and it's over
you're going to find
this is what life can do
yes I've seen that look on a few
you gotta let go of all you lose
get used to breaking in two
and you can't let these things
get to you
you can't let it get to you
Get to you
We can't let it get to you
Get to you
These things ain't always
What they may see
So don't let these things
Get to you
something like that's dope that's real dope that's beautiful i just wrote that i just wrote that
that's like days old hey yeah yeah three and a half hour drive it's awesome man
good stuff day privilege to be here with you so i had a couple of clams and
there but if we play that again i forgot some words so it's good i was i was playing airman
i have committed i'm going to get better at keyboard i'm going to start practicing
we need a keyboard man i'm gonna do it i'm gonna do it you inspired me your voice is amazing dude