November 23, 2025 • 28 mins
She was given a "use by date" of 12 years old.
In this episode I sit down with Tayla to chat about the reality of living with Cystic Fibrosis. (I had no idea what it really was) We get into the "invisible" struggles that you'd never see just by looking at her, the time her sweat turned into actual salt crystals in her soccer gear (wild), and the groundbreaking drug trial that changed her life right when things were looking their worst.
Plus, we bond over my theory that humans are basically just used cars waiting for a mechanic, and she teaches me that sometimes, a dark sense of humour is the best survival mechanism you can have.
You can support Tayla's fundraising efforts here: https://www.breakasweat.com.au/tayla-purves
And if you enjoy this episode, feel free to leave a comment - or maybe rate the podcast if you haven't done so yet? Thanks heaps!!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
With Rabbit, I'm Rabbit. I record this podcast inside a
cute little retro caravan from 1967 that I've tore around all
over the place. Fan podcast with Rabbit, my
guest for this episode today, her name is Taylor.
I'm not totally sure how we knoweach other.
We've messaged back and forth a bunch of times.
I've promoted some things that you've done with Is it sweat
(00:25):
Timber? It's called Break a sweat for
CF. Break a sweat, OK, When the fact
that I knew that there was one called Sweat Timber, that
happens as well. They're separate.
The CF is cystic fibrosis, whichTaylor has and I know nothing
about, but I know it's always interesting to find out more
about these things. So you have cystic fibrosis?
(00:48):
Is this a thing from birth? Yeah.
So it's genetic. Yeah, I guess I just saw your
face. You just went, how much do I
give here? Because you know everything.
Yeah, And you got to dumb it down for people like me.
So I'm not sure if you ever watched the Five Feet Apart
movie? No Cool.
(01:09):
Well, that's about CF. But what it What is cystic
fibrosis? It's so I what?
Is the statistics on cystic fibrosis.
Well my use by date was 12. What?
I was meant to die at 12. Really.
Yeah, 12 and then 14, and then my lung function dropped to 40%
(01:29):
when I was 16 and I was being put on the wait list through
lung transplant. OK, so it's all it's lungs,
yeah. Right.
So yeah. I hope so.
Otherwise what are they doing? Yeah.
So you were on the list to get lung replacement?
Both. Yeah, double.
So I was being placed on that wait list and then a drug called
(01:49):
track after came along and I gotput on the drug trial at 16,
which wouldn't be here without that, I don't think I.
Think a lot of us trials and drugs around 16.
Yeah, not me, obviously, I just friends that I saw it.
There's something to do with. Why am I trying to explain this?
I was going to say it's something.
It's a mucousy thing of the lungs.
(02:11):
Yeah, there, I said it. Yes, thick mucus.
Yeah, that's great. But yeah, so CF is a respiratory
illness, It's incurable, it's genetic.
You get it from your mum, dad being a carrier of the genes.
So hypothetically, if someone has CF, they'll be able to carry
it on to their children, but if their partner doesn't have the
gene, they won't get it. Oh really?
(02:33):
Yeah, no one else it. Takes 2.
Yeah, mind blowing. Wait, so the mum and the dad
both have to have cystic fibrosis?
No, they both have to have the gene for CF.
Oh, so is it almost a thing then?
Where? Like it sounds horrible and
(02:54):
heartless, but you know where I'm going?
Like you meet someone and you know you carry the gene that you
would get them to. Get tested.
Get. Tested find out if they have the
gene and if they do, if they have kids, the kids will have
cystic fibrosis. Yeah, there's a one in three
chance I think. Right.
(03:15):
So with my family, like mum and dad.
But when did they find out themselves that they carried the
gene? Not until after I was born, so
they didn't. So then the doctors discovered
you have. Yeah, so they did the heel prick
test, which is done at 12 weeks old.
It's where they pricky heal as ababy and they get a blood sample
from that. Oh OK.
And they can do genetic testing.So they do the test and then
(03:38):
they come back with that news and then your parents are told.
Are they told then that it's 12?Years that you've no, no.
So they went to a clinic in Sydney and the doctor that I had
lost a patient that same day andthey waited there all day and
didn't have anyone, like, talk to them or anything.
This doctor later ended up beingan excellent doctor and was the
(03:58):
reason that I was so well to go on track after.
Right. But he basically said you
haven't got the perfect little girl you wanted.
She's gonna die before she's 12.Oh, no.
Oh. That just hit me so hard.
So I think dad grabbed him by the shirt and said what?
Yeah. Oh, what a.
Horrible thing to be told as a parent.
(04:18):
Yeah, so mum and dad like like Istill live at home with them
'cause like chronic health can'twork full time, but they've
always been quite like protective and if I I needed
anything they'd always be that support, which I'm pretty lucky.
For yeah, you're the golden child.
I'm I'm pretty sure you've got anything you wanted your whole
life. Yeah, there's ever been an
excuse to be a spoiled kids. Ohh and when they try and tell
(04:42):
you like just clean your room oranything, you're just like hey,
I'm not even meant to be here. Yes.
I've got a joke where like something will happen.
Like mum almost passed away a couple years ago.
She got really sick and she's like, oh hey, like I almost
died. I was like same.
OK, wow. It's funny in those situations
where, you know, to others that they would go, oh, that's not,
(05:03):
you know, joking about that kindof stuff.
No, we joke about it all the time.
When you are in it and it's yourlife, yeah, you can find some
real dark humour, yeah. And it helps.
It does. Yeah.
I think like, growing up, my friends would be like, you know,
I'd be coughing up a lung. Basically.
They're like, oh, would you cough it up already?
I'm like, I'm trying. Or they'd be like, can you die
quiet? I'm like, I'm trying wow it just
(05:25):
sounds terrible. So the first number they were
given was 12 as in you wouldn't live past 12 years old?
And is that it must be based on stats.
Yeah, I think I've always had like a quite mild case of CF So
it was kind of just like, unfortunately that doctor had a
pretty rough day and kind of just blurted out, you know,
(05:45):
don't expect it to live past 12 kind of thing.
So. Oh, right.
But here I am and. We're at 2323.
Yeah. Isn't that funny?
I always talk about how you never know what anyone's going
through. You look at anyone, you'd have
no idea to look at you. No idea that you have this.
No. That's great.
At all invisible superpowers, basically.
(06:07):
So what does your day look like?Like what's happened today?
Got up head puffers breakfast track after that kind of thing
in the what did you? Say.
I got up and had like my asthma puffers.
But was it breakfast track after?
Track after so I have to have like it's the drug right so yeah
track after I used to have to doairway clearance three times a
day and then when I get sick it'd be like 5 or 6 times a day
(06:27):
depending Don't tell you the. New.
Amazing drug has come along. Yeah, and This is why you do the
fundraisers for all of these things.
Cancer Council all. The sicknesses.
All the sicknesses, all the charities, because it's exactly
for that thing. You raise the money, they can do
more research, and then they find this thing.
Yeah, and they'll find more things.
(06:48):
So. There's a new one called Aleph
Trek that we should get in February.
They're saying which is better than Trek After.
Trek After has its side effects where it's mental health is
quite bad, like you get really bad anxiety and depression.
There's sometime neuropsychological side.
Effects caused by that Mm Hmm what are you hearing about this
new one? Apparently it has better sweat
(07:09):
chloride results. So they do like a they put a
thing on your wrist and they do a sweat test and see how long
'cause we're super sweaters. Fun.
OK, We sweat a lot. Right, that's I gotta go back to
that because it's Sweatimba, although it's not what's yours.
Break a sweat. Break a sweat.
It's a better name. Although I don't mind Sweatemba.
No, it's kind of cool. I mean, it's not as good as like
(07:30):
Rocktober. Yeah.
And Movember and stuff. It's a bit of a stretch with
Sweatemba. Yeah.
What's the sweat tie in? Yeah, so we're, but I was always
called like a super sweater at the CF clinic.
Interesting. Just because I sweated so much.
Really. Yeah.
But are we talking just like underarms?
No. No.
Everywhere. You just sweat.
Yeah. When I like you're out on a hot,
(07:51):
sunny day and you're just a little.
Tradie if they're out in the sun, yeah, yeah.
And you just, you just get like that.
All the time, yeah. So not anymore because the track
after it, right. But when I played soccer, my
soccer shin pads, you pull them off after and it'll be all like
crystallized salt because I was that sweaty.
You lose a lot of salt and you sweat normally.
(08:11):
Does that have anything to do with the lungs?
It's all tied into it kind of thing.
So we see if it affects your lungs, pancreas and bowels.
So because of how thick the mucus is in your body, the mucus
membranes because we're missing a CFTR protein kind of thing and
that's what track after tries tofix.
And that's affecting your respiratory which then affects
(08:32):
the blood. No, just.
My life. Yeah, I mean, you'd know.
But for me it just effects like you're very tired all the time.
You're like you can tell me I get sick for instances like my
under eyes go really dark so of.Course, I'm looking straight at
them right now. They.
Look, all right, they're. All right, you might be on the
way to coming down and say, mindyou, you'd look at me, right?
(08:54):
No, that's just I've had five hours sleep last night.
I'm thinking as you're saying that because you get it when
like if I talk to people about ADHD, right, which I have been
diagnosed with a medicated for it.
And now and whenever I talk to people and they go like what
sort of things? And then I run through things
like, you know, and wildly off, off track, doing 100 things at
(09:15):
once and also not doing anythingat once.
And all these things people go, I think I might have that.
You're sitting there going. I get dark under the eyes.
I get really tired. I'm sitting there going, God, I
should get the the heel prick test now, I reckon.
I reckon you know by now. Yeah, well, some people haven't
been diagnosed until they're 4050.
(09:36):
Sixty even. What?
Yeah. So sometimes there can be really
rare genotypes where they're notknown.
What would they go through life of them being out of breath?
Yeah, sweating a lot. Yeah, so all the CF symptoms,
lots of chest infections, alwayssick.
But not know that it's that, yeah.
So some of them mightn't be thatsick.
I'm in a thing called the CF Hub, so they're probably gonna
(09:57):
watch this. Say hello.
Hey. Hey, Hub.
But one of them wasn't diagnoseduntil later in life.
And she was like, fine. She was always just a bit less
stable than other people. Yeah, 'cause obviously, like,
it's invisible, like disability.Yeah, invisible illness.
So yeah, just looking at someoneyou wouldn't know.
It's a lot of those, though. I mean, not that, yeah, they're
(10:17):
all different and, and different, but mental illness,
yeah, people mask that very well.
There's a lot of invisible illnesses.
And what's interesting is that some people are carrying these
things and don't know that they are.
Yeah, yeah. If you take your car to the
mechanic, they can plug in this device under the dash.
You know about cars? Yeah, Yeah.
(10:38):
They plug it in under the dash and it gives a readout of all
error codes and things to look at.
When are we getting that for us humans?
I don't know. We just walk in and they plug a
thing into US. Yeah.
Or they do a scan or something. And they actually, I did have an
answer on that just recently. Someone, I heard a doctor
talking about that and they weresaying that they could do that.
(11:00):
The problem is you lie down, this thing, you get a scan, they
will tell you, you have arthritis in your knee, You have
this, you have this, you have this.
Because we all do. Like we've all got stuff wrong
with us that we don't know about.
And then you just fixate on it. And there's a thing of just
like, living your life and dealing with the big stuff when
(11:21):
it comes along or if it's affecting your quality of life.
But yeah, it was a thing of justgoing, oh, you, the things you
would find out that are broken in you.
You're like, well, I gotta get that fixed.
Well, there's a point. You've gotta accept that you're
a used vehicle. Yeah.
Push it in the Creek. I'm kidding.
It's, you know, you are not a assoon as you drive it off the car
(11:45):
lot, it's not worth as much and you're gonna get scratches and
Dings and things. You are not gonna keep it in
pristine condition. So glad I've turned this into a
car analogy. So Taylor actually does all the
stuff with. Well, you love F1.
Yeah. And big motorsport girl, Yeah.
Because my daughter don't know from the podcast, she wants to
(12:06):
be a Ferrari F1 engineer workingon the team there in Italy.
That's the goal. Maradelo, yeah.
And she through you, you've put her in touch with a few
different people. And we came up and saw you at a
cart day up in Newcastle. Yeah, that was fun, Yeah.
Yeah, we actually had a really big turn out at Newcastle for
(12:26):
Akci should say the proper name.SB Tools, Australian Cartoon PC,
President of Lancaster. Please get the sponsors names
in. Think of the Mitre Chan have
been big supporters of the pod and podcast right from the start
and you get all the stuff from them that you'd expect to.
You get plants, you get all the Weber stuff, you get all the
steel here, the amazing principal kitchens, but it's the
(12:46):
stuff that you don't expect like.
This lady comes in and she's hired a goat, but to clear some
lands and she wanted to work outa way how to tether this goat.
I come up with an idea of a bit of stainless steel wire between
2 trees, like a zip line betweenthe two trees to the goat.
She took my advice. I don't know how it turned out,
but she was very happy with the service that she got.
(13:07):
That that's what you get. And the mighty helpful King
Cumber Minor. Jen, have you been to Guandalin
Bowling Club? They're right there on the
shores of Lake Macquarie. They do delicious meals upstairs
in the Four Shore Bistro and Cafe which is run by the Dish
Catering Group. So you know it's good stuff and
you can dine out on the balcony looking out over the lake.
It is beautiful. They got the cute little 4 shore
(13:30):
kiosk for a coffee and snacks right by the jetty.
The entertainment's top notch. They got Friday night seafood
raffles and sun they sessions with live music in the beer
garden. You wanna find out what's
happening at the club? Check out their Facebook page or
visit guadalinbowlingclub.com dot AU.
(13:53):
So back to cystic fibrosis, whatis your current use by date?
They turned around to me last clinic appointment and I'm like,
oh, you're going to outlive all the loss.
You're going to be old and wrinkly.
And I'm like what? That was what I wondered.
So you said at the start that it's incurable, but you can live
a full life with it, can you it?Depends how your illness is.
So for me, apparently, yeah. Which is weird because, like, I
(14:15):
haven't planned to live a long life.
I've kind of been. Are you serious?
Yeah. Well, I mean, yeah, it makes.
I never thought about getting married anything like that.
Like I just thought, yeah, I'll be dead by 20.
So but now I'm. 23 so that and laugh.
Sorry, it's. Just so weird.
She's really just sitting there having a good whole laugh about
it. Is there without going morbid
(14:37):
now then though, is there a chance of you'll have one of
these appointments and they'll go, yeah, it's gone bad.
So this year my lung functions dropped 6%.
I caught COVID for the first time in February, which was.
Hey same, I only got it first time this year.
The whole thing with COVID, realbig bad respiratory yeah,
illness. Yeah, so.
Like they were worried about people with asthma.
(14:57):
Oh, yeah, I remember going to school and they were like, oh,
the only people that are gonna die are gonna be like the people
that are already sick. And my whole group just turned
to look at me, and I was like, cheers.
Oh, no. Like, it was a pretty scary
thing. From my point of view.
It was terrifying. I had a lot of panic attacks
with all their, like, respiratorads on TV or, like, really?
Yeah. So I just stopped watching TV
for a while and just listened tothe radio.
(15:18):
Everyone was scared. Not everyone.
Some people were, you know, whatever.
It's just a. Goal.
Yeah, there were. I mean, we went through all so
many different things. There was a point there where
you're just going, is this us forever now?
Like, is this just what happens and this thing's going to mutate
into something else because it kept being different strains and
things like that. I can't even imagine what it
(15:38):
would be like for Someone Like You.
Yeah, going through that. Like, we think we're scared.
I don't want to get it. And being all cautious, like how
cautious did you have to be? I didn't go out to parties, I
didn't go to the shops anymore. I still wear a mask now which
people look at you going what are you wearing a mask for all?
Right, because you, you had COVID for the first time this
(15:59):
year, but you, you could get it again.
Yeah, like basically I was home for a while in year 12.
I missed a lot of school, which luckily like I had a couple
classmates who used to ring me to make sure like I didn't miss
out on any work. Wow.
But I wasn't there for maybe 3 months of year 12, so maybe
even. Later, I was going to say, did
you do HSC? It's like, OK, you're 23, you
(16:21):
probably did. I did.
Didn't do too good, but that's OK.
But well enough, no? I I didn't either they.
Still gave me a like a like an actual number that I got.
Oh yeah. Which I guess.
It's just nice to get something.Yeah, yeah, it.
Was like in the 40s like. Right.
(16:41):
Yeah, I. Was like.
Does that even matter? No.
Here's the weird thing, right, If I was to employ someone now
to come and work at Pod Van Media, there's no way I'd be
asking them. No, even you at 23 years old,
it's not that long ago that you did it.
Even if I was employing a 1819 year old, I wouldn't ask them.
Oh, what did you get? What's it called you Atar?
Yeah. Yeah.
What was your ATAR? Don't care.
(17:03):
It must matter for some things. It matters for getting into uni,
yeah. Which I again like with CFI
didn't think I'd ever get to that uni stage.
I knew I always wanted to be a motorsport and sports and you
know, yap a lot because I just like talking.
But yeah, I kind of was like OK,well, I guess I go to uni is
like the next steps. I never thought I'd finish
school. I never thought like, you know,
(17:26):
what do I do now? I'm.
Not many people. There would be people obviously,
obviously just like you that do have that in their mind as
they're going through their life.
It's not that common. Like it's a small percentage
that would be going through lifelike not picturing themselves
finishing school, not picturing themselves getting married, all
those kind of things. What does that do to your
(17:46):
mindset through through all thattime?
Like, I always feel like if someone told me the date when I
would die, ha, you better believe I'll be living my
absolute best life every single day.
Yeah. Which we should be trying to do
anyway. Yeah.
What's that done for? You I definitely did have many
(18:07):
panic attacks and a lot of anxiety about, you know, like I
don't want to die. Like sorry, that was deep.
No, I, but it's it's spot on. I mean, of course, of course you
would. Yeah, because like my biggest
thing was like leaving my mum and my dad, which they're like
my best mates, like leaving my best friend Michaela, who I call
MU. Like at the time my grandma's
(18:27):
still around and I didn't want to leave her either.
So I was kind of like, I don't want to die, like, yeah.
Like what do you mean? Because they're all talking
about like at the hospital at that time, like I was, she's
getting worse. You know, she's sick.
Or like, you know, her lung functions dropped more.
I think in 2018 my lung functionwas 40%.
Your lungs are functioning at 40% of what a normal person's
(18:48):
would. Yeah, so if you picture
breathing through a straw, that's what it's like to have
CF. Wow, yeah.
Is it hard to get breath? Yeah, well, like now that I'm on
track after, I definitely like whenever I've had to come off it
or I've gotten sick, I'm like, oh, no, not back there.
(19:08):
But it's a lot easier now to breathe.
Like I think I'm at 80. I was at 84, but it's dropped
60% this year, so that's good. But yeah, it was very hard to
breathe all the time. But I was always very active.
Like I'd run on the treadmill. I'd play soccer, netball,
tennis. Gonna say the other day you sent
me a voice message and you were on the treadmill at the time.
That'll make you out of breath and struggling to breathe.
(19:29):
Have you got enough of that going on?
Is that a thing that you do thatyou can actually make it better?
Yeah. So exercise with CF is quite
important. So I work with the PT at the
moment she's based on the Gold Coast, which is fine.
So I just do it through. To like jog.
Up to see her, No. That's not really being a PT,
just going. I'm on the Gold Coast, run to
me. Yeah, you get there and she
(19:50):
goes, good job, run back. Good, I've been working with her
doing strength training and justworking on like walking 2K's
3K's a day. Yeah consistently working with
her for like 6 months. My lung function went back over
baseline. So you saw results?
So unfortunately I don't have abs anymore, but it was
depressing. But exercising kind of.
(20:12):
It helps your lungs move. All the mucus can move and get
out of your lungs and it kind ofjust helps you do a form of
physio. Yeah.
If any doctors that work in CF areas or nurses here, that's the
next part. Turn away.
Oh, OK, here we go. You meant to do what's called
pet mask, which is airway clearance.
Yeah. And growing up, I would do it,
(20:32):
but I never saw any results fromit.
Some people just don't. Some people do.
Some people still do it whether or not like they see results
when. You say?
What kind of are you talking? Yeah, like you have to, you have
to blow into this. I haven't got a photo of it, but
no. I don't wanna see a photo of it.
Let me show you the tube that I.Well, it's like this little,
(20:52):
it's called an aerobica, Yeah. And it like kind of it has a
flutter system in it, so it kindof breaks up the mucus and
shakes your chest a little. Bit what do you do?
You. You blow air into you.
Have to blow into it and hold itfor three seconds and do that 15
times, right? And then so it's not like a
puffer. That's that.
It's going down to the lunge. You're breathing out.
Yeah. And that does this thing.
Yeah. So when I was a kid, it used to
(21:13):
just be a proper mass that you'dblow into and you'd have a gauge
and you'd have to hold it in between.
Oh yeah, make it a game. You got a gamify it.
Yeah, yeah, it's horrible though.
I hated it. Used to block my ears, but the
older I got it was always exercise.
Made the bigger difference to mylung function so I stopped doing
PIP. Listen, you know you and you
know what works. I.
Wouldn't recommend it. Yeah, I mean, what do doctors
(21:34):
know? Hey.
Wow. All right.
Where are you at now? You're good.
Yeah. Yeah, good.
For now, I think it's just more about managing it, as I said,
like my lung function has dropped after getting COVID for
the first time this year. I dropped 2%, which I was like,
oh, that's not too bad, easily to come back from.
But then it just continued dropping over the year and I was
like, OK. Is it on the way back up now?
(21:56):
I have an appointment, just impossible find out there.
Let us know, Yeah. Do you know, can you feel it
drop in your capacity? Yeah, I think it was over like a
three month, the area that it dropped 6% and I could tell when
I was walking three KS, it'll take me 35 minutes instead of 30
or 36 minutes. And I'm like, physically like
trying to breathe real deep. And it's not really doing too
(22:16):
much. And your asthma papers aren't
doing too much to open up your Airways.
And I thought. Yeah.
So it's good when you have thosebaseline sort of things as well.
You know what your three KS normally feel.
Yeah, yeah. Break a Sweat for CF is on at
the moment. And what can people do with
that? So there is a link that they can
donate to. I do have a team where people
want to walk with me and they want to do their own thing
(22:38):
virtually that I think it's 5 KSA day.
I do 2 KSA day. That's really I have a thing
called Taylor Salty Crew that people can join and raise money.
How good? I saw that it was called
Taylor's Salty Crew, and I had no idea why, and I thought it
was a very strange name. I thought it was a bit piratey.
Taylor's Salty Crew. He's salty dogs.
(22:58):
No, We've heard about your shin pads.
Yeah, that salt The Salty Crew. OK.
Yeah. So all the donations that are
made, I think it's around the $100,000 mark.
Yeah, they're trying to raise, and I think I've got a 1500 gold
to put towards that. People have raised 5 grand so
far with their teams. If they want to donate, it goes
towards CF together. Having the financial ability to
(23:22):
give financial help to CF people, not giving them handouts
of money. A lot of us don't get government
support. Centrelink for instance, like I
think I was on mobility allowance going through study
and everything, but it was like $60.00 or whatnot so.
And so you'd need that financialsupport because you can't work
full time. So a lot of us don't get
financial support, and that's where CF together coming to help
(23:43):
us buy like equipment, like a nebulizer.
So mine died a couple months ago.
And I was like, uh oh. Isn't that the thing from Men in
Black that he wipes their memory?
The nebulizer. Neuralizer.
Yeah, sorry. Different one that I was like,
you've got one of those. No wonder it died.
You were using it wrong. I know, right?
(24:04):
Always forgetting where you put it.
Get rid of that trauma. Remember, you know what I'm
talking about. You want one of those, so that's
OK. That's really interesting
because different charities and the different things that they
do with the money, I know you know, some it's raising the
money to go towards research to find things like these new drugs
that can help. And then there's other things
(24:24):
that you know, there's one here on the Central Coast, Central
Coast kids in need, hearing about those ladies and what they
do and a kid gets a diagnosis and they're going to have all of
these medical bills or anything.And these ladies will just say,
go to this chemist, we're setting up an account for them
and just it'll be taken care of,don't worry.
It's awesome. That there are people out there
raising money to be able to do things like that and to help out
(24:47):
people like you. Like you shouldn't be having to
go and buy the nebulizer and allof these other things when you
can't even. Why can't you work full time
like from home? Yeah, so I might be able to, but
energy levels with CF are a lot different to the normal person,
like even after a race weekend. That's why I don't go to every
(25:08):
single one. I get quite run down and quite
tired. I think when I went to South
Australia in 2023, I like slept for a week after.
Wow. I get like that when I go out to
events, it's just being over people's.
But OK, good, maybe it's not thesame thing.
Yeah, you'd sleep like for like a sole lake, it'd take you to
(25:28):
catch back up on wow, be so exhausted.
Yeah, we just have like less energy than other people.
So I could probably do it from home.
But like when you're talking about motorsport, like it's not
always, you don't always get that from home, Yeah, kind of
option, unfortunately. Oh, that's just awesome.
There's these organisations thatare out there that are helping.
If people want to support you and what you're doing, what's
(25:51):
the easiest way to find it? I can probably.
Show you the link but it's it's just I should.
Read it, it's in the show notes.Let's say that you can click on
the link there. But if they did just want to
Google it up, is there an easy way to find?
It's just break a sweat.com dot AU slash Taylor Purvis.
Yeah, I think. I'll have the link in the show
notes, so however you're listening to this, have a look
at the episode description, you'll see the link there.
(26:11):
I love talking to people like you about things like this.
It shines a bit of a light on it, a bit of awareness.
Before today, I had no idea. I'd seen cystic fibrosis, seen
CF, and had no idea what it was.Yeah, good to get a real
perspective from someone who's been living with it.
Yeah, like I feel like sometimesyou don't know how confronting
to get with it if you really open up on every single thing
(26:33):
about it. Like, you know how underweight
you can be, you know how sick. And like I was 40 kilos when my
lung function was at 40 and I'm 511, six foot.
Wow. Not.
A great look. It can be confronting to talk
about that, which is kind of like not just for me, but for
like people like you 2 that are hearing it and experiencing it
through Netherlands. Being like, this is someone's
(26:53):
life and you know, like I laugh because what do you do?
So it does depending on where someone is at that moment and
where they are in their life, itcan hit them in in a way.
I think you've given us enough to know that's pretty serious.
No, it could be and is a lot more serious than what we're
even getting to hear. Yeah.
(27:15):
You took us there with the. Your daughter's not going to
live past 12. Yeah.
Yeah. Sorry.
Something about that one that just that line plot.
Hear that? Do you know this next one that's
coming in February is for you? Yeah, so apparently it's better
so track after. Like a lot of people with CF
(27:36):
struggle to put on weight, I wasone of those.
It didn't matter how much he ate.
I was told to eat 2 miles bars aday to try and gain weight and
keep it on. I don't have that problem.
We got a different thing going on here.
Well now with truck after like Ican put weight on and hold it
unfortunately. I now yeah for you.
I know. Right, I now have a gut which is
(27:59):
so good. It's start coughing more,
alright? He said to the girl.
Let's see it. Hey, thanks for jumping on here
and having a chat to us again. The link is there in the show
notes if you wanna help out. Taylor, thanks so much for
jumping in. No problem.
With Rabbit, I'm Rabbit. I record this podcast inside a
cute little retro caravan from 1967 that I've tore around all
over the place. Fan podcast with Rabbit, my
guest for this episode today, her name is Taylor.
I'm not totally sure how we knoweach other.
We've messaged back and forth a bunch of times.
I've promoted some things that you've done with Is it sweat
(00:25):
Timber? It's called Break a sweat for
CF. Break a sweat, OK, When the fact
that I knew that there was one called Sweat Timber, that
happens as well. They're separate.
The CF is cystic fibrosis, whichTaylor has and I know nothing
about, but I know it's always interesting to find out more
about these things. So you have cystic fibrosis?
(00:48):
Is this a thing from birth? Yeah.
So it's genetic. Yeah, I guess I just saw your
face. You just went, how much do I
give here? Because you know everything.
Yeah, And you got to dumb it down for people like me.
So I'm not sure if you ever watched the Five Feet Apart
movie? No Cool.
(01:09):
Well, that's about CF. But what it What is cystic
fibrosis? It's so I what?
Is the statistics on cystic fibrosis.
Well my use by date was 12. What?
I was meant to die at 12. Really.
Yeah, 12 and then 14, and then my lung function dropped to 40%
(01:29):
when I was 16 and I was being put on the wait list through
lung transplant. OK, so it's all it's lungs,
yeah. Right.
So yeah. I hope so.
Otherwise what are they doing? Yeah.
So you were on the list to get lung replacement?
Both. Yeah, double.
So I was being placed on that wait list and then a drug called
(01:49):
track after came along and I gotput on the drug trial at 16,
which wouldn't be here without that, I don't think I.
Think a lot of us trials and drugs around 16.
Yeah, not me, obviously, I just friends that I saw it.
There's something to do with. Why am I trying to explain this?
I was going to say it's something.
It's a mucousy thing of the lungs.
(02:11):
Yeah, there, I said it. Yes, thick mucus.
Yeah, that's great. But yeah, so CF is a respiratory
illness, It's incurable, it's genetic.
You get it from your mum, dad being a carrier of the genes.
So hypothetically, if someone has CF, they'll be able to carry
it on to their children, but if their partner doesn't have the
gene, they won't get it. Oh really?
(02:33):
Yeah, no one else it. Takes 2.
Yeah, mind blowing. Wait, so the mum and the dad
both have to have cystic fibrosis?
No, they both have to have the gene for CF.
Oh, so is it almost a thing then?
Where? Like it sounds horrible and
(02:54):
heartless, but you know where I'm going?
Like you meet someone and you know you carry the gene that you
would get them to. Get tested.
Get. Tested find out if they have the
gene and if they do, if they have kids, the kids will have
cystic fibrosis. Yeah, there's a one in three
chance I think. Right.
(03:15):
So with my family, like mum and dad.
But when did they find out themselves that they carried the
gene? Not until after I was born, so
they didn't. So then the doctors discovered
you have. Yeah, so they did the heel prick
test, which is done at 12 weeks old.
It's where they pricky heal as ababy and they get a blood sample
from that. Oh OK.
And they can do genetic testing.So they do the test and then
(03:38):
they come back with that news and then your parents are told.
Are they told then that it's 12?Years that you've no, no.
So they went to a clinic in Sydney and the doctor that I had
lost a patient that same day andthey waited there all day and
didn't have anyone, like, talk to them or anything.
This doctor later ended up beingan excellent doctor and was the
(03:58):
reason that I was so well to go on track after.
Right. But he basically said you
haven't got the perfect little girl you wanted.
She's gonna die before she's 12.Oh, no.
Oh. That just hit me so hard.
So I think dad grabbed him by the shirt and said what?
Yeah. Oh, what a.
Horrible thing to be told as a parent.
(04:18):
Yeah, so mum and dad like like Istill live at home with them
'cause like chronic health can'twork full time, but they've
always been quite like protective and if I I needed
anything they'd always be that support, which I'm pretty lucky.
For yeah, you're the golden child.
I'm I'm pretty sure you've got anything you wanted your whole
life. Yeah, there's ever been an
excuse to be a spoiled kids. Ohh and when they try and tell
(04:42):
you like just clean your room oranything, you're just like hey,
I'm not even meant to be here. Yes.
I've got a joke where like something will happen.
Like mum almost passed away a couple years ago.
She got really sick and she's like, oh hey, like I almost
died. I was like same.
OK, wow. It's funny in those situations
where, you know, to others that they would go, oh, that's not,
(05:03):
you know, joking about that kindof stuff.
No, we joke about it all the time.
When you are in it and it's yourlife, yeah, you can find some
real dark humour, yeah. And it helps.
It does. Yeah.
I think like, growing up, my friends would be like, you know,
I'd be coughing up a lung. Basically.
They're like, oh, would you cough it up already?
I'm like, I'm trying. Or they'd be like, can you die
quiet? I'm like, I'm trying wow it just
(05:25):
sounds terrible. So the first number they were
given was 12 as in you wouldn't live past 12 years old?
And is that it must be based on stats.
Yeah, I think I've always had like a quite mild case of CF So
it was kind of just like, unfortunately that doctor had a
pretty rough day and kind of just blurted out, you know,
(05:45):
don't expect it to live past 12 kind of thing.
So. Oh, right.
But here I am and. We're at 2323.
Yeah. Isn't that funny?
I always talk about how you never know what anyone's going
through. You look at anyone, you'd have
no idea to look at you. No idea that you have this.
No. That's great.
At all invisible superpowers, basically.
(06:07):
So what does your day look like?Like what's happened today?
Got up head puffers breakfast track after that kind of thing
in the what did you? Say.
I got up and had like my asthma puffers.
But was it breakfast track after?
Track after so I have to have like it's the drug right so yeah
track after I used to have to doairway clearance three times a
day and then when I get sick it'd be like 5 or 6 times a day
(06:27):
depending Don't tell you the. New.
Amazing drug has come along. Yeah, and This is why you do the
fundraisers for all of these things.
Cancer Council all. The sicknesses.
All the sicknesses, all the charities, because it's exactly
for that thing. You raise the money, they can do
more research, and then they find this thing.
Yeah, and they'll find more things.
(06:48):
So. There's a new one called Aleph
Trek that we should get in February.
They're saying which is better than Trek After.
Trek After has its side effects where it's mental health is
quite bad, like you get really bad anxiety and depression.
There's sometime neuropsychological side.
Effects caused by that Mm Hmm what are you hearing about this
new one? Apparently it has better sweat
(07:09):
chloride results. So they do like a they put a
thing on your wrist and they do a sweat test and see how long
'cause we're super sweaters. Fun.
OK, We sweat a lot. Right, that's I gotta go back to
that because it's Sweatimba, although it's not what's yours.
Break a sweat. Break a sweat.
It's a better name. Although I don't mind Sweatemba.
No, it's kind of cool. I mean, it's not as good as like
(07:30):
Rocktober. Yeah.
And Movember and stuff. It's a bit of a stretch with
Sweatemba. Yeah.
What's the sweat tie in? Yeah, so we're, but I was always
called like a super sweater at the CF clinic.
Interesting. Just because I sweated so much.
Really. Yeah.
But are we talking just like underarms?
No. No.
Everywhere. You just sweat.
Yeah. When I like you're out on a hot,
(07:51):
sunny day and you're just a little.
Tradie if they're out in the sun, yeah, yeah.
And you just, you just get like that.
All the time, yeah. So not anymore because the track
after it, right. But when I played soccer, my
soccer shin pads, you pull them off after and it'll be all like
crystallized salt because I was that sweaty.
You lose a lot of salt and you sweat normally.
(08:11):
Does that have anything to do with the lungs?
It's all tied into it kind of thing.
So we see if it affects your lungs, pancreas and bowels.
So because of how thick the mucus is in your body, the mucus
membranes because we're missing a CFTR protein kind of thing and
that's what track after tries tofix.
And that's affecting your respiratory which then affects
(08:32):
the blood. No, just.
My life. Yeah, I mean, you'd know.
But for me it just effects like you're very tired all the time.
You're like you can tell me I get sick for instances like my
under eyes go really dark so of.Course, I'm looking straight at
them right now. They.
Look, all right, they're. All right, you might be on the
way to coming down and say, mindyou, you'd look at me, right?
(08:54):
No, that's just I've had five hours sleep last night.
I'm thinking as you're saying that because you get it when
like if I talk to people about ADHD, right, which I have been
diagnosed with a medicated for it.
And now and whenever I talk to people and they go like what
sort of things? And then I run through things
like, you know, and wildly off, off track, doing 100 things at
(09:15):
once and also not doing anythingat once.
And all these things people go, I think I might have that.
You're sitting there going. I get dark under the eyes.
I get really tired. I'm sitting there going, God, I
should get the the heel prick test now, I reckon.
I reckon you know by now. Yeah, well, some people haven't
been diagnosed until they're 4050.
(09:36):
Sixty even. What?
Yeah. So sometimes there can be really
rare genotypes where they're notknown.
What would they go through life of them being out of breath?
Yeah, sweating a lot. Yeah, so all the CF symptoms,
lots of chest infections, alwayssick.
But not know that it's that, yeah.
So some of them mightn't be thatsick.
I'm in a thing called the CF Hub, so they're probably gonna
(09:57):
watch this. Say hello.
Hey. Hey, Hub.
But one of them wasn't diagnoseduntil later in life.
And she was like, fine. She was always just a bit less
stable than other people. Yeah, 'cause obviously, like,
it's invisible, like disability.Yeah, invisible illness.
So yeah, just looking at someoneyou wouldn't know.
It's a lot of those, though. I mean, not that, yeah, they're
(10:17):
all different and, and different, but mental illness,
yeah, people mask that very well.
There's a lot of invisible illnesses.
And what's interesting is that some people are carrying these
things and don't know that they are.
Yeah, yeah. If you take your car to the
mechanic, they can plug in this device under the dash.
You know about cars? Yeah, Yeah.
(10:38):
They plug it in under the dash and it gives a readout of all
error codes and things to look at.
When are we getting that for us humans?
I don't know. We just walk in and they plug a
thing into US. Yeah.
Or they do a scan or something. And they actually, I did have an
answer on that just recently. Someone, I heard a doctor
talking about that and they weresaying that they could do that.
(11:00):
The problem is you lie down, this thing, you get a scan, they
will tell you, you have arthritis in your knee, You have
this, you have this, you have this.
Because we all do. Like we've all got stuff wrong
with us that we don't know about.
And then you just fixate on it. And there's a thing of just
like, living your life and dealing with the big stuff when
(11:21):
it comes along or if it's affecting your quality of life.
But yeah, it was a thing of justgoing, oh, you, the things you
would find out that are broken in you.
You're like, well, I gotta get that fixed.
Well, there's a point. You've gotta accept that you're
a used vehicle. Yeah.
Push it in the Creek. I'm kidding.
It's, you know, you are not a assoon as you drive it off the car
(11:45):
lot, it's not worth as much and you're gonna get scratches and
Dings and things. You are not gonna keep it in
pristine condition. So glad I've turned this into a
car analogy. So Taylor actually does all the
stuff with. Well, you love F1.
Yeah. And big motorsport girl, Yeah.
Because my daughter don't know from the podcast, she wants to
(12:06):
be a Ferrari F1 engineer workingon the team there in Italy.
That's the goal. Maradelo, yeah.
And she through you, you've put her in touch with a few
different people. And we came up and saw you at a
cart day up in Newcastle. Yeah, that was fun, Yeah.
Yeah, we actually had a really big turn out at Newcastle for
(12:26):
Akci should say the proper name.SB Tools, Australian Cartoon PC,
President of Lancaster. Please get the sponsors names
in. Think of the Mitre Chan have
been big supporters of the pod and podcast right from the start
and you get all the stuff from them that you'd expect to.
You get plants, you get all the Weber stuff, you get all the
steel here, the amazing principal kitchens, but it's the
(12:46):
stuff that you don't expect like.
This lady comes in and she's hired a goat, but to clear some
lands and she wanted to work outa way how to tether this goat.
I come up with an idea of a bit of stainless steel wire between
2 trees, like a zip line betweenthe two trees to the goat.
She took my advice. I don't know how it turned out,
but she was very happy with the service that she got.
(13:07):
That that's what you get. And the mighty helpful King
Cumber Minor. Jen, have you been to Guandalin
Bowling Club? They're right there on the
shores of Lake Macquarie. They do delicious meals upstairs
in the Four Shore Bistro and Cafe which is run by the Dish
Catering Group. So you know it's good stuff and
you can dine out on the balcony looking out over the lake.
It is beautiful. They got the cute little 4 shore
(13:30):
kiosk for a coffee and snacks right by the jetty.
The entertainment's top notch. They got Friday night seafood
raffles and sun they sessions with live music in the beer
garden. You wanna find out what's
happening at the club? Check out their Facebook page or
visit guadalinbowlingclub.com dot AU.
(13:53):
So back to cystic fibrosis, whatis your current use by date?
They turned around to me last clinic appointment and I'm like,
oh, you're going to outlive all the loss.
You're going to be old and wrinkly.
And I'm like what? That was what I wondered.
So you said at the start that it's incurable, but you can live
a full life with it, can you it?Depends how your illness is.
So for me, apparently, yeah. Which is weird because, like, I
(14:15):
haven't planned to live a long life.
I've kind of been. Are you serious?
Yeah. Well, I mean, yeah, it makes.
I never thought about getting married anything like that.
Like I just thought, yeah, I'll be dead by 20.
So but now I'm. 23 so that and laugh.
Sorry, it's. Just so weird.
She's really just sitting there having a good whole laugh about
it. Is there without going morbid
(14:37):
now then though, is there a chance of you'll have one of
these appointments and they'll go, yeah, it's gone bad.
So this year my lung functions dropped 6%.
I caught COVID for the first time in February, which was.
Hey same, I only got it first time this year.
The whole thing with COVID, realbig bad respiratory yeah,
illness. Yeah, so.
Like they were worried about people with asthma.
(14:57):
Oh, yeah, I remember going to school and they were like, oh,
the only people that are gonna die are gonna be like the people
that are already sick. And my whole group just turned
to look at me, and I was like, cheers.
Oh, no. Like, it was a pretty scary
thing. From my point of view.
It was terrifying. I had a lot of panic attacks
with all their, like, respiratorads on TV or, like, really?
Yeah. So I just stopped watching TV
for a while and just listened tothe radio.
(15:18):
Everyone was scared. Not everyone.
Some people were, you know, whatever.
It's just a. Goal.
Yeah, there were. I mean, we went through all so
many different things. There was a point there where
you're just going, is this us forever now?
Like, is this just what happens and this thing's going to mutate
into something else because it kept being different strains and
things like that. I can't even imagine what it
(15:38):
would be like for Someone Like You.
Yeah, going through that. Like, we think we're scared.
I don't want to get it. And being all cautious, like how
cautious did you have to be? I didn't go out to parties, I
didn't go to the shops anymore. I still wear a mask now which
people look at you going what are you wearing a mask for all?
Right, because you, you had COVID for the first time this
(15:59):
year, but you, you could get it again.
Yeah, like basically I was home for a while in year 12.
I missed a lot of school, which luckily like I had a couple
classmates who used to ring me to make sure like I didn't miss
out on any work. Wow.
But I wasn't there for maybe 3 months of year 12, so maybe
even. Later, I was going to say, did
you do HSC? It's like, OK, you're 23, you
(16:21):
probably did. I did.
Didn't do too good, but that's OK.
But well enough, no? I I didn't either they.
Still gave me a like a like an actual number that I got.
Oh yeah. Which I guess.
It's just nice to get something.Yeah, yeah, it.
Was like in the 40s like. Right.
(16:41):
Yeah, I. Was like.
Does that even matter? No.
Here's the weird thing, right, If I was to employ someone now
to come and work at Pod Van Media, there's no way I'd be
asking them. No, even you at 23 years old,
it's not that long ago that you did it.
Even if I was employing a 1819 year old, I wouldn't ask them.
Oh, what did you get? What's it called you Atar?
Yeah. Yeah.
What was your ATAR? Don't care.
(17:03):
It must matter for some things. It matters for getting into uni,
yeah. Which I again like with CFI
didn't think I'd ever get to that uni stage.
I knew I always wanted to be a motorsport and sports and you
know, yap a lot because I just like talking.
But yeah, I kind of was like OK,well, I guess I go to uni is
like the next steps. I never thought I'd finish
school. I never thought like, you know,
(17:26):
what do I do now? I'm.
Not many people. There would be people obviously,
obviously just like you that do have that in their mind as
they're going through their life.
It's not that common. Like it's a small percentage
that would be going through lifelike not picturing themselves
finishing school, not picturing themselves getting married, all
those kind of things. What does that do to your
(17:46):
mindset through through all thattime?
Like, I always feel like if someone told me the date when I
would die, ha, you better believe I'll be living my
absolute best life every single day.
Yeah. Which we should be trying to do
anyway. Yeah.
What's that done for? You I definitely did have many
(18:07):
panic attacks and a lot of anxiety about, you know, like I
don't want to die. Like sorry, that was deep.
No, I, but it's it's spot on. I mean, of course, of course you
would. Yeah, because like my biggest
thing was like leaving my mum and my dad, which they're like
my best mates, like leaving my best friend Michaela, who I call
MU. Like at the time my grandma's
(18:27):
still around and I didn't want to leave her either.
So I was kind of like, I don't want to die, like, yeah.
Like what do you mean? Because they're all talking
about like at the hospital at that time, like I was, she's
getting worse. You know, she's sick.
Or like, you know, her lung functions dropped more.
I think in 2018 my lung functionwas 40%.
Your lungs are functioning at 40% of what a normal person's
(18:48):
would. Yeah, so if you picture
breathing through a straw, that's what it's like to have
CF. Wow, yeah.
Is it hard to get breath? Yeah, well, like now that I'm on
track after, I definitely like whenever I've had to come off it
or I've gotten sick, I'm like, oh, no, not back there.
(19:08):
But it's a lot easier now to breathe.
Like I think I'm at 80. I was at 84, but it's dropped
60% this year, so that's good. But yeah, it was very hard to
breathe all the time. But I was always very active.
Like I'd run on the treadmill. I'd play soccer, netball,
tennis. Gonna say the other day you sent
me a voice message and you were on the treadmill at the time.
That'll make you out of breath and struggling to breathe.
(19:29):
Have you got enough of that going on?
Is that a thing that you do thatyou can actually make it better?
Yeah. So exercise with CF is quite
important. So I work with the PT at the
moment she's based on the Gold Coast, which is fine.
So I just do it through. To like jog.
Up to see her, No. That's not really being a PT,
just going. I'm on the Gold Coast, run to
me. Yeah, you get there and she
(19:50):
goes, good job, run back. Good, I've been working with her
doing strength training and justworking on like walking 2K's
3K's a day. Yeah consistently working with
her for like 6 months. My lung function went back over
baseline. So you saw results?
So unfortunately I don't have abs anymore, but it was
depressing. But exercising kind of.
(20:12):
It helps your lungs move. All the mucus can move and get
out of your lungs and it kind ofjust helps you do a form of
physio. Yeah.
If any doctors that work in CF areas or nurses here, that's the
next part. Turn away.
Oh, OK, here we go. You meant to do what's called
pet mask, which is airway clearance.
Yeah. And growing up, I would do it,
(20:32):
but I never saw any results fromit.
Some people just don't. Some people do.
Some people still do it whether or not like they see results
when. You say?
What kind of are you talking? Yeah, like you have to, you have
to blow into this. I haven't got a photo of it, but
no. I don't wanna see a photo of it.
Let me show you the tube that I.Well, it's like this little,
(20:52):
it's called an aerobica, Yeah. And it like kind of it has a
flutter system in it, so it kindof breaks up the mucus and
shakes your chest a little. Bit what do you do?
You. You blow air into you.
Have to blow into it and hold itfor three seconds and do that 15
times, right? And then so it's not like a
puffer. That's that.
It's going down to the lunge. You're breathing out.
Yeah. And that does this thing.
Yeah. So when I was a kid, it used to
(21:13):
just be a proper mass that you'dblow into and you'd have a gauge
and you'd have to hold it in between.
Oh yeah, make it a game. You got a gamify it.
Yeah, yeah, it's horrible though.
I hated it. Used to block my ears, but the
older I got it was always exercise.
Made the bigger difference to mylung function so I stopped doing
PIP. Listen, you know you and you
know what works. I.
Wouldn't recommend it. Yeah, I mean, what do doctors
(21:34):
know? Hey.
Wow. All right.
Where are you at now? You're good.
Yeah. Yeah, good.
For now, I think it's just more about managing it, as I said,
like my lung function has dropped after getting COVID for
the first time this year. I dropped 2%, which I was like,
oh, that's not too bad, easily to come back from.
But then it just continued dropping over the year and I was
like, OK. Is it on the way back up now?
(21:56):
I have an appointment, just impossible find out there.
Let us know, Yeah. Do you know, can you feel it
drop in your capacity? Yeah, I think it was over like a
three month, the area that it dropped 6% and I could tell when
I was walking three KS, it'll take me 35 minutes instead of 30
or 36 minutes. And I'm like, physically like
trying to breathe real deep. And it's not really doing too
(22:16):
much. And your asthma papers aren't
doing too much to open up your Airways.
And I thought. Yeah.
So it's good when you have thosebaseline sort of things as well.
You know what your three KS normally feel.
Yeah, yeah. Break a Sweat for CF is on at
the moment. And what can people do with
that? So there is a link that they can
donate to. I do have a team where people
want to walk with me and they want to do their own thing
(22:38):
virtually that I think it's 5 KSA day.
I do 2 KSA day. That's really I have a thing
called Taylor Salty Crew that people can join and raise money.
How good? I saw that it was called
Taylor's Salty Crew, and I had no idea why, and I thought it
was a very strange name. I thought it was a bit piratey.
Taylor's Salty Crew. He's salty dogs.
(22:58):
No, We've heard about your shin pads.
Yeah, that salt The Salty Crew. OK.
Yeah. So all the donations that are
made, I think it's around the $100,000 mark.
Yeah, they're trying to raise, and I think I've got a 1500 gold
to put towards that. People have raised 5 grand so
far with their teams. If they want to donate, it goes
towards CF together. Having the financial ability to
(23:22):
give financial help to CF people, not giving them handouts
of money. A lot of us don't get government
support. Centrelink for instance, like I
think I was on mobility allowance going through study
and everything, but it was like $60.00 or whatnot so.
And so you'd need that financialsupport because you can't work
full time. So a lot of us don't get
financial support, and that's where CF together coming to help
(23:43):
us buy like equipment, like a nebulizer.
So mine died a couple months ago.
And I was like, uh oh. Isn't that the thing from Men in
Black that he wipes their memory?
The nebulizer. Neuralizer.
Yeah, sorry. Different one that I was like,
you've got one of those. No wonder it died.
You were using it wrong. I know, right?
(24:04):
Always forgetting where you put it.
Get rid of that trauma. Remember, you know what I'm
talking about. You want one of those, so that's
OK. That's really interesting
because different charities and the different things that they
do with the money, I know you know, some it's raising the
money to go towards research to find things like these new drugs
that can help. And then there's other things
(24:24):
that you know, there's one here on the Central Coast, Central
Coast kids in need, hearing about those ladies and what they
do and a kid gets a diagnosis and they're going to have all of
these medical bills or anything.And these ladies will just say,
go to this chemist, we're setting up an account for them
and just it'll be taken care of,don't worry.
It's awesome. That there are people out there
raising money to be able to do things like that and to help out
(24:47):
people like you. Like you shouldn't be having to
go and buy the nebulizer and allof these other things when you
can't even. Why can't you work full time
like from home? Yeah, so I might be able to, but
energy levels with CF are a lot different to the normal person,
like even after a race weekend. That's why I don't go to every
(25:08):
single one. I get quite run down and quite
tired. I think when I went to South
Australia in 2023, I like slept for a week after.
Wow. I get like that when I go out to
events, it's just being over people's.
But OK, good, maybe it's not thesame thing.
Yeah, you'd sleep like for like a sole lake, it'd take you to
(25:28):
catch back up on wow, be so exhausted.
Yeah, we just have like less energy than other people.
So I could probably do it from home.
But like when you're talking about motorsport, like it's not
always, you don't always get that from home, Yeah, kind of
option, unfortunately. Oh, that's just awesome.
There's these organisations thatare out there that are helping.
If people want to support you and what you're doing, what's
(25:51):
the easiest way to find it? I can probably.
Show you the link but it's it's just I should.
Read it, it's in the show notes.Let's say that you can click on
the link there. But if they did just want to
Google it up, is there an easy way to find?
It's just break a sweat.com dot AU slash Taylor Purvis.
Yeah, I think. I'll have the link in the show
notes, so however you're listening to this, have a look
at the episode description, you'll see the link there.
(26:11):
I love talking to people like you about things like this.
It shines a bit of a light on it, a bit of awareness.
Before today, I had no idea. I'd seen cystic fibrosis, seen
CF, and had no idea what it was.Yeah, good to get a real
perspective from someone who's been living with it.
Yeah, like I feel like sometimesyou don't know how confronting
to get with it if you really open up on every single thing
(26:33):
about it. Like, you know how underweight
you can be, you know how sick. And like I was 40 kilos when my
lung function was at 40 and I'm 511, six foot.
Wow. Not.
A great look. It can be confronting to talk
about that, which is kind of like not just for me, but for
like people like you 2 that are hearing it and experiencing it
through Netherlands. Being like, this is someone's
(26:53):
life and you know, like I laugh because what do you do?
So it does depending on where someone is at that moment and
where they are in their life, itcan hit them in in a way.
I think you've given us enough to know that's pretty serious.
No, it could be and is a lot more serious than what we're
even getting to hear. Yeah.
(27:15):
You took us there with the. Your daughter's not going to
live past 12. Yeah.
Yeah. Sorry.
Something about that one that just that line plot.
Hear that? Do you know this next one that's
coming in February is for you? Yeah, so apparently it's better
so track after. Like a lot of people with CF
(27:36):
struggle to put on weight, I wasone of those.
It didn't matter how much he ate.
I was told to eat 2 miles bars aday to try and gain weight and
keep it on. I don't have that problem.
We got a different thing going on here.
Well now with truck after like Ican put weight on and hold it
unfortunately. I now yeah for you.
I know. Right, I now have a gut which is
(27:59):
so good. It's start coughing more,
alright? He said to the girl.
Let's see it. Hey, thanks for jumping on here
and having a chat to us again. The link is there in the show
notes if you wanna help out. Taylor, thanks so much for
jumping in. No problem.
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