May 31, 2025 • 54 mins
What happens when you've spent your whole life thinking your heart condition was "fixed," only to discover it's actually a lifelong journey? Elle Pendrick shares this profound revelation that came after her fourth open-heart surgery, forever changing how she understood her congenital heart disease.
Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.
Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards of Care for Childhood Onset Heart Disease, which includes world-first mental health and neurodevelopmental standards. This unified approach shows how Australia's tight-knit CHD community has created comprehensive care models that focus on whole-person wellness rather than just cardiac function.
The conversation explores fascinating comparisons between Australian and American healthcare systems, drawing from Elle's recent visit to the United States. Her insights reveal how different funding models, advocacy approaches, and support organizations shape patient experiences despite serving the same medical needs. Elle's perspective offers valuable lessons for anyone interested in healthcare policy and patient advocacy.
Most powerfully, Elle describes transforming her medical journey into resources for others. Her book "Your Ultimate Surgery Success Guide" and her platform "Adulting Well" address practical challenges faced by those with chronic conditions—from workplace conversations and financial planning to mental health support. By sharing her expertise on navigating healthcare systems, Elle demonstrates how lived experience becomes a powerful tool for helping others.
Join us for this inspirational conversation about resilience, advocacy, and finding purpose through personal challenge. If you're facing a chronic health condition or supporting someone who is, Elle's wisdom offers both practical guidance and heartfelt encouragement.
Global ARCH’s leadership training opportunity: https://global-arch.org/advocacy-training/
Elle’s Book on Amazon: https://www.amazon.com/dp/B0DCV2TCQZ
Elle’s Website: https://www.adultingwell.au/
Elle’s Blog: https://www.adultingwell.au/Blog
Elle’s Instagram: https://www.instagram.com/adultingwell/
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.
Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards of Care for Childhood Onset Heart Disease, which includes world-first mental health and neurodevelopmental standards. This unified approach shows how Australia's tight-knit CHD community has created comprehensive care models that focus on whole-person wellness rather than just cardiac function.
The conversation explores fascinating comparisons between Australian and American healthcare systems, drawing from Elle's recent visit to the United States. Her insights reveal how different funding models, advocacy approaches, and support organizations shape patient experiences despite serving the same medical needs. Elle's perspective offers valuable lessons for anyone interested in healthcare policy and patient advocacy.
Most powerfully, Elle describes transforming her medical journey into resources for others. Her book "Your Ultimate Surgery Success Guide" and her platform "Adulting Well" address practical challenges faced by those with chronic conditions—from workplace conversations and financial planning to mental health support. By sharing her expertise on navigating healthcare systems, Elle demonstrates how lived experience becomes a powerful tool for helping others.
Join us for this inspirational conversation about resilience, advocacy, and finding purpose through personal challenge. If you're facing a chronic health condition or supporting someone who is, Elle's wisdom offers both practical guidance and heartfelt encouragement.
Global ARCH’s leadership training opportunity: https://global-arch.org/advocacy-training/
Elle’s Book on Amazon: https://www.amazon.com/dp/B0DCV2TCQZ
Elle’s Website: https://www.adultingwell.au/
Elle’s Blog: https://www.adultingwell.au/Blog
Elle’s Instagram: https://www.instagram.com/adultingwell/
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
It was only then, when I went through that full
of open heart surgery and came out the other side,
that I've dedided to realize that congenital heart disease is
full life and there is no cure. Major open heart
surgery for people like me is a temporary fix.
Speaker 2 (00:24):
Welcome too Hard to Heart with Anna. I'm Anna Juworski,
mother of a thirty year old adult with a segal
vetrical heart, and your host. Today's program features a wonderful
interview with el Pendrick, an inspiring OSSI adult form with
a congenital heart effect. Elle will share how her medical
journey shaped her business and advocacy. But before we dive
(00:47):
into that, I'd like to share a little personal update
and some news. After weeks of wearing the latest removable
cast fashion, which was so scratchy I had to wear
a fingerlom's glove underneath. Far too hot for May in
Central Texas, my hand surgeon and physical therapists have given
(01:08):
me the green light to go casts free. Yes, my
formerly broken wrist is healing beautifully and I'm officially out
of my plastic and velco prison. The hardware they used
to fix broken risk these days is impressive. I might
just have bionic parts at outlast the originals. At least
that's the hope. While it's not open heart surgery, this
(01:31):
experience has given me a new appreciation for how long
it takes the body to recover after trauma. We truly
live in a golden age of medicine. So many things
can be fixed, patched up, or improved with science, patience,
and in my case, a lot of awkward one hand typing.
What stands out most is that even with modern medicine,
(01:54):
healing takes time. I'm not good as new, not yet.
Recovery requires time, therapy, and most importantly, a willingness to
rest and listen to my body. In a world that
pushes us to hustle, multitask and binge watch our way
through life, who actually.
Speaker 1 (02:14):
Makes time for healing. So here's my takeaway.
Speaker 2 (02:18):
Sometimes the bravest thing you can do is slow down,
rest and give yourself permission to recover. Whether you're healing
from surgery, heartbreak, or just a tough week. Remember, self
care isn't selfish, it's essential. And if you need an
excuse to take it easy, tell everyone your podcast friend
(02:42):
Anna said so in a few minutes you'll hear my
interview with al Pendrick. She'll share her advocacy work and
discuss mental health building on this theme of self care
and healing. Before that, let's move on to the news.
(03:04):
Global Arch is hosting a free virtual advocacy training course.
This program is designed for patient and family organization leaders
who want to advocate for early diagnosis, timely treatment, and
lifelong care for childhood onset heart conditions like congenital heart
disease and rheumatic heart disease. Whether you're new to advocacy
(03:26):
or one to strengthen your skills, this is a great
opportunity to learn, connect and lead. The course highlights four
interactive virtual sessions from July to October twenty twenty five,
mentorship from experienced advocates, and tools and strategies to lead
advocacy efforts in your community. Apply now at globalarch dot
(03:49):
org and I'll put the link into show notes. The
registration for the training closes May thirty first. If you
miss this training opportunity, check back on the Global Arch
website for future training opportunities. Next up, we'll be talking
with L. Pandrick and author advocate and adult Born with
Coples congenital heart disease in New South Wales, Australia. She
(04:12):
has an amazing story to share with us.
Speaker 3 (04:20):
Heart to Heart with Anna is a presentation of Hearts
Unite the Globe and is part of the hug podcast network.
Hearts Unite the Globe is a nonprofit organization devoted to
providing resources to the congenital heart defect community to uplift,
empower and enrich the lives of our community members. If
you would like access to free resources pertaining to the
HD community, please visit our website at www. Congenitalheartdefects dot
(04:45):
com for information about CHD, the hospitals that treat children
with HD, summer camps for HD survivors, and much much more.
Speaker 4 (04:59):
This content is it's not intended to be a substitute
for a professional medical advice, diagnosis, or treatment. The opinions
expressed in the podcast are not those of Heart to
Night the Globe, but of the hosts and guests, and
are intended to spark discussion about issues pertaining to congenital
heart disease or bereavement.
Speaker 2 (05:20):
Today's guest is el Pendrick. Elpendrick was born in nineteen
eighty three with pulmonary atresia, an intact septum and a
leiky mitrovalve. From a small town called Wagga Wagga in
New South Wales, she and her family frequently had to
travel to Sydney for care. By the time she was
eight years old, she'd lived through three open heart surgeries.
(05:43):
Two more followed at the age of twenty one and
thirty three. To date, she has had over twenty surgeries
and procedures. Ellis an author and has her own business
called Adulting Weal, a resource for helping people with chronic
health conditions. She has been a sea HD ambassador at
conferences in the United States and Australia, and is working
(06:05):
with new Australian National Standards of Care for Childhood on
set heart Disease, which showcases how Australia is advancing PhD
care with a holistic approach. Welcome to Heart to Heart
with Dana l.
Speaker 1 (06:19):
Thank you so much for having me today. Anna, I'm
so thrilled to be here.
Speaker 2 (06:25):
I'm so excited to be talking to another author. I
can't wait to get into that a little bit. But
first let's start by talking about your transition from being
seen by a pediatric cardiologist to your adult clinician. Babies
born with complex hearts in the nineteen eighties weren't expected
to live to adulthood, and I believe you may be
(06:46):
in the first cohort of survivors who made it that far.
Speaker 1 (06:50):
Yeah, I was one of the first ones to survive
into adulthood. There are very luckily a few people ahead
of me, but in the early nineteen eighties the survival
rate was not very good, and so as I progressed
through primary school and high school, it was pretty isolating experience,
and I'd had most of my open heart surgeries to
(07:13):
that date, and then once I got to high school,
I assumed that heart disease was something that I had had,
and then I no longer had it and it was
just life as normal from there. When I was eighteen,
it was my dad's fiftieth in Woggorogan, New South Wales
in Australia, and I thought I would be very cool
(07:35):
and tint some of my lovely blonde hair hot pink
to be really cool at dad's fiftieth birthday party. Do
you remember those caps in the eighties what early nineties,
the hair caps they put and then they pulled some
of your hair through to streak it. For what I
didn't realize is my lovely friend had pulled through most
of my blonde hair and streaked at hot pink. So
(07:58):
instead of having blonde hair with a few pink streaks,
I had peak hair with a few blonde streaks. So
when I got up the stairs and said, how to look,
I've got my hair done for your party, they were
not very impressed. And as the night wore on, we
had a great time and we hit the local nightclubs
in Wa Wag. I was eighteen, and I was really
(08:22):
struggling to get out on the dance floor. I was
kind of good for one dance, and then I'd get
to a point where I just was so breathless i
had to sit down, and then I would do some
chair dancing, and then I would think, oh, it's a
great song. That was back in the nineties, so many
great songs get out there on the dance floor, and
then I would run out of steing very quickly. So
(08:42):
once I got home, I kind of crashed and fell
asleep and thought nothing of it really until the next
day when I was really not feeling well and I
had some chest pains and shortness of breath and called
out to my parents and I really don't feel good,
and proceeded to pass out almost so they yeah, and
they carried me down to the car and threw up
(09:04):
in the garden on the way, and we got down
to the local hospital in Regional New South Wales, and
as they did in the nineties, they pulled out my
massive paper file because they knew me quite well. Down there,
they said, oh, okay, you've got some very serious heart
condition issues. And the nurses came in in the emergency
room because I went straight through with my chest pains,
(09:24):
and my mum was there with me and dad, and
they said what drugs did you take? And I was
just eighteen, and I said I didn't take any drugs.
And obviously I'm sitting there with hot pink care and
very gray, very pale, low pulsephra, not feeling well, and
they're like, oh, we can't help you unless you tell
us what drugs you took. I said, I didn't take
any drugs, and then they asked my parents to leave
(09:47):
and asked the same questions but more forcefully. They let
my parents back in and mom said, well, what they
asked and I said, oh, they asked. Mum had a
good chuckle at that. The nurse said, oh, you guys
still talk about this stuff for like, yeah, like medical
stuff is very common for us. It's not anything to
hide or be ashamed of. I'm not going to lie
(10:08):
to you. They said, Oh, you'd be surprised how many
eighteen year olds don't have that experience. And I got oh, okay.
And then the next couple of days I graduated from
the emergency room onto a ward and they found out
that I had set to seema and pericarditis, and sept
to seema is a blood infection and pericarditis is inflammation
(10:28):
of the muscle around the heart. So being inn a
regional area, they said, we don't have the capacity to
treat you properly. Here. I'm just getting onto an air
ambulance flying up to Sydney, And because I was eighteen,
none of my parents were allowed to come with me,
so I was alone. And that was the first time
I got unloaded with the ambulance onto the street front
(10:52):
of a major Sydney hospital with no family and no
one there as they wheeled me onto the adult cardiology ward,
the first time I had ever set foot on one,
they shoved a clipboard at me and said, oh, you
need a central line signed here. Do you have health insurance?
What's your Medicare number? I didn't know the answer to
any of that, sure, and I just looked at them
(11:14):
very blankly, and the lady just tapped and was like,
just sign here. And I was like, I don't even
know what I'm signing for. Sure, Okay, here you go,
and went in and had their central line put in
and stayed a couple of weeks. By the time my
family arrived, I was pretty upset. The central line process
was not fun, and I felt really alone and it
was really hard. So obviously survived that after a few weeks.
(11:36):
It really didn't occur to me that congenital heart disease
was for life and there actually is no cure. I
just thought that little joy ride to hospital when I
was eighteen was just something that had happened, that was abnormal,
and that was it. When I was twenty one and
they said I needed a fourth oken heart surgery, it
(11:57):
was a real shock to me. And it was only
then when I went through that fourth open heart surgery
and came out the other side that if darded to
realize that congeneral heart disease is full life and there
is no cure. Major open heart surgery for people like
me is a temporary fit.
Speaker 2 (12:14):
Yeah, okay, so I have to know did getting your
hair dyed have anything to do with the episode that
you have?
Speaker 4 (12:23):
Now?
Speaker 1 (12:23):
They don't know where I got it from, so s
to see me really weird, very common. Yeah it was
really weird, but yeah I looked very cool in all
my hospital photos from that trip.
Speaker 2 (12:36):
You hate to think of hair dye doing something like
that to you, but it seems like that was the
most radical thing that you did right before your episode.
So you have to wonder if there's a causal link.
Did they ask you did you just get your hair
dyed or what have you done different?
Speaker 1 (12:55):
Or they did ask all those questions and the hair
dyed they did rule that out. There's lots of different
ways you can transmit sept to see MEA and we thought, okay,
it's pretty rare. It's not that common for it to
just spring up on people, but when it does, it
can be very serious. And I was sitting at the
hospital that a week into being in Sydney, and my
(13:21):
dad was reading the newspaper and he said, oh, this
woman on the front page had sept to seema and
then he was reading He's like, she didn't make it,
and I was like, awesome to th extent.
Speaker 2 (13:31):
Oh my god, Yeah, Dad, you maybe you shouldn't have
said that outline world.
Speaker 1 (13:35):
Oh do fine. I was like, okay. To be honest,
looking back, it didn't really face me at the time
because I think I was just so sick. I was like, oh, okay, whatever.
But yeah, looking back, I'm just like, that's pretty serious.
Yes it is.
Speaker 2 (13:49):
You are a complex patient and you've undergone so many
open heart surgeries and procedures. Can you tell us about
some of the specific challenges that you have faced growing
up with such a rare condition as such a small
town in Australia.
Speaker 1 (14:04):
I think one of the biggest challenges living in regional
Australia is the amount of medical care that you can
get with conflicts con general heart disease. They don't have
their capability to do all your treatment there right or
There's a lovely new highway that goes directly from Wagoga
to Sydney now and it's sort of four or five
hour drive. But back in the nineteen eighties, It was
(14:28):
a solid eight hour drive on not a great road
and it was pretty tricky. Luckily, my mum grew up
in Sydney and had a lot of family there, so
we had some great places to stay when we did go,
but the travel was certainly a big part of it.
And if there's a medical emergency, you need to be
(14:48):
airlifted out. So I had my first air ambulance ride
when I was three days old, and then the next
one when I was eighteen years old, because they just
didn't have the hospital capability to look after me once
I start. I added growing up and going to primary school.
We were very fortunate that some of the Sydney cardiologists
would travel down to Wogga Woga, So I always remember
(15:13):
my parents taking me to the appointment and Mum would
have written down on a list everything she wanted to
ask because she knew she had fifteen twenty minutes with
the specialist. I remember one time we walked in and
the doctor just grabbed a list of her and started
answering all the questions. He was prepared. It had to
be really prepared living in a regional area. And the
(15:36):
other really big thing was school. Being at school in
Wogga woga. They were absolutely fantastic for me. There was
a lot of accommodations, made huge amount of support, but
there was no one else at school who had serious
health condition like I did. I'm sure there were other
people who had health conditions, but nobody had contender heart disease.
(15:58):
I didn't meet anyone in my town for decades with
congenderal heart disease, So in a way, it's a little
bit lonely. And there was no Facebook community groups, they
would need none of that, Yeah, so it was quite isolating.
It is.
Speaker 2 (16:14):
It's interesting to hear you because everything you're saying, I'm like,
that's exactly what'sposed to do. Yeah, And it'd in a
small town in Texas, and the hospital was three hours away,
which seemed huge. I can't imagine eight hours. Eight hours
and the concern of what if something does happen, and
time is of the essence a lot of the things
(16:36):
that you're talking about. We faced the same kinds of problems,
but you were a decade earlier, so I know it
must have been even harder for you. I would love
to meet your parents. It sounds like they're amazing advocates
for you, especially your mom. I always had a legal
pad too.
Speaker 1 (16:52):
Which there is something very special about hot moms. Honestly,
you can see them coming a mile away, and they
are very articulate how to fight for their kid and
pop moms are very special talk of herthing.
Speaker 2 (17:05):
Thank you for saying that, But you are not only
a HD survivor, but you've also been advocating and helping
others to understand the importance of care when they're born
with the cogital heart defect. I love what you said
about pretty much assuming you were fixed. Before I became
a mom, I was a teacher of the deaf and
heart of hearing, and when I taught in a regional
(17:27):
day school program, those students had never seen an adult
with a hearing impairment, so they all assumed that when
they turned eighteen they would be able to hear, which
seems ludicrous to say it out loud, but they had
never seen the deaf adults. When I started teaching at
the school for the Deaf, where there were deaf teachers
and deaf janitors and deaf people working in the cafeteria,
(17:50):
it was such an eye opening experience for the students
to realize when I grow up I'm still going to
be dead. And it's the same thing for you all
with heart defects, where so many of you had never
seen an adult with a congenital heart defect, and many
of you back in the eighties especially, and even in
the nineties, we're told you were fixed. So it must
(18:12):
be quite a shock for a lot of people to
realize no, no, no, this is a lifelong condition. Tell
me about how the Australian approach to HD care is special.
Speaker 1 (18:25):
It is really quite unique in Australia how we're sent out.
I think it's because Australia is so dispersed. We've only
got about twenty seven million people in Australia compared to
the US as three hundred and fifty million, so we're
really quite small and very tight knits. All the medical
professionals know each other quite well. A lot of the
(18:46):
parents and patients now know each other and there's some
really great ways to connect and make those friendships in Australia.
One of the most unique things that has come out
in the last couple of years is the new standards
of care for childhood on set heart disease. So I
was part of developing those with doctor Nadine Casperi and
(19:08):
who's now over in the US in Cincinnati doing an
amazing job, and she led the development of the world's
first mental health and neurodevelopmental standards and being part of
those discussions around mental health and neurodevelopmental conditions that can
also come with HD was really fascinating for me. But
(19:28):
on a personal level, I had to really reflect on
what did that mean for me and how does that work.
But in Australia, when I sat down in all of
those forums, you know people and you would be able
to connect with people in a very intimate way, whereas
I think in much larger countries it's hard to know
(19:49):
everyone and who's who. One of the comments that came
from the politicians that were supporting US developing national standards
of care and a National Action Plan or Childhood non
heart Disease was that it's unbelievable how united and tight
knit the congenderal heart disease community is, because I think
(20:10):
it can be commonplace where there's competition or there's different views,
whereas in Australia it is such a united front moving
forward to get the support that everybody needs across the country.
It's fantastic.
Speaker 2 (20:24):
I absolutely love that, and you're right here. In the
United States, especially in the eighties, it seems like there
was a lot of competition around who could save people
with complex conditions. First, there was this huge team in
California and La Melinda that was just convinced that transplant
was the way to go, that was what was going
(20:45):
to be the saving grace. And then there was this
whole other group on the East Coast at Boston Children's Hospital,
and doctor Norwood led the charge for this, although he
wasn't the only one, but he has a surgery named
after him, so it makes him s oubt, but he's
the one who came up with the idea of no,
we need to do staged procedures and this is the
(21:08):
way we're going to handle it. So it really did
feel like there was competition. It's really cool that now,
thirty years later, I'm seeing that our cardiologists, our cardiothoracic
surgeons are much more united and we don't have the
same kind of standards of care that you're talking about.
That's national, but I would like to think that maybe
(21:29):
we're starting to move that way. I know doctor Gail
Wronofsky has been instrumental in helping to create that whole
sea knock the cardiac and our developmental you're familiar with
this name, good, Yeah, and that's.
Speaker 1 (21:44):
The one I went to last year. It was fantastic.
Speaker 2 (21:46):
Oh, he's just amazing. He is absolutely amazing, and he
was at the forefront of recognizing that there's a huge
neurological component. We can't ignore the heart brain connection. And
I've loved how it has taken time, but these kinds
of things do. The first step was to get patients
to survive, and then now that they are surviving, it's like, okay, well,
(22:09):
now how can we improve the quality of life? And
there's been a huge movement in the last decade especially
what's been lovely is it really has been more of
a concerted effort. But you're right, we do have a
lot of people and we are spread for our part,
and that doesn't always lend itself to having national standards
of care. And now that Scotland has been involved, do
(22:31):
you know doctor Lisa Morton?
Speaker 1 (22:34):
Oh, yes, I have heard of her and her wonderful book.
Speaker 2 (22:37):
Yes, she has a wonderful book. She has been instrumental
in DOY research and also pushing for national standards of
care in Scotland. Just like you here, she is an
adult who was born with goojadal heart defect and she
has gone before her politicians to get something in place
for all people. Now, Scotland's a lot smaller in the
United States or Australia, but when you have different countries
(23:01):
that are taking the lead, it's that's a precedent that
may sell a little bit easier for other countries to
follow suit.
Speaker 1 (23:08):
Absolutely, and I think even though the United States would
be a struggle to get national standards, one of the
key things that have really helped us, I think globally
even was the American Heart Association statements on THHD and
mental health and neuron diversity. I think that's made a
(23:28):
huge difference globally, pulling together all the research and putting
it forward in those statements that a lot of countries
now being able to leverage that to be able to
drive their own standards and research as well. I love that.
Speaker 2 (23:42):
I really feel that there are so many different problems
that children can be born with. But I have felt
blessed that the people working in the field of cardiology
or cardiothoracic surgery that they've put the patients first, and
they're not even has anymore to pick up the phone
and call somebody at another institution and say, I have
(24:04):
this kid present you with this and what do you
think of that they do video conferencing. You flew all
the way here to learn about the different connections between
heart and neurology, and I think it's outstanding that there
are these opportunities for us to teach and learn from
one another.
Speaker 1 (24:24):
Yeah, the global community on HD is really unique, and
I know that there's a lot of congenital conditions around
the world, but the congenital heart community is one that
really comes together globally and it's really quite a special
experience to be part of anything that is done domestically
but also globally.
Speaker 2 (24:44):
Before we end this segment, I have to ask you
about the mental health of families living with chronic illnesses,
because we can both attest to the fact that this
does affect the families mental health. Can you share with
me some of the changes that you have experienced in area.
Speaker 1 (25:02):
Yeah, I think it's really taken on a new perspective
over the last few years. And when I attended Zenoch
last year, making sure that the views of parents and
siblings was taken into consideration was really quite special and
I think something that needs to be done more and more.
(25:22):
I think that as we evolve and now have more
adults than children with congenderal heart disease, one of the
things that we need to also look at is partners,
and then when people have their own children, one person
we SEHD in the household can really change things and
can really impact everyone in the whole house. Obviously, as
a person we SEHD, we don't want that for anyone
(25:44):
around us, but in reality, that's how it is. So
as we keep bringing in more resources to support parents
and siblings, I think we need to then take it
that next step further. For the adults who have partners
and children of their own, I think that's really important.
I think families living with someone who has a chronic
(26:04):
illness need to lean into the new resources that are
now available in the digital age. There's so many online
chat groups. I've seen dads with kids with CHD. There's mums,
there's also parents groups, and then for people like me
as an adult with CHD, tapping into those international resources
is fantastic. So I'm part of the American Zippersisters Club
(26:26):
on Facebook, and it makes a huge difference for me
having not just a few hundred people in a chat
group which is really useful in Australia, but an international
one with thousands of people. So when you have a question,
particularly as a female, and I might have a question
about periods or reproduction or after open heart surgery your
boobs go a bit weird, then these kind of really
(26:49):
female specific questions that you want to be able to ask,
that you've now got these amazing digital forums to be
able to ask. I think what of the other things
in addition to digital forums that has come an enormously
long way in mental health support is therapy and using
somatic techniques, because as someone who's bids through an enormous
(27:10):
amount of medical treatment as a child, how that resurfaces
as an adult can really surprise me at times. And
working with the trauma therapist and developing a toolkit of
somatic techniques and then other techniques has made a huge
shift for me. But I think also for the parents
and the siblings who grew up in that household having
(27:32):
to watch their sibling or their child go through some
really difficult medical procedures. I think some of that therapy
and that support really can help them as well to
move forward, but also try and accept some of the
big feelings that might come with remembering those experiences.
Speaker 5 (27:52):
Embark on our heartwarming odyssey with Baby Heart's Pressure gateway
to uplifting stories for the CHD community. Introducing the Heart
of a Heart Warrior book series, inspiring those born with
heart effects and their loved ones discover the heart of
a mother, the heart of a father.
Speaker 1 (28:08):
And my brother Needs an Operation.
Speaker 5 (28:10):
Books celebrating strength, love and familiar support. Is it Baby
Heartspress dot com and be part of our loving community
uplifting hearts one story.
Speaker 4 (28:20):
At a time.
Speaker 3 (28:24):
You are listening to Heart to Heart with Anna. If
you have a question or comment that you would like
to addressed on our show, please send an email to
Anna Juworski at Anna at Heart to Heart with Anna
dot com. That's Anna at Heart to Heart with Anna
dot com. Now back to Heart to Heart with Anna.
Speaker 1 (28:46):
Elle.
Speaker 2 (28:47):
I understand that you recently visited the United States and
you said you came here for SAC Can you share
with me some insights that you've gained about your own
healthcare program after visiting the United States?
Speaker 1 (29:00):
Yes, I came in September last year and I attended
Sekinock and then I went to Cincinnati to their Heart
and Mind well Being Center, and I absolutely loved it.
I learned so much, but also got to share the
Australian perspective and some of my personal stories. At ze Knock,
they had a preceding day of the conference that was
specifically about adults with congenital heart disease, and I kicked
(29:24):
off and ignittook where I was talking about medical trauma
and the medical experiences and long term impacts of that
into adulthood with congenital heart disease, and I think it
was really well received and the audience was absolutely fantastic.
Then I stayed the next few days and got to
learn so much and participate in a lot of the
(29:45):
conversations that keep moving forward this really special aspect of
living with congenital heart disease. When I finished there, I
hopped over to Cincinnati and got to do a private
tour and speak to a really lovely audience of peace
Full in Cincinnati with congender heart disease and learn what
they're creating with the Heart and Mind Well Being Center.
(30:07):
It's really unique. We don't have anything like that in Australia.
We certainly have some great resources in the pediatric area
in Australia, but we don't necessarily have them for the
adults as well as set up as the Heart and
Mind well Being Center. It's fantastic. I think some of
the insights that I gained were particularly around the demographics.
(30:28):
In the US there's about three and fifty million people,
and about one percent of those or if you think
about the one in one hundred with COCHD, that's about
three and a half million, which is about thirteen times
more than in Australia. So with thirteen times more population,
there's so much more resources there. And it's absolutely incredible
(30:51):
what the United States has pulled together state by state,
big city by a big city, and then in the
regional and rural and remote areas. When I was sitting
through Ceno and looking at a lot of the research,
America has much larger Hispanic population and other minority groups
as well, compared to Australia, whereas we focus a lot
on Aboriginal tour Australia islander health. So looking at that
(31:15):
perspective and how that impacts and shapes the types of
care that is developed and then delivered across the country
was really interesting. The other really interesting thing that I
absolutely loved being a complete policy nerd was talking to
people about how the health insurance systems work, Obamacare, Medicaid
(31:36):
and other things. I had a fantastic chat with Curisa
Ostrom from Conquering COHD. Having worked in Australian policy for
a number of years now, I really got to understand
and ask some detailed questions about health insurance and how
it's attached to your employment and your job in the
United States, where it's not the case in Australia. We
(31:58):
also talked about Obamacare and then Medicaid. We have Medicare
and it covers quite a significant proportion, and our health
insurance is standalone and we can choose to pay for
that ourselves or not, and there's different types of incentives
to encourage Australians to get their own private health insurance.
So that was really fascinating to understand how that operates
(32:19):
in the United States. And having worked at Parliament House
in Australia, which is like Congress in America, I was
truly fascinated with the Congenital Heart Futures Authorization Act of
twenty twenty four and I had a great conversation with
people about how the legislation and the funding comes about
in the United States and then how it's distributed in Australia.
(32:41):
The Minister's in Parliament decided, through some lobbying, to develop
a National Action Plan for childhood onset heart disease. Was
a united effort by the community, led by Heart Kids
Australia and moving forward seeking funding underneath that in applying
for grants through the government and is a completely different
process than the Reauthorization Act that happens in the United
(33:05):
States and the process that you all need to go
through to secure that funding. I found that truly fascinating.
The only other really big difference that I noticed from
the United States to Australia is that in the United
States you have the Adult Congenital Heart Association, and you
also have amazing centers like the Heart and Mind well
Being Center in Cincinnati. We don't have those types of
(33:28):
things in Australia. We certainly have Heart Kids Australia, which
is incredible, but a dedicated adult congenital heart organization doesn't
exist in Australia. I was well aware of AHA before
I traveled over there. I had used many of their
resources before, but just to meet people and understand the
back end of how it was set up and the
(33:48):
different kinds of advocacy work it does was absolutely inspiring
and so fascinating.
Speaker 2 (33:55):
I am amazed that you don't have any kind of
adult CCHD organization. I know in Canada they have Gooch
grown Up with congenital heart disease, and I think they
have something similar to that in Britain, so I'm really
surprised they don't have anything like that in Australia. Maybe
(34:15):
you can spearhead that mail like you don't have enough
plate already.
Speaker 1 (34:23):
Definitely cross my mind. But there's definitely organizations that support
adults with congenital heart disease. For example, hot Kins does
an amazing job. They'll have information sessions, they have their
own podcasts, they have other things that are really fantastic resources.
And there is the Australian Heart Association which does have
(34:43):
some resources for younger adults. They're thinking between eighteen and
sort of fifty five ish and they will have resources,
but it's not specifically for people with congenital heart disease.
Then there are Facebook community groups there is Australians with
congenital heart disease. Then there's an Aussie Zipper Club as well,
which is great, but that's a mix of people as
(35:04):
well that might just have a zipper for other reasons
than contender heart disease. So it's not to say that
there are no resources, but there isn't a standalone one
that is like AHA, which is just incredible. I'm very
impressed with them.
Speaker 2 (35:19):
It is a really incredible organizations. I've been fortunate enough
to meet the people who founded it and appearance of
the people who founded it many years ago, and it's
an inspiration to me. How they came from a small
handful of people who said we need to do something
to what it is today. No small feat ol. It
has been years and years in the growing and changing
(35:42):
and moving with the times and now the lobbying that
they do. When they first started out, they didn't do
as much of the lobbying as they do now. I
have even joined in Washington, d C. For their lobby
Day to go and talk to my congressman where the
Congatal Heart Futures Act because it was so so important.
We had people who flew from all over the United
(36:03):
States to be in Washington, and the ACHA organized everything.
They gave us training. They told us what to say
or I shouldn't say. They told us what to say.
They told us to share our own stories, that is
the most critical thing. But they told us what the
bill was, how we could encourage the congressman to support
(36:23):
what it was that we needed. It was quite an
education for me. I had never been to the US
capital to do something like that before, but it gave
me enough confidence that later I have been to my
state capital to do some lobbying for Pulse oxymmetry and
for some other things. For the general Art Defect Awareness Week,
(36:45):
I went to my state capital for that as well.
I think it's great that they come together and they
guide you on how to do this and show you
one voice can make a difference.
Speaker 1 (36:57):
Absolutely absolutely, I think that training is so invaluable because
our political system is different, the lobbying and the way
it's set up is different as well. The leaders of
that in Australia is Heart Kids and some of the
key clinicians and some of the key advocates in the community,
and it's been very effective. But as for going into
(37:18):
the states and territories or to see your local member.
I think that's something that we're still building towards.
Speaker 2 (37:25):
I'm sure there are other adults with congeneral heart effects
in Australia now who think maybe I need to get
involved in lobbying. How would they get started?
Speaker 1 (37:35):
Well, I kind of fell into it. So I was
very fortunate. I was finishing a job at Parliament House
as a ministerial advisor, which I think would be similar
to being an advisor to a senator in your Congress,
and I'd been doing that for a couple of years
and was stepping down out of the role. I saw
(37:56):
my cardiologist one day for an annual checkup and he said, oh,
you might be good for the National Action Plan and
I was like, I'm trying to wake you're talking about.
He said, o'h. Let me introduce you to the CEO
of Heart Kids. This is in twenty eighteen I think,
and got to meet him and he said, yeah, that's great.
You've got a mix of I understand the national policy,
(38:16):
I understood the political landscape and I had the personal experience.
So I was thirty four years old and got to
be on the National Steering Committee and then part of
the working groups to develop the National Action Plan and
then the Standards of Care as well, which was fantastic.
But I really did kind of fall into it and
was just fortunate to have that unique mix of skills
(38:39):
and lived in Canberra and understood how politics worked and
how policy was developed, so I was able to contribute
that as well as my own personal experience. So after
I was part of that process, I applied to be
part of the board of Heart Kids and was on
the board for a term and a half until I
stepped off to launch at All Well. And that had
(39:01):
been a complete eye opener experience. When I joined the
National Action Plan groups, I hadn't really met that many
people with congeneral heart disease. I was thirty four, and
I think I'd met a handful of people like four
or five maybe as an adult. And sitting there then
talking about the needs of an entire community, that, to
(39:23):
be honest and you really know, was quite overwhelming and
really made me reassess my identity because for such a
long time I had still been ignoring my congeneral heart disease.
It was this thing on the side, not a big deal,
don't want to talk about it, nothing to see here,
(39:44):
and then I had to change my identity to really
think about where does congenital heart disease fit in with
that because I had tried for so many years to
be fit healthy, career driven, really wanting to achieve well.
I don't want to be seen as the sick girl
in the workplace. I don't want to be seen as
(40:05):
the weak link in a team. It was quite confronting
for me. So having to go through that process of
relearning and understanding where PhD fit into my persona and
what I wanted it to be took a few years, really,
and some of the conversations and learning how other people's
experiences is quite confronting sometimes, so understanding how their experience
(40:30):
was theirs and what mine was was mine and sort
of not taking it on too much was also something
I had to learn. So if people are interested in
doing advocacy, I highly recommend it, but I would start
by meeting a few other people in the community who
you can share your story with, you can hear their
story and you can bring that into anything that you
(40:53):
want to speak about, and then reaching out to organizations
that you're interested in working with directly is a great
way to raise awareness and start doing some advocacy work.
And advocacy work might not be going up to Parliament
House and talking about a national standard of care. Maybe
it might be something like putting on a community barbecue
(41:15):
where you can start having conversations and bringing people together
and raising awareness of congenderal heart disease and just connecting
people that are more than enough.
Speaker 2 (41:25):
That's a great way to get started, even just being
on Facebook and getting involved with some of the groups
that way. I agree it's too overwhelming to say, oh,
I'm just going to go to the Capital today lobby
by oh Grossmith. It's very daunting. So definitely to join
in with a group to find out where your story
fits in with other people's stories and how you can
(41:48):
work in a united front. I think that gives you
a much better opportunity for success. Not that one voice
doesn't matter, It really does, and it's amazing what one
person can do. But I think I think that their
strength and unity.
Speaker 1 (42:03):
Absolutely And I think when I was on the board
of Heart Kids, I was one of the youngest people
on the board, and I was one of a couple
of people who were adults with congenital heart disease. I
thought one of my key roles was to really listen
to the community and bring their views to the board
and speak for my community that I understood. So I
(42:25):
really did try and make an effort to get into
those community groups on Facebook and meet people and try
and understand the different versions of CDHD and the impact
that it had on different adults and their life, their career,
and how their life trajectory changed and went up and
down as people went along in their lives with congenital
(42:46):
heart disease and be able to bring that to the
board or be able to bring that to the National
Action Plan or the standards of Terre. So it wasn't
just my view and that was really important for me.
Speaker 2 (42:59):
Yeah, I love that. So it's almost like you were
the mouthpiece for all of those people.
Speaker 1 (43:05):
I tried to pull together many of that could. I
love it, and nothing beats their own personal story.
Speaker 2 (43:11):
That's true, but not everybody has the opportunity that you
were afforded, and it's really nice to know that you
felt comfortable sharing all of those stories. I find out
a lot of the people I reach out to feel
too shy or they don't have the confidence. This definitely
does take some confidence to get up in front of
(43:34):
people and to share something as personal and emotional as
what we've been through, don't you think.
Speaker 1 (43:39):
El I do. But I think maybe I'm just oblivious too,
And I hope that I love to talk, so maybe
that's just a bit easier inteading I mean people and
they're too shy to do it. I'm like, what you're
just gonna You're just talking? Oh wait, no, I like that,
ell you need to. So I deliberately tried to find
(44:00):
shy people to get their stories and make sure I
shape it the right way, advocate for them how they want.
Speaker 2 (44:06):
I love the we need extroverts like you, because that's
beautiful that you don't have any problem with that. And
you're showing me today how articulate you are and how
confident you are to talk about an unusual circumstance. But
it's not unusual to you because it's the way you
were born, so you don't look at it as unusual.
And that's what my daughter says to me all the time, too,
(44:28):
is mom, this is just the way I am. It
would be like feeling like you're unusual because you have
brown eyes. Some people have brown eyes. Some people have
heard you drive me different. Yeah, exactly. You have written
a book to help others, not with heart disease, but
with chronic illnesses, and I found that really interesting. Can
you tell me why you wrote your book and how
(44:48):
long it took you?
Speaker 3 (44:50):
Yeah?
Speaker 2 (44:51):
Sure.
Speaker 1 (44:51):
I wrote a book called Your Ultimate Surgery Success Guide,
and I wrote it because I've been through five open
heart surgeries. I would meet people, whether they were having
open heart surgery or major cancer removal surgery, or even
a hysterectomy or some kind of major surgery. I would
have all these tips for them, and I didn't want
(45:13):
to overwhelm them. Then I thought, how can I put
this together to try and help people. Quite a few
years ago, two THEOUM seventeen, I decided to write a
blog called Tips and Tricks from a Pro for open
Heart Surgery and it went on the Hat Kids' website
and they told me that it was one of the
most clicked on sites on their whole website, which was fantastic.
(45:37):
And it went for about three pages, and I thought, yeah, okay,
I put a lot into this. This is really helpful.
But then I kept thinking, no, this is really just
the tip of the aspect. There's very much more to
major surgery. So I decided to take some time off
work and sit down and pen the book to really
(45:58):
try and capture everything and help you people and bring
together ractical things. When I had my fifth open heart surgery,
I googled it and looked at blogs and fact sheets
and things like that, and got to the point where
when I was reading them thought, hey, on a minute, no,
you're missing this. Oh you need to add that in here.
And it finally dawned on me that I actually knew
(46:19):
a lot more than I anticipated it and I didn't
need the fact sheets. I could write it myself, and
I very humbly thought I could do a bit job.
So I down and wrote the book. And things that
people really struggle with as finances. It's expensive going in
for major surgery, even with Medicare and Australia right there's
(46:42):
a lot of intarbements that people don't understand that they
can access in Australia and even in the US, I'm sure,
so I put in all the budget strategies. The other
thing that I realized, just as an adult, I have
to still navigate a career while taking effectively a sabbatical
to have major surgery. So there's a whole chapter on
(47:05):
workplace tactics, how do you talk to your supervisor? What
lever are you entitled to? How do you figure all
of this out? It even includes a script on how
you can talk to your supervisor and approach that conversation,
because that's one of the key things that I fell
down with When I was twenty one. I had no
idea how to talk to my supervisor. But when I
was thirty three, I was much better at it. And
(47:27):
it includes everything from questions to ask your surgeon, how
to choose the right hospital, how to get into a
good mindset to go in from major surgery, which is
really tricky, and all the practical ways that you can
lean into helpful resources like therapy, somatic techniques, and other
things that you might need.
Speaker 2 (47:47):
How long did it take you to write it?
Speaker 1 (47:49):
I think it took be about three months to really
sit down and smash it out, and then a couple
of months later I then spent the time to put
it into a format that I could put out there
for everyone to access, So probably about four months in total.
Speaker 2 (48:06):
That's amazing because all the things that you listed, Wow,
that's a lot of information and probably almost like people's
Bible would they hopin if they're lucky enough to find it.
So tell me where can people find your book.
Speaker 1 (48:23):
It's available worldwide exclusively on Amazon, and in the US
it's fourteen ninety nine.
Speaker 2 (48:30):
Okay, great, Wow, that's just amazing that you came up
with that. But that's not all you've done. You have
also created Adulting Well. So tell me about what adulting
Well is.
Speaker 1 (48:44):
Adulting Well is a platform to help people with any
kind of chronic illness that draws on my experience of
congenital heart disease. And there's a couple of different pillars
to Adulting Well. There's a free blog that anyone can access,
comes out weekly and you've dropped right into your mailbox.
Then I've been developing and launching some digital courses. I've
(49:06):
got one about how to build a mindset toolkit when
you've got chronic illness. What I find with myself and
speaking to a lot of people and reading the research
out there, is that because the body keeps having these symptoms,
it can get quite frustrating and you can try switch
it off, and the mindset toolkit would help you try
and reconnect that in a nice, safe way. Then I've
(49:28):
got another course on how to navigate the workplace, and
I'm currently building a course on how to navigate healthcare finances,
which will be the biggest course yet to come out.
And I do live workshops and live talks around the world,
like for example, at Sennock and Cincinnati Children's Hospital and
various other places, which I absolutely love. It's been building
(49:50):
slowly and steadily. I've got an Instagram page for Adulting Well,
Facebook page, and the website is Adultingwell dot au.
Speaker 2 (49:58):
Wow. Do you ever sleep el?
Speaker 1 (50:01):
Yeah, that's quite well. Actually these days.
Speaker 2 (50:07):
I bet you do because you're so busy. I bet
you do sleep well. You're making such a positive change
in the world. I think that's absolutely fabulous.
Speaker 1 (50:17):
Thank you very much. I think I just saw a
gap and I couldn't find what I wanted, which I
think is why people start they'reing podcasts like you and
start doing these things, is to try and fill a
gap and help people because I couldn't find when I needed.
So I'm hoping that what I'm developing will help more people.
Speaker 2 (50:38):
Absolutely, that's exactly why I started doing what I did.
I couldn't find the resources I needed. I knew they
needed to be out there. I did have some abilities
to enable me to move forward, and that's why I
did what I did. Your book sounds amazing. Friends, do
check it out on Amazon. I will put the link
(50:59):
in the show note and I put the link to
Elle's website as well, because some of you may be
interested in some of the digital courses that she has
available as well. Thank you so much for being a
guest on our program today, Elle.
Speaker 1 (51:13):
Thank you so much for having Menna. It's been an
absolute delight and I'm so glad that I got to
come on your podcast and meet you. I am too.
Speaker 2 (51:21):
I'm so thankful that my producer Meghan Tones and thank
you Megan for being by producing you today. I'm so
glad she told me about you, because she is the
one who said, oh Anna, we really need to have
el Pendrick on the program, and here you are, so
definitely big thanks to Megan. Yeah, Dan, Meghan is amazing.
Speaker 6 (51:41):
Pang. It was really interesting to listen to Ellen.
Speaker 7 (51:46):
I'm so glad we have someone with your skills in
our community.
Speaker 2 (51:51):
This has been completely delightful. I really enjoyed it. Thanks again,
Megan for being the producer and scriptwriter. Megan does a
get enough credit me again. Thank you for helping me
write the script, find the guests, and then produce the
show for me today.
Speaker 6 (52:06):
That's okay, my pleasure, no worries at all. It's been
really good to listen into the show today. I think
there's some really interesting insights there about advocacy and certainly
your experience is growing up. Were actually the.
Speaker 7 (52:25):
Same age else I can relate even though I was
in Brisbane and we've got a hospital here Prince Charles
who have been taken care of me since I was
a baby, I can definitely relate growing up and thinking
shouldn't all this be behind me now? Even my doctor
back then said, oh, you don't have to come back
(52:47):
anymore and just take you to jocks and how if
everything's fixed or I still need to joke some none
of them makes it.
Speaker 4 (52:56):
Yeah.
Speaker 2 (52:57):
Yeah, it's funny because we did a discord event with
Megan and we listened to one of the first shows
that she did with me. It was so much fun
to listen to that show because neither one of us
had listened to it in years. That concludes this episode
of Part to Heart with Anna. Thanks for listening today.
Please leave a review of our podcast or whatever platform
(53:19):
you're using to listen. This helps others in the HD
community know about the podcast. Have a great week, and remember,
my friends, you are not alone.
Speaker 3 (53:49):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Hard to Heart with Anna
with your host Anna Jaworski can be heard at any
time wherever you get your podcasts. A new episode is
released every Tuesday from noon Eastern time.
It was only then, when I went through that full
of open heart surgery and came out the other side,
that I've dedided to realize that congenital heart disease is
full life and there is no cure. Major open heart
surgery for people like me is a temporary fix.
Speaker 2 (00:24):
Welcome too Hard to Heart with Anna. I'm Anna Juworski,
mother of a thirty year old adult with a segal
vetrical heart, and your host. Today's program features a wonderful
interview with el Pendrick, an inspiring OSSI adult form with
a congenital heart effect. Elle will share how her medical
journey shaped her business and advocacy. But before we dive
(00:47):
into that, I'd like to share a little personal update
and some news. After weeks of wearing the latest removable
cast fashion, which was so scratchy I had to wear
a fingerlom's glove underneath. Far too hot for May in
Central Texas, my hand surgeon and physical therapists have given
(01:08):
me the green light to go casts free. Yes, my
formerly broken wrist is healing beautifully and I'm officially out
of my plastic and velco prison. The hardware they used
to fix broken risk these days is impressive. I might
just have bionic parts at outlast the originals. At least
that's the hope. While it's not open heart surgery, this
(01:31):
experience has given me a new appreciation for how long
it takes the body to recover after trauma. We truly
live in a golden age of medicine. So many things
can be fixed, patched up, or improved with science, patience,
and in my case, a lot of awkward one hand typing.
What stands out most is that even with modern medicine,
(01:54):
healing takes time. I'm not good as new, not yet.
Recovery requires time, therapy, and most importantly, a willingness to
rest and listen to my body. In a world that
pushes us to hustle, multitask and binge watch our way
through life, who actually.
Speaker 1 (02:14):
Makes time for healing. So here's my takeaway.
Speaker 2 (02:18):
Sometimes the bravest thing you can do is slow down,
rest and give yourself permission to recover. Whether you're healing
from surgery, heartbreak, or just a tough week. Remember, self
care isn't selfish, it's essential. And if you need an
excuse to take it easy, tell everyone your podcast friend
(02:42):
Anna said so in a few minutes you'll hear my
interview with al Pendrick. She'll share her advocacy work and
discuss mental health building on this theme of self care
and healing. Before that, let's move on to the news.
(03:04):
Global Arch is hosting a free virtual advocacy training course.
This program is designed for patient and family organization leaders
who want to advocate for early diagnosis, timely treatment, and
lifelong care for childhood onset heart conditions like congenital heart
disease and rheumatic heart disease. Whether you're new to advocacy
(03:26):
or one to strengthen your skills, this is a great
opportunity to learn, connect and lead. The course highlights four
interactive virtual sessions from July to October twenty twenty five,
mentorship from experienced advocates, and tools and strategies to lead
advocacy efforts in your community. Apply now at globalarch dot
(03:49):
org and I'll put the link into show notes. The
registration for the training closes May thirty first. If you
miss this training opportunity, check back on the Global Arch
website for future training opportunities. Next up, we'll be talking
with L. Pandrick and author advocate and adult Born with
Coples congenital heart disease in New South Wales, Australia. She
(04:12):
has an amazing story to share with us.
Speaker 3 (04:20):
Heart to Heart with Anna is a presentation of Hearts
Unite the Globe and is part of the hug podcast network.
Hearts Unite the Globe is a nonprofit organization devoted to
providing resources to the congenital heart defect community to uplift,
empower and enrich the lives of our community members. If
you would like access to free resources pertaining to the
HD community, please visit our website at www. Congenitalheartdefects dot
(04:45):
com for information about CHD, the hospitals that treat children
with HD, summer camps for HD survivors, and much much more.
Speaker 4 (04:59):
This content is it's not intended to be a substitute
for a professional medical advice, diagnosis, or treatment. The opinions
expressed in the podcast are not those of Heart to
Night the Globe, but of the hosts and guests, and
are intended to spark discussion about issues pertaining to congenital
heart disease or bereavement.
Speaker 2 (05:20):
Today's guest is el Pendrick. Elpendrick was born in nineteen
eighty three with pulmonary atresia, an intact septum and a
leiky mitrovalve. From a small town called Wagga Wagga in
New South Wales, she and her family frequently had to
travel to Sydney for care. By the time she was
eight years old, she'd lived through three open heart surgeries.
(05:43):
Two more followed at the age of twenty one and
thirty three. To date, she has had over twenty surgeries
and procedures. Ellis an author and has her own business
called Adulting Weal, a resource for helping people with chronic
health conditions. She has been a sea HD ambassador at
conferences in the United States and Australia, and is working
(06:05):
with new Australian National Standards of Care for Childhood on
set heart Disease, which showcases how Australia is advancing PhD
care with a holistic approach. Welcome to Heart to Heart
with Dana l.
Speaker 1 (06:19):
Thank you so much for having me today. Anna, I'm
so thrilled to be here.
Speaker 2 (06:25):
I'm so excited to be talking to another author. I
can't wait to get into that a little bit. But
first let's start by talking about your transition from being
seen by a pediatric cardiologist to your adult clinician. Babies
born with complex hearts in the nineteen eighties weren't expected
to live to adulthood, and I believe you may be
(06:46):
in the first cohort of survivors who made it that far.
Speaker 1 (06:50):
Yeah, I was one of the first ones to survive
into adulthood. There are very luckily a few people ahead
of me, but in the early nineteen eighties the survival
rate was not very good, and so as I progressed
through primary school and high school, it was pretty isolating experience,
and I'd had most of my open heart surgeries to
(07:13):
that date, and then once I got to high school,
I assumed that heart disease was something that I had had,
and then I no longer had it and it was
just life as normal from there. When I was eighteen,
it was my dad's fiftieth in Woggorogan, New South Wales
in Australia, and I thought I would be very cool
(07:35):
and tint some of my lovely blonde hair hot pink
to be really cool at dad's fiftieth birthday party. Do
you remember those caps in the eighties what early nineties,
the hair caps they put and then they pulled some
of your hair through to streak it. For what I
didn't realize is my lovely friend had pulled through most
of my blonde hair and streaked at hot pink. So
(07:58):
instead of having blonde hair with a few pink streaks,
I had peak hair with a few blonde streaks. So
when I got up the stairs and said, how to look,
I've got my hair done for your party, they were
not very impressed. And as the night wore on, we
had a great time and we hit the local nightclubs
in Wa Wag. I was eighteen, and I was really
(08:22):
struggling to get out on the dance floor. I was
kind of good for one dance, and then I'd get
to a point where I just was so breathless i
had to sit down, and then I would do some
chair dancing, and then I would think, oh, it's a
great song. That was back in the nineties, so many
great songs get out there on the dance floor, and
then I would run out of steing very quickly. So
(08:42):
once I got home, I kind of crashed and fell
asleep and thought nothing of it really until the next
day when I was really not feeling well and I
had some chest pains and shortness of breath and called
out to my parents and I really don't feel good,
and proceeded to pass out almost so they yeah, and
they carried me down to the car and threw up
(09:04):
in the garden on the way, and we got down
to the local hospital in Regional New South Wales, and
as they did in the nineties, they pulled out my
massive paper file because they knew me quite well. Down there,
they said, oh, okay, you've got some very serious heart
condition issues. And the nurses came in in the emergency
room because I went straight through with my chest pains,
(09:24):
and my mum was there with me and dad, and
they said what drugs did you take? And I was
just eighteen, and I said I didn't take any drugs.
And obviously I'm sitting there with hot pink care and
very gray, very pale, low pulsephra, not feeling well, and
they're like, oh, we can't help you unless you tell
us what drugs you took. I said, I didn't take
any drugs, and then they asked my parents to leave
(09:47):
and asked the same questions but more forcefully. They let
my parents back in and mom said, well, what they
asked and I said, oh, they asked. Mum had a
good chuckle at that. The nurse said, oh, you guys
still talk about this stuff for like, yeah, like medical
stuff is very common for us. It's not anything to
hide or be ashamed of. I'm not going to lie
(10:08):
to you. They said, Oh, you'd be surprised how many
eighteen year olds don't have that experience. And I got oh, okay.
And then the next couple of days I graduated from
the emergency room onto a ward and they found out
that I had set to seema and pericarditis, and sept
to seema is a blood infection and pericarditis is inflammation
(10:28):
of the muscle around the heart. So being inn a
regional area, they said, we don't have the capacity to
treat you properly. Here. I'm just getting onto an air
ambulance flying up to Sydney, And because I was eighteen,
none of my parents were allowed to come with me,
so I was alone. And that was the first time
I got unloaded with the ambulance onto the street front
(10:52):
of a major Sydney hospital with no family and no
one there as they wheeled me onto the adult cardiology ward,
the first time I had ever set foot on one,
they shoved a clipboard at me and said, oh, you
need a central line signed here. Do you have health insurance?
What's your Medicare number? I didn't know the answer to
any of that, sure, and I just looked at them
(11:14):
very blankly, and the lady just tapped and was like,
just sign here. And I was like, I don't even
know what I'm signing for. Sure, Okay, here you go,
and went in and had their central line put in
and stayed a couple of weeks. By the time my
family arrived, I was pretty upset. The central line process
was not fun, and I felt really alone and it
was really hard. So obviously survived that after a few weeks.
(11:36):
It really didn't occur to me that congenital heart disease
was for life and there actually is no cure. I
just thought that little joy ride to hospital when I
was eighteen was just something that had happened, that was abnormal,
and that was it. When I was twenty one and
they said I needed a fourth oken heart surgery, it
(11:57):
was a real shock to me. And it was only
then when I went through that fourth open heart surgery
and came out the other side that if darded to
realize that congeneral heart disease is full life and there
is no cure. Major open heart surgery for people like
me is a temporary fit.
Speaker 2 (12:14):
Yeah, okay, so I have to know did getting your
hair dyed have anything to do with the episode that
you have?
Speaker 4 (12:23):
Now?
Speaker 1 (12:23):
They don't know where I got it from, so s
to see me really weird, very common. Yeah it was
really weird, but yeah I looked very cool in all
my hospital photos from that trip.
Speaker 2 (12:36):
You hate to think of hair dye doing something like
that to you, but it seems like that was the
most radical thing that you did right before your episode.
So you have to wonder if there's a causal link.
Did they ask you did you just get your hair
dyed or what have you done different?
Speaker 1 (12:55):
Or they did ask all those questions and the hair
dyed they did rule that out. There's lots of different
ways you can transmit sept to see MEA and we thought, okay,
it's pretty rare. It's not that common for it to
just spring up on people, but when it does, it
can be very serious. And I was sitting at the
hospital that a week into being in Sydney, and my
(13:21):
dad was reading the newspaper and he said, oh, this
woman on the front page had sept to seema and
then he was reading He's like, she didn't make it,
and I was like, awesome to th extent.
Speaker 2 (13:31):
Oh my god, Yeah, Dad, you maybe you shouldn't have
said that outline world.
Speaker 1 (13:35):
Oh do fine. I was like, okay. To be honest,
looking back, it didn't really face me at the time
because I think I was just so sick. I was like, oh, okay, whatever.
But yeah, looking back, I'm just like, that's pretty serious.
Yes it is.
Speaker 2 (13:49):
You are a complex patient and you've undergone so many
open heart surgeries and procedures. Can you tell us about
some of the specific challenges that you have faced growing
up with such a rare condition as such a small
town in Australia.
Speaker 1 (14:04):
I think one of the biggest challenges living in regional
Australia is the amount of medical care that you can
get with conflicts con general heart disease. They don't have
their capability to do all your treatment there right or
There's a lovely new highway that goes directly from Wagoga
to Sydney now and it's sort of four or five
hour drive. But back in the nineteen eighties, It was
(14:28):
a solid eight hour drive on not a great road
and it was pretty tricky. Luckily, my mum grew up
in Sydney and had a lot of family there, so
we had some great places to stay when we did go,
but the travel was certainly a big part of it.
And if there's a medical emergency, you need to be
(14:48):
airlifted out. So I had my first air ambulance ride
when I was three days old, and then the next
one when I was eighteen years old, because they just
didn't have the hospital capability to look after me once
I start. I added growing up and going to primary school.
We were very fortunate that some of the Sydney cardiologists
would travel down to Wogga Woga, So I always remember
(15:13):
my parents taking me to the appointment and Mum would
have written down on a list everything she wanted to
ask because she knew she had fifteen twenty minutes with
the specialist. I remember one time we walked in and
the doctor just grabbed a list of her and started
answering all the questions. He was prepared. It had to
be really prepared living in a regional area. And the
(15:36):
other really big thing was school. Being at school in
Wogga woga. They were absolutely fantastic for me. There was
a lot of accommodations, made huge amount of support, but
there was no one else at school who had serious
health condition like I did. I'm sure there were other
people who had health conditions, but nobody had contender heart disease.
(15:58):
I didn't meet anyone in my town for decades with
congenderal heart disease, So in a way, it's a little
bit lonely. And there was no Facebook community groups, they
would need none of that, Yeah, so it was quite isolating.
It is.
Speaker 2 (16:14):
It's interesting to hear you because everything you're saying, I'm like,
that's exactly what'sposed to do. Yeah, And it'd in a
small town in Texas, and the hospital was three hours away,
which seemed huge. I can't imagine eight hours. Eight hours
and the concern of what if something does happen, and
time is of the essence a lot of the things
(16:36):
that you're talking about. We faced the same kinds of problems,
but you were a decade earlier, so I know it
must have been even harder for you. I would love
to meet your parents. It sounds like they're amazing advocates
for you, especially your mom. I always had a legal
pad too.
Speaker 1 (16:52):
Which there is something very special about hot moms. Honestly,
you can see them coming a mile away, and they
are very articulate how to fight for their kid and
pop moms are very special talk of herthing.
Speaker 2 (17:05):
Thank you for saying that, But you are not only
a HD survivor, but you've also been advocating and helping
others to understand the importance of care when they're born
with the cogital heart defect. I love what you said
about pretty much assuming you were fixed. Before I became
a mom, I was a teacher of the deaf and
heart of hearing, and when I taught in a regional
(17:27):
day school program, those students had never seen an adult
with a hearing impairment, so they all assumed that when
they turned eighteen they would be able to hear, which
seems ludicrous to say it out loud, but they had
never seen the deaf adults. When I started teaching at
the school for the Deaf, where there were deaf teachers
and deaf janitors and deaf people working in the cafeteria,
(17:50):
it was such an eye opening experience for the students
to realize when I grow up I'm still going to
be dead. And it's the same thing for you all
with heart defects, where so many of you had never
seen an adult with a congenital heart defect, and many
of you back in the eighties especially, and even in
the nineties, we're told you were fixed. So it must
(18:12):
be quite a shock for a lot of people to
realize no, no, no, this is a lifelong condition. Tell
me about how the Australian approach to HD care is special.
Speaker 1 (18:25):
It is really quite unique in Australia how we're sent out.
I think it's because Australia is so dispersed. We've only
got about twenty seven million people in Australia compared to
the US as three hundred and fifty million, so we're
really quite small and very tight knits. All the medical
professionals know each other quite well. A lot of the
(18:46):
parents and patients now know each other and there's some
really great ways to connect and make those friendships in Australia.
One of the most unique things that has come out
in the last couple of years is the new standards
of care for childhood on set heart disease. So I
was part of developing those with doctor Nadine Casperi and
(19:08):
who's now over in the US in Cincinnati doing an
amazing job, and she led the development of the world's
first mental health and neurodevelopmental standards and being part of
those discussions around mental health and neurodevelopmental conditions that can
also come with HD was really fascinating for me. But
(19:28):
on a personal level, I had to really reflect on
what did that mean for me and how does that work.
But in Australia, when I sat down in all of
those forums, you know people and you would be able
to connect with people in a very intimate way, whereas
I think in much larger countries it's hard to know
(19:49):
everyone and who's who. One of the comments that came
from the politicians that were supporting US developing national standards
of care and a National Action Plan or Childhood non
heart Disease was that it's unbelievable how united and tight
knit the congenderal heart disease community is, because I think
(20:10):
it can be commonplace where there's competition or there's different views,
whereas in Australia it is such a united front moving
forward to get the support that everybody needs across the country.
It's fantastic.
Speaker 2 (20:24):
I absolutely love that, and you're right here. In the
United States, especially in the eighties, it seems like there
was a lot of competition around who could save people
with complex conditions. First, there was this huge team in
California and La Melinda that was just convinced that transplant
was the way to go, that was what was going
(20:45):
to be the saving grace. And then there was this
whole other group on the East Coast at Boston Children's Hospital,
and doctor Norwood led the charge for this, although he
wasn't the only one, but he has a surgery named
after him, so it makes him s oubt, but he's
the one who came up with the idea of no,
we need to do staged procedures and this is the
(21:08):
way we're going to handle it. So it really did
feel like there was competition. It's really cool that now,
thirty years later, I'm seeing that our cardiologists, our cardiothoracic
surgeons are much more united and we don't have the
same kind of standards of care that you're talking about.
That's national, but I would like to think that maybe
(21:29):
we're starting to move that way. I know doctor Gail
Wronofsky has been instrumental in helping to create that whole
sea knock the cardiac and our developmental you're familiar with
this name, good, Yeah, and that's.
Speaker 1 (21:44):
The one I went to last year. It was fantastic.
Speaker 2 (21:46):
Oh, he's just amazing. He is absolutely amazing, and he
was at the forefront of recognizing that there's a huge
neurological component. We can't ignore the heart brain connection. And
I've loved how it has taken time, but these kinds
of things do. The first step was to get patients
to survive, and then now that they are surviving, it's like, okay, well,
(22:09):
now how can we improve the quality of life? And
there's been a huge movement in the last decade especially
what's been lovely is it really has been more of
a concerted effort. But you're right, we do have a
lot of people and we are spread for our part,
and that doesn't always lend itself to having national standards
of care. And now that Scotland has been involved, do
(22:31):
you know doctor Lisa Morton?
Speaker 1 (22:34):
Oh, yes, I have heard of her and her wonderful book.
Speaker 2 (22:37):
Yes, she has a wonderful book. She has been instrumental
in DOY research and also pushing for national standards of
care in Scotland. Just like you here, she is an
adult who was born with goojadal heart defect and she
has gone before her politicians to get something in place
for all people. Now, Scotland's a lot smaller in the
United States or Australia, but when you have different countries
(23:01):
that are taking the lead, it's that's a precedent that
may sell a little bit easier for other countries to
follow suit.
Speaker 1 (23:08):
Absolutely, and I think even though the United States would
be a struggle to get national standards, one of the
key things that have really helped us, I think globally
even was the American Heart Association statements on THHD and
mental health and neuron diversity. I think that's made a
(23:28):
huge difference globally, pulling together all the research and putting
it forward in those statements that a lot of countries
now being able to leverage that to be able to
drive their own standards and research as well. I love that.
Speaker 2 (23:42):
I really feel that there are so many different problems
that children can be born with. But I have felt
blessed that the people working in the field of cardiology
or cardiothoracic surgery that they've put the patients first, and
they're not even has anymore to pick up the phone
and call somebody at another institution and say, I have
(24:04):
this kid present you with this and what do you
think of that they do video conferencing. You flew all
the way here to learn about the different connections between
heart and neurology, and I think it's outstanding that there
are these opportunities for us to teach and learn from
one another.
Speaker 1 (24:24):
Yeah, the global community on HD is really unique, and
I know that there's a lot of congenital conditions around
the world, but the congenital heart community is one that
really comes together globally and it's really quite a special
experience to be part of anything that is done domestically
but also globally.
Speaker 2 (24:44):
Before we end this segment, I have to ask you
about the mental health of families living with chronic illnesses,
because we can both attest to the fact that this
does affect the families mental health. Can you share with
me some of the changes that you have experienced in area.
Speaker 1 (25:02):
Yeah, I think it's really taken on a new perspective
over the last few years. And when I attended Zenoch
last year, making sure that the views of parents and
siblings was taken into consideration was really quite special and
I think something that needs to be done more and more.
(25:22):
I think that as we evolve and now have more
adults than children with congenderal heart disease, one of the
things that we need to also look at is partners,
and then when people have their own children, one person
we SEHD in the household can really change things and
can really impact everyone in the whole house. Obviously, as
a person we SEHD, we don't want that for anyone
(25:44):
around us, but in reality, that's how it is. So
as we keep bringing in more resources to support parents
and siblings, I think we need to then take it
that next step further. For the adults who have partners
and children of their own, I think that's really important.
I think families living with someone who has a chronic
(26:04):
illness need to lean into the new resources that are
now available in the digital age. There's so many online
chat groups. I've seen dads with kids with CHD. There's mums,
there's also parents groups, and then for people like me
as an adult with CHD, tapping into those international resources
is fantastic. So I'm part of the American Zippersisters Club
(26:26):
on Facebook, and it makes a huge difference for me
having not just a few hundred people in a chat
group which is really useful in Australia, but an international
one with thousands of people. So when you have a question,
particularly as a female, and I might have a question
about periods or reproduction or after open heart surgery your
boobs go a bit weird, then these kind of really
(26:49):
female specific questions that you want to be able to ask,
that you've now got these amazing digital forums to be
able to ask. I think what of the other things
in addition to digital forums that has come an enormously
long way in mental health support is therapy and using
somatic techniques, because as someone who's bids through an enormous
(27:10):
amount of medical treatment as a child, how that resurfaces
as an adult can really surprise me at times. And
working with the trauma therapist and developing a toolkit of
somatic techniques and then other techniques has made a huge
shift for me. But I think also for the parents
and the siblings who grew up in that household having
(27:32):
to watch their sibling or their child go through some
really difficult medical procedures. I think some of that therapy
and that support really can help them as well to
move forward, but also try and accept some of the
big feelings that might come with remembering those experiences.
Speaker 5 (27:52):
Embark on our heartwarming odyssey with Baby Heart's Pressure gateway
to uplifting stories for the CHD community. Introducing the Heart
of a Heart Warrior book series, inspiring those born with
heart effects and their loved ones discover the heart of
a mother, the heart of a father.
Speaker 1 (28:08):
And my brother Needs an Operation.
Speaker 5 (28:10):
Books celebrating strength, love and familiar support. Is it Baby
Heartspress dot com and be part of our loving community
uplifting hearts one story.
Speaker 4 (28:20):
At a time.
Speaker 3 (28:24):
You are listening to Heart to Heart with Anna. If
you have a question or comment that you would like
to addressed on our show, please send an email to
Anna Juworski at Anna at Heart to Heart with Anna
dot com. That's Anna at Heart to Heart with Anna
dot com. Now back to Heart to Heart with Anna.
Speaker 1 (28:46):
Elle.
Speaker 2 (28:47):
I understand that you recently visited the United States and
you said you came here for SAC Can you share
with me some insights that you've gained about your own
healthcare program after visiting the United States?
Speaker 1 (29:00):
Yes, I came in September last year and I attended
Sekinock and then I went to Cincinnati to their Heart
and Mind well Being Center, and I absolutely loved it.
I learned so much, but also got to share the
Australian perspective and some of my personal stories. At ze Knock,
they had a preceding day of the conference that was
specifically about adults with congenital heart disease, and I kicked
(29:24):
off and ignittook where I was talking about medical trauma
and the medical experiences and long term impacts of that
into adulthood with congenital heart disease, and I think it
was really well received and the audience was absolutely fantastic.
Then I stayed the next few days and got to
learn so much and participate in a lot of the
(29:45):
conversations that keep moving forward this really special aspect of
living with congenital heart disease. When I finished there, I
hopped over to Cincinnati and got to do a private
tour and speak to a really lovely audience of peace
Full in Cincinnati with congender heart disease and learn what
they're creating with the Heart and Mind Well Being Center.
(30:07):
It's really unique. We don't have anything like that in Australia.
We certainly have some great resources in the pediatric area
in Australia, but we don't necessarily have them for the
adults as well as set up as the Heart and
Mind well Being Center. It's fantastic. I think some of
the insights that I gained were particularly around the demographics.
(30:28):
In the US there's about three and fifty million people,
and about one percent of those or if you think
about the one in one hundred with COCHD, that's about
three and a half million, which is about thirteen times
more than in Australia. So with thirteen times more population,
there's so much more resources there. And it's absolutely incredible
(30:51):
what the United States has pulled together state by state,
big city by a big city, and then in the
regional and rural and remote areas. When I was sitting
through Ceno and looking at a lot of the research,
America has much larger Hispanic population and other minority groups
as well, compared to Australia, whereas we focus a lot
on Aboriginal tour Australia islander health. So looking at that
(31:15):
perspective and how that impacts and shapes the types of
care that is developed and then delivered across the country
was really interesting. The other really interesting thing that I
absolutely loved being a complete policy nerd was talking to
people about how the health insurance systems work, Obamacare, Medicaid
(31:36):
and other things. I had a fantastic chat with Curisa
Ostrom from Conquering COHD. Having worked in Australian policy for
a number of years now, I really got to understand
and ask some detailed questions about health insurance and how
it's attached to your employment and your job in the
United States, where it's not the case in Australia. We
(31:58):
also talked about Obamacare and then Medicaid. We have Medicare
and it covers quite a significant proportion, and our health
insurance is standalone and we can choose to pay for
that ourselves or not, and there's different types of incentives
to encourage Australians to get their own private health insurance.
So that was really fascinating to understand how that operates
(32:19):
in the United States. And having worked at Parliament House
in Australia, which is like Congress in America, I was
truly fascinated with the Congenital Heart Futures Authorization Act of
twenty twenty four and I had a great conversation with
people about how the legislation and the funding comes about
in the United States and then how it's distributed in Australia.
(32:41):
The Minister's in Parliament decided, through some lobbying, to develop
a National Action Plan for childhood onset heart disease. Was
a united effort by the community, led by Heart Kids
Australia and moving forward seeking funding underneath that in applying
for grants through the government and is a completely different
process than the Reauthorization Act that happens in the United
(33:05):
States and the process that you all need to go
through to secure that funding. I found that truly fascinating.
The only other really big difference that I noticed from
the United States to Australia is that in the United
States you have the Adult Congenital Heart Association, and you
also have amazing centers like the Heart and Mind well
Being Center in Cincinnati. We don't have those types of
(33:28):
things in Australia. We certainly have Heart Kids Australia, which
is incredible, but a dedicated adult congenital heart organization doesn't
exist in Australia. I was well aware of AHA before
I traveled over there. I had used many of their
resources before, but just to meet people and understand the
back end of how it was set up and the
(33:48):
different kinds of advocacy work it does was absolutely inspiring
and so fascinating.
Speaker 2 (33:55):
I am amazed that you don't have any kind of
adult CCHD organization. I know in Canada they have Gooch
grown Up with congenital heart disease, and I think they
have something similar to that in Britain, so I'm really
surprised they don't have anything like that in Australia. Maybe
(34:15):
you can spearhead that mail like you don't have enough
plate already.
Speaker 1 (34:23):
Definitely cross my mind. But there's definitely organizations that support
adults with congenital heart disease. For example, hot Kins does
an amazing job. They'll have information sessions, they have their
own podcasts, they have other things that are really fantastic resources.
And there is the Australian Heart Association which does have
(34:43):
some resources for younger adults. They're thinking between eighteen and
sort of fifty five ish and they will have resources,
but it's not specifically for people with congenital heart disease.
Then there are Facebook community groups there is Australians with
congenital heart disease. Then there's an Aussie Zipper Club as well,
which is great, but that's a mix of people as
(35:04):
well that might just have a zipper for other reasons
than contender heart disease. So it's not to say that
there are no resources, but there isn't a standalone one
that is like AHA, which is just incredible. I'm very
impressed with them.
Speaker 2 (35:19):
It is a really incredible organizations. I've been fortunate enough
to meet the people who founded it and appearance of
the people who founded it many years ago, and it's
an inspiration to me. How they came from a small
handful of people who said we need to do something
to what it is today. No small feat ol. It
has been years and years in the growing and changing
(35:42):
and moving with the times and now the lobbying that
they do. When they first started out, they didn't do
as much of the lobbying as they do now. I
have even joined in Washington, d C. For their lobby
Day to go and talk to my congressman where the
Congatal Heart Futures Act because it was so so important.
We had people who flew from all over the United
(36:03):
States to be in Washington, and the ACHA organized everything.
They gave us training. They told us what to say
or I shouldn't say. They told us what to say.
They told us to share our own stories, that is
the most critical thing. But they told us what the
bill was, how we could encourage the congressman to support
(36:23):
what it was that we needed. It was quite an
education for me. I had never been to the US
capital to do something like that before, but it gave
me enough confidence that later I have been to my
state capital to do some lobbying for Pulse oxymmetry and
for some other things. For the general Art Defect Awareness Week,
(36:45):
I went to my state capital for that as well.
I think it's great that they come together and they
guide you on how to do this and show you
one voice can make a difference.
Speaker 1 (36:57):
Absolutely absolutely, I think that training is so invaluable because
our political system is different, the lobbying and the way
it's set up is different as well. The leaders of
that in Australia is Heart Kids and some of the
key clinicians and some of the key advocates in the community,
and it's been very effective. But as for going into
(37:18):
the states and territories or to see your local member.
I think that's something that we're still building towards.
Speaker 2 (37:25):
I'm sure there are other adults with congeneral heart effects
in Australia now who think maybe I need to get
involved in lobbying. How would they get started?
Speaker 1 (37:35):
Well, I kind of fell into it. So I was
very fortunate. I was finishing a job at Parliament House
as a ministerial advisor, which I think would be similar
to being an advisor to a senator in your Congress,
and I'd been doing that for a couple of years
and was stepping down out of the role. I saw
(37:56):
my cardiologist one day for an annual checkup and he said, oh,
you might be good for the National Action Plan and
I was like, I'm trying to wake you're talking about.
He said, o'h. Let me introduce you to the CEO
of Heart Kids. This is in twenty eighteen I think,
and got to meet him and he said, yeah, that's great.
You've got a mix of I understand the national policy,
(38:16):
I understood the political landscape and I had the personal experience.
So I was thirty four years old and got to
be on the National Steering Committee and then part of
the working groups to develop the National Action Plan and
then the Standards of Care as well, which was fantastic.
But I really did kind of fall into it and
was just fortunate to have that unique mix of skills
(38:39):
and lived in Canberra and understood how politics worked and
how policy was developed, so I was able to contribute
that as well as my own personal experience. So after
I was part of that process, I applied to be
part of the board of Heart Kids and was on
the board for a term and a half until I
stepped off to launch at All Well. And that had
(39:01):
been a complete eye opener experience. When I joined the
National Action Plan groups, I hadn't really met that many
people with congeneral heart disease. I was thirty four, and
I think I'd met a handful of people like four
or five maybe as an adult. And sitting there then
talking about the needs of an entire community, that, to
(39:23):
be honest and you really know, was quite overwhelming and
really made me reassess my identity because for such a
long time I had still been ignoring my congeneral heart disease.
It was this thing on the side, not a big deal,
don't want to talk about it, nothing to see here,
(39:44):
and then I had to change my identity to really
think about where does congenital heart disease fit in with
that because I had tried for so many years to
be fit healthy, career driven, really wanting to achieve well.
I don't want to be seen as the sick girl
in the workplace. I don't want to be seen as
(40:05):
the weak link in a team. It was quite confronting
for me. So having to go through that process of
relearning and understanding where PhD fit into my persona and
what I wanted it to be took a few years, really,
and some of the conversations and learning how other people's
experiences is quite confronting sometimes, so understanding how their experience
(40:30):
was theirs and what mine was was mine and sort
of not taking it on too much was also something
I had to learn. So if people are interested in
doing advocacy, I highly recommend it, but I would start
by meeting a few other people in the community who
you can share your story with, you can hear their
story and you can bring that into anything that you
(40:53):
want to speak about, and then reaching out to organizations
that you're interested in working with directly is a great
way to raise awareness and start doing some advocacy work.
And advocacy work might not be going up to Parliament
House and talking about a national standard of care. Maybe
it might be something like putting on a community barbecue
(41:15):
where you can start having conversations and bringing people together
and raising awareness of congenderal heart disease and just connecting
people that are more than enough.
Speaker 2 (41:25):
That's a great way to get started, even just being
on Facebook and getting involved with some of the groups
that way. I agree it's too overwhelming to say, oh,
I'm just going to go to the Capital today lobby
by oh Grossmith. It's very daunting. So definitely to join
in with a group to find out where your story
fits in with other people's stories and how you can
(41:48):
work in a united front. I think that gives you
a much better opportunity for success. Not that one voice
doesn't matter, It really does, and it's amazing what one
person can do. But I think I think that their
strength and unity.
Speaker 1 (42:03):
Absolutely And I think when I was on the board
of Heart Kids, I was one of the youngest people
on the board, and I was one of a couple
of people who were adults with congenital heart disease. I
thought one of my key roles was to really listen
to the community and bring their views to the board
and speak for my community that I understood. So I
(42:25):
really did try and make an effort to get into
those community groups on Facebook and meet people and try
and understand the different versions of CDHD and the impact
that it had on different adults and their life, their career,
and how their life trajectory changed and went up and
down as people went along in their lives with congenital
(42:46):
heart disease and be able to bring that to the
board or be able to bring that to the National
Action Plan or the standards of Terre. So it wasn't
just my view and that was really important for me.
Speaker 2 (42:59):
Yeah, I love that. So it's almost like you were
the mouthpiece for all of those people.
Speaker 1 (43:05):
I tried to pull together many of that could. I
love it, and nothing beats their own personal story.
Speaker 2 (43:11):
That's true, but not everybody has the opportunity that you
were afforded, and it's really nice to know that you
felt comfortable sharing all of those stories. I find out
a lot of the people I reach out to feel
too shy or they don't have the confidence. This definitely
does take some confidence to get up in front of
(43:34):
people and to share something as personal and emotional as
what we've been through, don't you think.
Speaker 1 (43:39):
El I do. But I think maybe I'm just oblivious too,
And I hope that I love to talk, so maybe
that's just a bit easier inteading I mean people and
they're too shy to do it. I'm like, what you're
just gonna You're just talking? Oh wait, no, I like that,
ell you need to. So I deliberately tried to find
(44:00):
shy people to get their stories and make sure I
shape it the right way, advocate for them how they want.
Speaker 2 (44:06):
I love the we need extroverts like you, because that's
beautiful that you don't have any problem with that. And
you're showing me today how articulate you are and how
confident you are to talk about an unusual circumstance. But
it's not unusual to you because it's the way you
were born, so you don't look at it as unusual.
And that's what my daughter says to me all the time, too,
(44:28):
is mom, this is just the way I am. It
would be like feeling like you're unusual because you have
brown eyes. Some people have brown eyes. Some people have
heard you drive me different. Yeah, exactly. You have written
a book to help others, not with heart disease, but
with chronic illnesses, and I found that really interesting. Can
you tell me why you wrote your book and how
(44:48):
long it took you?
Speaker 3 (44:50):
Yeah?
Speaker 2 (44:51):
Sure.
Speaker 1 (44:51):
I wrote a book called Your Ultimate Surgery Success Guide,
and I wrote it because I've been through five open
heart surgeries. I would meet people, whether they were having
open heart surgery or major cancer removal surgery, or even
a hysterectomy or some kind of major surgery. I would
have all these tips for them, and I didn't want
(45:13):
to overwhelm them. Then I thought, how can I put
this together to try and help people. Quite a few
years ago, two THEOUM seventeen, I decided to write a
blog called Tips and Tricks from a Pro for open
Heart Surgery and it went on the Hat Kids' website
and they told me that it was one of the
most clicked on sites on their whole website, which was fantastic.
(45:37):
And it went for about three pages, and I thought, yeah, okay,
I put a lot into this. This is really helpful.
But then I kept thinking, no, this is really just
the tip of the aspect. There's very much more to
major surgery. So I decided to take some time off
work and sit down and pen the book to really
(45:58):
try and capture everything and help you people and bring
together ractical things. When I had my fifth open heart surgery,
I googled it and looked at blogs and fact sheets
and things like that, and got to the point where
when I was reading them thought, hey, on a minute, no,
you're missing this. Oh you need to add that in here.
And it finally dawned on me that I actually knew
(46:19):
a lot more than I anticipated it and I didn't
need the fact sheets. I could write it myself, and
I very humbly thought I could do a bit job.
So I down and wrote the book. And things that
people really struggle with as finances. It's expensive going in
for major surgery, even with Medicare and Australia right there's
(46:42):
a lot of intarbements that people don't understand that they
can access in Australia and even in the US, I'm sure,
so I put in all the budget strategies. The other
thing that I realized, just as an adult, I have
to still navigate a career while taking effectively a sabbatical
to have major surgery. So there's a whole chapter on
(47:05):
workplace tactics, how do you talk to your supervisor? What
lever are you entitled to? How do you figure all
of this out? It even includes a script on how
you can talk to your supervisor and approach that conversation,
because that's one of the key things that I fell
down with When I was twenty one. I had no
idea how to talk to my supervisor. But when I
was thirty three, I was much better at it. And
(47:27):
it includes everything from questions to ask your surgeon, how
to choose the right hospital, how to get into a
good mindset to go in from major surgery, which is
really tricky, and all the practical ways that you can
lean into helpful resources like therapy, somatic techniques, and other
things that you might need.
Speaker 2 (47:47):
How long did it take you to write it?
Speaker 1 (47:49):
I think it took be about three months to really
sit down and smash it out, and then a couple
of months later I then spent the time to put
it into a format that I could put out there
for everyone to access, So probably about four months in total.
Speaker 2 (48:06):
That's amazing because all the things that you listed, Wow,
that's a lot of information and probably almost like people's
Bible would they hopin if they're lucky enough to find it.
So tell me where can people find your book.
Speaker 1 (48:23):
It's available worldwide exclusively on Amazon, and in the US
it's fourteen ninety nine.
Speaker 2 (48:30):
Okay, great, Wow, that's just amazing that you came up
with that. But that's not all you've done. You have
also created Adulting Well. So tell me about what adulting
Well is.
Speaker 1 (48:44):
Adulting Well is a platform to help people with any
kind of chronic illness that draws on my experience of
congenital heart disease. And there's a couple of different pillars
to Adulting Well. There's a free blog that anyone can access,
comes out weekly and you've dropped right into your mailbox.
Then I've been developing and launching some digital courses. I've
(49:06):
got one about how to build a mindset toolkit when
you've got chronic illness. What I find with myself and
speaking to a lot of people and reading the research
out there, is that because the body keeps having these symptoms,
it can get quite frustrating and you can try switch
it off, and the mindset toolkit would help you try
and reconnect that in a nice, safe way. Then I've
(49:28):
got another course on how to navigate the workplace, and
I'm currently building a course on how to navigate healthcare finances,
which will be the biggest course yet to come out.
And I do live workshops and live talks around the world,
like for example, at Sennock and Cincinnati Children's Hospital and
various other places, which I absolutely love. It's been building
(49:50):
slowly and steadily. I've got an Instagram page for Adulting Well,
Facebook page, and the website is Adultingwell dot au.
Speaker 2 (49:58):
Wow. Do you ever sleep el?
Speaker 1 (50:01):
Yeah, that's quite well. Actually these days.
Speaker 2 (50:07):
I bet you do because you're so busy. I bet
you do sleep well. You're making such a positive change
in the world. I think that's absolutely fabulous.
Speaker 1 (50:17):
Thank you very much. I think I just saw a
gap and I couldn't find what I wanted, which I
think is why people start they'reing podcasts like you and
start doing these things, is to try and fill a
gap and help people because I couldn't find when I needed.
So I'm hoping that what I'm developing will help more people.
Speaker 2 (50:38):
Absolutely, that's exactly why I started doing what I did.
I couldn't find the resources I needed. I knew they
needed to be out there. I did have some abilities
to enable me to move forward, and that's why I
did what I did. Your book sounds amazing. Friends, do
check it out on Amazon. I will put the link
(50:59):
in the show note and I put the link to
Elle's website as well, because some of you may be
interested in some of the digital courses that she has
available as well. Thank you so much for being a
guest on our program today, Elle.
Speaker 1 (51:13):
Thank you so much for having Menna. It's been an
absolute delight and I'm so glad that I got to
come on your podcast and meet you. I am too.
Speaker 2 (51:21):
I'm so thankful that my producer Meghan Tones and thank
you Megan for being by producing you today. I'm so
glad she told me about you, because she is the
one who said, oh Anna, we really need to have
el Pendrick on the program, and here you are, so
definitely big thanks to Megan. Yeah, Dan, Meghan is amazing.
Speaker 6 (51:41):
Pang. It was really interesting to listen to Ellen.
Speaker 7 (51:46):
I'm so glad we have someone with your skills in
our community.
Speaker 2 (51:51):
This has been completely delightful. I really enjoyed it. Thanks again,
Megan for being the producer and scriptwriter. Megan does a
get enough credit me again. Thank you for helping me
write the script, find the guests, and then produce the
show for me today.
Speaker 6 (52:06):
That's okay, my pleasure, no worries at all. It's been
really good to listen into the show today. I think
there's some really interesting insights there about advocacy and certainly
your experience is growing up. Were actually the.
Speaker 7 (52:25):
Same age else I can relate even though I was
in Brisbane and we've got a hospital here Prince Charles
who have been taken care of me since I was
a baby, I can definitely relate growing up and thinking
shouldn't all this be behind me now? Even my doctor
back then said, oh, you don't have to come back
(52:47):
anymore and just take you to jocks and how if
everything's fixed or I still need to joke some none
of them makes it.
Speaker 4 (52:56):
Yeah.
Speaker 2 (52:57):
Yeah, it's funny because we did a discord event with
Megan and we listened to one of the first shows
that she did with me. It was so much fun
to listen to that show because neither one of us
had listened to it in years. That concludes this episode
of Part to Heart with Anna. Thanks for listening today.
Please leave a review of our podcast or whatever platform
(53:19):
you're using to listen. This helps others in the HD
community know about the podcast. Have a great week, and remember,
my friends, you are not alone.
Speaker 3 (53:49):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Hard to Heart with Anna
with your host Anna Jaworski can be heard at any
time wherever you get your podcasts. A new episode is
released every Tuesday from noon Eastern time.
Popular Podcasts
NFL Daily with Gregg Rosenthal
Gregg Rosenthal and a rotating crew of elite NFL Media co-hosts, including Patrick Claybon, Colleen Wolfe, Steve Wyche, Nick Shook and Jourdan Rodrigue of The Athletic get you caught up daily on all the NFL news and analysis you need to be smarter and funnier than your friends.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com