February 5, 2025 • 43 mins
Emily Falcon's journey with a rare heart condition is nothing short of inspiring. After multiple heart surgeries, she defied the odds and became a dedicated 5K athlete, showcasing resilience that many find empowering. Joined by Jenn Dimas from the Fort Worth Public Library, Emily shares how literature has been a powerful companion in navigating her chronic illness. This episode also shines a light on Heart Month, weaving in personal traditions and cherished memories, such as honoring a mother's legacy through an annual cruise.
Anna Jaworski, a mother to a single ventricle heart survivor, shares her story of advocacy through Baby Hearts Press, a publishing company she founded to offer resources for families dealing with congenital heart defects. Both Emily and Anna emphasize the transformative power of personal narratives in literature, offering hope and strength to those in similar battles. Together, they explore the challenges of accurately representing chronic illnesses in media and the significant impact of personalized doctor-patient relationships, encouraging listeners to become vocal champions for their health needs.
Our community extends beyond the airwaves with the launch of an innovative Discord channel, inviting listeners to engage directly with podcast guests like Hope, Rita Scoggins, and Megan Tones. This episode also teases an upcoming interview with Dr. Paul Grossfeld, who will discuss groundbreaking genetic discoveries related to heart conditions. With a focus on building supportive networks and fostering understanding through stories, we invite you to join us as we navigate personal advocacy and collective empowerment in the heart health community.
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Anna Jaworski, a mother to a single ventricle heart survivor, shares her story of advocacy through Baby Hearts Press, a publishing company she founded to offer resources for families dealing with congenital heart defects. Both Emily and Anna emphasize the transformative power of personal narratives in literature, offering hope and strength to those in similar battles. Together, they explore the challenges of accurately representing chronic illnesses in media and the significant impact of personalized doctor-patient relationships, encouraging listeners to become vocal champions for their health needs.
Our community extends beyond the airwaves with the launch of an innovative Discord channel, inviting listeners to engage directly with podcast guests like Hope, Rita Scoggins, and Megan Tones. This episode also teases an upcoming interview with Dr. Paul Grossfeld, who will discuss groundbreaking genetic discoveries related to heart conditions. With a focus on building supportive networks and fostering understanding through stories, we invite you to join us as we navigate personal advocacy and collective empowerment in the heart health community.
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):
I was born in nineteen eighty two and I had
a heart attack at seven weeks old. And although one
in one hundred babies in the US are born with
a heart condition, mine occurs in one in three hundred
thousand babies, so it's pretty rare.
Speaker 2 (00:29):
Happy Harbund to all of my wonderful listeners. I am
super excited today to say that I have a chance
to take part in an interview with Emily Falcon and
Jennifer d Maas.
Speaker 3 (00:43):
From the Fort Worth Public Library.
Speaker 2 (00:46):
These ladies were actually delightful to talk to and so
perfect for us to do it right at the beginning
apart month. This is the first week of February, and
Jennifer DMAs told me that I could use this recording
and share it on my podcast. For twenty twenty five,
I've been sharing a little bit of a personal story
(01:07):
and then a little news and then the interview. So
I wanted to share that today I will be leaving
to go on a cruise with my sister. Not everybody
knows this, but my mother passed away in twenty eighteen.
After she passed away, my sister and I decided that
every year around my mother's birthday, we would get together
(01:30):
to have some sister time. We would go to Galveston
to visit Mom's grave and just have some quiet, quality
time together. We're both such busy professionals that we don't
often't make time for each other, but we felt this
was something important and this was something Mom would want
us to do. This is our first time to go
on a cruise together, and we're super excited about it.
(01:52):
So I am happy that I can share Emily and
me talking about chronic illness and how literary devices such
as books can be helpful to people who are living
with kron uncomnis. I think that this is perfect for
Hart Month. So that's my little story. And as far
as news, it's Hart Month. We're going to have so
(02:14):
many interesting interviews this month. We'll be starting next week
with an interview with doctor Paul Rosvelt and he's going
to be talking about the genetics behind hope of funsy
Collector syndrome and what they have discovered. I'm really really
excited about that. If everything goes according to plant, we.
Speaker 3 (02:34):
Will be having at the end of the month our.
Speaker 2 (02:36):
Very first discord experience. I've been working with a couple
of volunteers to help me create a discord channel that
will not only be for Hard to Heart with Dana,
but it will be for all of the podcasts in
the Hood podcast network. It will give us our own
server and place where we can listen to episodes of
(02:56):
the podcast together with you, our listeners.
Speaker 4 (03:00):
So it's very amazing is we will have our guests
in the studio with us. So those of you who
are listening to the show, if you have a question
that you would like to ask the guests, you can
do that. We'll be starting with my daughter Hope, And I'm.
Speaker 2 (03:16):
Very happy that we'll have a chance to do this
because I think we'll be able to reach some people
then maybe we haven't reached before.
Speaker 3 (03:22):
How awesome is it that we can talk to.
Speaker 2 (03:25):
People who have been on the program before, and maybe
you'll listen to an episode and you thought, why didn't
Anna ask this question or that question? Well, now's your
chance to play the interviewer. Now's your chance to ask
your question and get it answered by the guests. Some
of the people who have told me that they're willing
to learn discord and come into discord with me or Hope,
(03:46):
my daughter, and she's the one who got me interested
in Discord. To begin with read a Stogged who is
a long time volunteer with herching Night the Club. She
has been on the program multiple times, so we'll be
pigging one of for episodes to do. And Megan Townes,
my amazing scriptwriter from Australia.
Speaker 3 (04:05):
She will be coming.
Speaker 2 (04:07):
Into the Discord Server and we'll be listening to one
of her episodes of people will be able to ask
her questions. If you have been against a hard to
part with Anna and you would like to come into
the Discord Server with us, let me know. I think
it would be awesome. The plan right now is to
do one a month. I tended to do one in January,
(04:27):
but SEVII of this server is really more challenging than
I thought it would be. I think now that we
almost have it completely set up, it won't be so bad,
but just trying to wrap my brain around how Discord
works has been a bit of a challenge. So that's
the Dames and that's a little story for me, And
now onto the interview. I really hurt you all enjoined us,
(04:49):
happy hearkmant and I look forward to hearing from all
of you. Please reach out to me on Facebook or
through my email. You know about the heart chat, the
cloud website chinat dot com have a great heart band
Patti Leader by right.
Speaker 3 (05:07):
Welcome everyone, Thank you for joining us today. I'm excited
to have author Emily Falcon and publisher Anna Jaworski here
to talk about Emily's book From the Sidelines to the
Finish Line and how books can help advocate for people
with chronic illness sins. Let me start by introducing Anna
and Emily. At seven weeks old, Emily Falcon had a
(05:30):
heart attack and was diagnosed with an anomalous origin of
the left coronary artery from the pulmonary artery called al kappa.
This led to two open heart surgeries at six and
thirty five. She loves travel and animals, both of which
have helped get her through difficult times. Emily is now
an athlete who participates in a weekly run club and
(05:52):
runs five K races throughout the year. She hopes to
inspire others who have had health limitations to never waste
a moment and not let life pass them by. Anna
Jaworski is a heart mom to a single ventricle survivor.
Her first piece as a paid author was in critical careners.
After writing her first book, Hypoplastic Left Heart Syndrome, a
(06:16):
handburk for parents, she was unable to find a publisher
willing to take it on, so she and her husband
Frank started Baby Heart's Press, a publishing company devoted to
briding resources for the congenital heart defect community. When not writing,
helping other people write their stories, or podcasting, you can
find Anna in her garden tending her roses or other flowers.
(06:39):
Or maybe you'll find her with Frank drinking some iced
tea in their dinosaur garden with their fur baby Buck.
Wherever you find her, you'll be sure to be invited
to stay for tea and a chance to play a
game or tell a story. So welcome. I'm so happy
to have both of you with us. I wanted to
start with Emily talking about her journey with al Kappa
(07:01):
and why you wanted to get it out to others.
Speaker 1 (07:05):
Thank you, Jennifer for having me this great opportunity. You
already gave some of my history, but I've been around
a while, so it's a little long, but I'll try
and keep it short. As you mentioned, I was born
in nineteen eighty two and I had a heart attack
at seven weeks old, and although one in one hundred
babies in the US are born with a heart condition,
(07:26):
mine occurs in one in three hundred thousand babies, so
it's pretty rare. Doctors weren't so sure how to treat me,
so they waited to do my first open heart surgery
until I was six. I lived a pretty limited life,
but I did lots of normal stuff too. I went
to school, but there was no sports with other people.
I had trouble with stairs and hills all the time.
(07:46):
I took medication, I went on family vacations, and I
participated in things I was interested in with restrictions and
tried the best I could, and things were pretty normal
for me. I was twenty eight and I came back
on a trip to Morocco and I experienced an abnormal
heart rhythm called aphib That kind of started my adult
journey with more heart problems than I already had.
Speaker 2 (08:09):
I had a few minor.
Speaker 1 (08:10):
Surgeries to keep that away, but it came back when
I was thirty five. In twenty eighteen, doctors decided I
needed to have a second open heart surgery. They replaced
my valve and that changed everything. Once I was recovered,
I could do more than ever before. Stairs were a
little bit easier. My neighborhood hill was so much easier.
(08:31):
I could go up without becoming so breathless, which was
totally new to me. And these are things people I've
experienced their entire lives without difficulty, but I was just
learning about. I was able to start running for long distances,
and I'd never been able to do that before. I
decided I'd like to run into five k race in Boston.
The big deal is the Boston Marathon, but of course
(08:52):
I could ever do that the same weekend the same
association that puts that on as a five k. So
eight months after my surgery, I ran in that race.
I never stopped to walk or rest, which I'm most
proud of from I know. And I just keep trying
everything new and seeing if I can do it. And
from doing that, I realized I should write a book
(09:13):
to try to inspire others so that they don't take
their health for granted and try when they can and
not let opportunities pass them byd.
Speaker 2 (09:21):
I love that, Anna.
Speaker 3 (09:23):
Do you want to talk about your journey and your
publishing company?
Speaker 2 (09:28):
Yes? Thank you? You did tell a little bit about
it at the opening, like Emily's dead, which is great,
but my child was born with a single ventrical heart,
so a condition it's considerably different than Emily's. It's the
fourth most common artifact. Doesn't matter of that my child
had to have surgery within the first couple months of life,
(09:49):
or else my baby would have died. So my child
has had three open heart surgery and has had some
of the same situations that Emily had with the m
As Emily had a fan, my child had a different
kind of problem. But just like Emily, my child's relations
and it's very common in the cogital heart defect world
(10:12):
for people to need certain medications or other procedures aside
from just the open heart surgery. But my child's a
little bit younger than Emily, not much. She just turned
thirty in August, so she's doing greater. Just like Emily.
She's an inspiration and I felt that her story needed
to be out there just the same way Emily did.
(10:34):
It could inspire other people, It could give people an
opportunity to know that these people can grow up, they
can grow to have happy, productive lives. Sadly, even today,
in twenty twenty five. It's hard to believe, but there
are still women who'll find out in utero that their
baby will have a single ventricle home and they're encouraged
(10:55):
to abort them. I wanted people to know that these
people grow up and lives happy lives and give people
a chance for life. Right.
Speaker 3 (11:05):
Can both of you talk about why literature helps in
the process of advocating for specific communities and in this case,
people fighting chronic illnesses. From my point of view, I
think invisible illness hasn't talked about lunch, and there's often
stories about people with cancer or other illnesses that are
more common, or an adult who's had a sudden life
(11:28):
changing event, and not so many who have grown up
with chronic illness like I had an and his child.
Speaker 1 (11:34):
You often feel very isolated and alone, and I think
this is the best way to get our stories out
without having the pressure of sharing things we don't want
to because we're writing what we want to say and
we're in control of it. I hope it empowers people
to get our voices heard.
Speaker 2 (11:50):
I love that Emily and Emily wrote for the last
book that I published, called The Heart of a Heart Warrior,
which my daughter also wrote for I love that book
because it's all stories only by adults who were born
with heart defects. And I agree with Emily, it's an
invisible illness for the most part. Le sure at the beach,
(12:10):
the boke in, stay your jokes. And as a mom
who had a baby thirty years ago, there were no resources,
there was no Internet. It's hard to believe that I
had a baby before the internet was really aside from
within United States government. By putting together my first but
a couple of plastic left heart Syndermambic of Parents, which
(12:31):
did not become the best seller, but it gave me
a chance to share my child's story. And in the
second edition I had another who wrote her child's story.
My child had a staged surgical procedure that her child
had break planned, which is another option for babies were
(12:53):
born with single ventricul hearts, and so I wanted to
have those perspectives in the book. I received so many
cards and letters and photos of children. I think probably
the cards that mean the most to me are the
ones friend the women who told me I was encouraged
to abort. Your book gave me hope my child's doing great.
(13:16):
I've received graduation pictures and cards throughout the year, seeing
and grow up. At Christmas, my husband and I said
when we decided to self publish herst book, if it
helps olly one family, it'll be worth any expense, because
we just wanted to give that picture of hope to
somebody else.
Speaker 3 (13:37):
And I think it's really important that it's all about visibility.
It's not something you see. One of the girls I
was friends within junior high in high school, she had
had open heart surgery. We all knew it because she
had a scar. But I'm going to be honest to
say it was nothing we ever talked about with her.
(13:57):
It was just this is the thing that she's gone through.
I think visibility is how you get information out and
how people actually understand, not something we talk about a lot.
Even when those chronic illnesses are something like asthma, we
as a culture keep those things personal.
Speaker 2 (14:18):
I think everybody wants everyone to be fine. So I
know when I brought my baby home after the first
open heart surgery, we knew that there would be a
second surgery within months to a year. It was not
going to be a long time like Emily Wait six years,
which just wow. I mean my baby wouldn't have survived
that long. But I remember after the first surgery, he
(14:39):
told her family there will be one us to be
two more surgeries coming up. Everybody said, yeah, but the
baby's fine now, right, And I think that's so true.
I have a friend whose childhead as another invisible illness,
and that's the way people would treat her. Or she
would regard to the emergency what she mean, and then
(15:00):
and she would come home and everyone would say, but now,
Shane's fine, right, And it's a lifelong condition, just like
congenital heart effects. They're okay for today, but something could
happen and we just have to be alert. You are
talking about this, Jennifer. Yes, so there is an invisible condition,
but he's not a lifelong condition. And if we don't
(15:20):
talk about it, we miss opportunity to educate ourselves, and
we might miss an opportunity to save a life. And
that's a pity, because anybody can learn CPR, and there
are chances that you might need to use it when
you never think you would, like in a school or
at a football game. And we've all heard tragic stories
(15:43):
where people are not paid. Thankfully, because enough that these
situations have occurred. There are now nonprofit organizations providing AEDs everywhere,
and you see them in the airport, and you see
them all over the place, even in the churches, and
it's very simple to you is you turn it on
and there's a little voice that speaks to you. So
(16:03):
we are becoming a more literate society about because jobhart.
I always say, my conditions can be managed, not cured,
because they want you to be better. And I think
in television and movies there's no accurate portrayal because even
a show is popular as Gray's Anatomy, one of the
main characters had heart surgery. She had a scar for
(16:24):
one episode and then never again. Everything was fern And
then recently the other doctor had a valve replacement, just
like me. She had some restrictions at work, but then
she was backlifting people and doing crazy things that I
know were not allowed after researcher.
Speaker 3 (16:40):
That's called them lack of research.
Speaker 2 (16:44):
That's too bad, because that's a fist opportunity to let
people know that it's okay to have this valve surgery,
it's okay to have these restrictions, and you're not expected
to go back to exactly the way you were right away.
That disappoints me that that happens. I know there was
one popular TV show about twenty five years ago or
(17:07):
so where they contacted me and they told me that
they had bought a copy of my book and they
were portraying a child with hypoplastic tart syndrome. But I
lived in the country and I didn't have cable, never
got to see the pere agree. But I'm hoping that
they did it accurately. I don't know. It was such
a long time ago. It's funny that you saw that,
(17:30):
and Marie, I'm sure that really caught your attention.
Speaker 1 (17:33):
Yes, especially because the doctor had developed surgery was a
hard surgeon in the show and she doesn't want to
follow any of the rules or do anything.
Speaker 2 (17:41):
She tells all the doctors and nurses make the worst patience.
And I'm married to a nurse, so I can totally
say that.
Speaker 3 (17:51):
Oh, that's great. But it is interesting how there's always
this conversation about how inaccurate those shows are, and for
some people that is the only visibility that they see
for these kinds of things. We had an author visit
last week with someone who works at the Crime Lab
and Fort Worth she writes very gritty murder mysteries. We
(18:14):
were talking about how people's understanding of what happens in
a crime lab is CSI and how unrealistic that is.
They don't solve cases in thirty minutes, and that most
of the crime lab work is not the flashy stuff
(18:37):
that's on CSI. So it's very similar, right, what we
consume as media around health are these shows that while
maybe they're saying all the right word, it's not always accurate.
And it's why other forms of media are important, right,
(18:57):
Why biographies and those sorts of things which tend to
be a bit more easier to understand than just straight nonfiction.
You're getting to know a person, and those sorts of
things are really important for people to relate to and understand,
but also help if you're suffering from those sorts of things.
Speaker 2 (19:18):
I think that's what makes Emily's memoir so important is
she gives us a snake peek, not at thirty minute
with a wife. We get to see years, and we
get to see how she was affected as a child
and a teenager. We all know when kids go through
those teenage years that there can be some challenges, but
(19:39):
when you have a child with the chronic guillness, those
challenges are exacerbated, and then to see her go into
young adulthood and to lotsom the way she has as
a parent of a child with a heart defense, a
memoir like Emily Who's Purio.
Speaker 5 (20:04):
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,
(20:24):
please visit our website at www Congenitalheartdefects dot com for
information about CHD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
(20:45):
are listening to Heart to Heart with Anna. If you
have a question or comment that you would like addressed
on our show, please send an email to Anna Jaworski
at Anna at Heart to heartwith Anna dot com. That's
Anna at Heart tooheartwith Anna dot com. Now back to
Heart to Heart with Them.
Speaker 3 (21:05):
What can our audience do in their communities to advocate
for themselves and their loved ones if they're dealing with
these types of illnesses, and what can those of us
who don't have this struggle also do.
Speaker 1 (21:19):
I had two ideas about how to help. The best
thing I did as a kid was go to Openheart's camp,
where I got to meet a lot of other kids
who had heart surgery or had heart conditions, and it
was great. Did not feel different and feel included and
not even have to talk about anything if I didn't
want to, or if I did, I didn't have to
explain because they totally knew everything I was saying without
(21:40):
having to say much. If you in a community, you
could set up an event maybe or a group where
people can just come together and talk about their condition
or not and just know that everyone there can understand
if they want to talk about it. It could be
as simple as just going to the movies together and
then going out for coffee after or a day in
the park and you could go on a walk if
(22:01):
you feel like where you could just sit if you
don't feel up to it, but you'd still feel everybody
around you and maybe make a friend or two and
the other thing I thought if more directly, if you
know someone is to join them at an appointment if
they ask, or if they don't ask, maybe offer, because
it can be really overwhelming at those appointments when you're
alone and it's hard to listen and take everything in
(22:23):
and speak up and ask questions if you're nervous or
just confused. So your partner friend could take notes for
you or ask the questions you're too afraid to ask.
If you prepare ahead, or just sit there and be
there with you, so the person knows they're not alone
and they can ask them if they remember something, they
might later help them write an email with follow up
(22:44):
questions later if that's helpful to them.
Speaker 2 (22:47):
Those are all such great suggestions. And if you're the
friend of a child who has a chronic illness or
a condition, it's an invisible illness. I think that there
are work rapes now like you ever before. I actually
helped start a support group in Austentechnis. Even though I
live outside of Boston, that was the closest big city
where children were treated. I had to drive there for
(23:10):
my child pediatric partyologists. And that's why another heart mom
and I started a support group there. Not everybody has
the wherewithal to start a support group, but luckily you
don't have to because now thanks to Facebook, creddits, and
so many other online platforms, you can find support. If
you want support, you can find it. So many more
(23:31):
of the hospitals offer support groups for parents and families.
But in addition to that, there are also nonprofit organizations.
Like Emily said, there are camps for children. There are
also camps that the whole family can go to, which
is awesome because if you're the sibling of somebody like
Emily or my daughter Hope, sometimes the siblings feel left out,
especially if they're sibling is having multiple surgeries or they're
(23:55):
dealing with long hospital days. The healthy children off get overlooked,
not because they're not important, but because they're not facing
a life threatening condition. And so it's lovely that there
are nonprofits that put on camps for the whole family.
And then those siblings go off and just like Emily
would say, you don't feel alone because they're with other
(24:17):
people who also have a sibly who has a condition,
and they can talk and they can have fund together.
There's so many different organizations, and I have a nonprofit
website that has a list of some of the different
nonprofits that provide those opportunities for children with congenital art defects.
So yeah, I think just reaching out to others you
(24:40):
don't feel alivee so you can do the best job
and can raising a child. We don't want to raise
our children wrapped in bubble wrap. That is not the
way we want to do things. And in fact, it's
funny because my child surgeon said to me when I
asked about restrictions back in the early nineteen nineties, he
said to me, Anna, we did not save your child's
(25:02):
life so that she can wrap her and bubble wrap me.
Saved her life so she can live a full, meaningful life.
And that means letting her go out and do taekwondo
and do things that other kids for age would do.
That's what.
Speaker 3 (25:17):
I love all that. The biggest thing is connection, right,
It's about finding your people and connecting with them and
figuring out ways to create relationships. And Emily, what you
were talking about having someone go and take modes, it
made me think of some things that you had written
in the book about how when you were a kid,
(25:40):
the doctors really wouldn't talk to you, and so you
didn't really understand and then as you got to be
an adult trying to navigate that because you didn't have
all the historical information. Can you talk about that and
do you wish that things had occurred a little differently
when you were younger.
Speaker 1 (25:59):
That's a hard question. In the beginning, that my parents
were by every single appointment, every single test, and all
those kind of things, So doctors just spoke to them
and I might have heard it and paid attention, but
not really known much of what it meant. And I
wouldn't have known to ask a question or anything, because
my parents didn't ask very much either, because people just
don't question doctors because they're in charge, right, You do
(26:21):
what they say, unless it was something they had to ask,
of course they did. Also, there weren't really that many
big emergencies after my first surgery, so there wasn't really
anything to discuss except sure of this test and we'll
stay on this medicine. I feel like I became more
conscious of how what was going on, maybe in middle school,
and that doctor I had was like very important. He
was constantly interrupted with phone calls and knocks on the door,
(26:43):
so it was very intimidating to want to talk to
him and ask anything. He also just went to a
checklist every appointment without really looking at me, being like,
you're not doing drugs, you're not smoking, instead of seeing
me as a person, like, well, what do you want
to do?
Speaker 2 (26:56):
How can I help you?
Speaker 1 (26:58):
Those kind of questions were never I wasn't gonna say anything,
but if he tried to have me have a blood
test or something, I might have said why, because I
didn't want that. After college started, I started going to
these appointments alone, and he had less student doctors in
the room, so it wasn't so much of a show
of look at what she can do, look what she's doing.
(27:18):
So I started to be able to talk to him
more because there wasn't as many people in the room.
Speaker 2 (27:21):
Which helped a lot.
Speaker 1 (27:23):
But he never rushed us out of that room or
made us feel our appointment time was too short, which
I'd highly appreciated. I wish doctors did more of today
because everything is so much more overworked. I have a
new doctor now though, because he retired, and she knows
I don't like any.
Speaker 3 (27:37):
Of that stuff.
Speaker 2 (27:37):
So the student doctor comes in for.
Speaker 1 (27:40):
Ten minutes in the beginning to do quick whatever, and
then they're gone and it's just us from then on.
I feel much braver to be able to talk to
her and ask her things. And I still feel that
fear to ask, but I also know that she's much
more willing to answer, and she tries not to rush me.
Speaker 2 (27:56):
I want a.
Speaker 1 (27:56):
Relationship to be good because this is another It's not
like I can just walk down the street. You go
to any hospital and to any other doctor. I have
to have her. There's no one else who can help me.
So you have to build the two way street and
make sure everybody's happy with the relationships. If it was
more common illness and you could go anywhere, maybe I'd
be much more defensive and do things differently. But you
(28:17):
just can't. When you have a rare illness.
Speaker 3 (28:19):
You have to stick with what you've gone When it's
what you want from any relationship with a doctor, whether
that chronic illness or not. You want to be able
to have that two way street. You want to be
able to talk to people. I'm an athmatic, so I
am very unhappy when I have to go to urgent
care for a cold, because I understand that the cold
(28:44):
is different for me than it is for most people.
And sometimes my insurance is like, no, you have to
do the teledoc, and I'm like, I don't want to
do the teledoct because they are not going to give
me what I need because they don't have my file.
We haven't built that relationship. I agree, that's something that's
missing these days.
Speaker 6 (29:04):
You need to be able to have that relationship and
that understanding with any doctor that you see, because otherwise
they don't get all the information that they need, and
you also don't get all the information that you need.
Speaker 2 (29:17):
We live in a difficult time right now. At our hospital,
you have a quote unquote PCP, a primary care physician. However,
because people are so busy, it's very common for you
not to see the same person twice. And when you
are like me and you're relatively healthy, it's not a
big deal. Yeah, I had my tugs was taken out,
(29:38):
I broke my arm when I was seven, That doesn't
really matter. When you're talking about open heart surgery and
different medications and other procedures you've had in only different situation,
and those kind of people need to have the same doctor,
not just from appointment to appointment, but from year to year.
And I'm thankful that now with the electronic record system
(30:00):
that we have, it's easier for doctors to share information
than ever before. But even that is a problem for
people like Emily because what they were born before there
were electronic files, and so a lot of those own files,
maybe one or they have binders of information at one
particular hospital, but to try to get that at another
(30:22):
hospital is a real perror.
Speaker 3 (30:24):
It's really difficult.
Speaker 2 (30:26):
And any parents who are listening to this, if you
can get a copy when your children are young, keep
a copy of just not every single visit, but you know,
certainly surgical notes and any special things that happen like
pacemaker insert or an ablation, keep a file of that,
because if they don't have it electronically, you may be
(30:50):
the one who to bring the information to another facility,
especially if you travel. Emily loves to travel. It's just
my daughter, Hope. It's scary to think about going to
Japan or going really far away from home when something
could happen.
Speaker 3 (31:06):
How do you handle that, Emily?
Speaker 1 (31:07):
Since you do travel a lot and you do have
that so I'm a big researcher and I do a
lot of research owner trip. I don't really go on
a whim or usually take about a year to prepare,
and I make sure that there's some kind of hospital there,
ask the cardiologist if they know anyone or where they
want me to go. I bring with me a copy
(31:29):
of my EKG. And if you don't know me and
you look at my EKG, you think that was very sick.
But that's normal for me, and a random doctor is
not going to know that, and they're going to freak out.
Speaker 2 (31:39):
So I bring the.
Speaker 1 (31:42):
EKG and then the most bit recent after visit summary,
which lists my medications in what the doctor has just said,
and it has my weight and all that, so something
terrible's going on, they can see what's going on. I
also wear a medical Alert necklace, which any person can
call for free anywhere in the world and get all
my history or connect to the doctor if I can't talk.
(32:02):
I also carry it to.
Speaker 2 (32:04):
Do list of what I want to do for fun,
but on that scene, with say.
Speaker 1 (32:07):
All my doctor's phone numbers and what to do if
I'm with a friend, I point to it and see
if something happens then I can't talk, just point to this.
Speaker 3 (32:15):
There really is about.
Speaker 2 (32:16):
Well be pared. Yeah, I thought that's impressive.
Speaker 3 (32:19):
No.
Speaker 2 (32:20):
Congenital Heart Association has on their website a list of
place ins where other specialists are in the world, so
that definitely helps. Again, it's says connections, Jennifer. Knowing where
you can find that information it does make a huge difference.
I have a thumb drive from my daughter that has
her last vertical notes on it, and I sent her
(32:42):
to college with that. What is to make sure of
that thing that when she had just had surgery just
the October Beport, she went to college and so everything
was still fresh and that made it that information.
Speaker 3 (32:58):
But I know you like to it's so solid travel, Emily,
so talk about why you do that, why you want
to do that, other than just enjoying travel.
Speaker 1 (33:08):
I used to go with my sister, but now my
adventures are a bit too much for her, so I
go alone rather than not go at all, because it's
like I say, don't waste a minute. You don't want
to miss out on something when you could have done it.
And I would definitely regret not going on these trips,
even if I'm alone.
Speaker 3 (33:24):
I go for a few reasons.
Speaker 1 (33:26):
Besides learning about new cultures and seeing new animals and
all those fun things and foods. It's like a break
from being here the hospital, knowing that I'm not thirty
minutes away. I'm actually away from them for a while
and they're away from me, which is nice for both
of us. It's like testing myself, proving to myself I
don't need them for a little bit and I can
do it if something should happen. I think I can
(33:49):
trust myself to take care of myself the best I can,
which is also a nice test. So after procedures, I
go on little mini trips to New York, which is
four hours away by bus. Then I go on the
overseas pring trips because that's not as easy to get
home from. I always test it first to make sure,
but it's really like the feeling of freedom and living.
Speaker 3 (34:10):
You have a destination that you would say has been
your favorite a visit, No.
Speaker 1 (34:15):
I think everywhere I go has something special, so I
never say there's a favorite, because there's always something that's
more special at one place than the other that you
can't compare.
Speaker 7 (34:25):
I love that this content is not intended to be
a substitute for professional medical advice, diagnosis, or treatment. The
opinions expressed in a podcast are not those of heart
to unite the globe, but of the hosts and guests,
and are intended to spark discussion about issues pertaining to
congenital heart disease or bereavement.
Speaker 3 (34:51):
All right, let's flitch gears a little bit. We know
we always have a few aspiring writers in the audience,
and since you am both a writer and a publisher,
it's the perfect time to talk about both processes. So Emily,
why don't you start talking about your writing and research
process and then talk about what a publisher is looking
for and what you need to know when trying.
Speaker 2 (35:12):
To submit your work. I never kept a journal.
Speaker 1 (35:16):
My father did when I was a child, a lot
of his memories or would start the book, and after
that I wrote down everything I could remember at once
and all the details, and it was the weeding it
and making it more of a story and dialogue. My
workplace as an editing center, so I went there for
writing help with different people, so like to get different opinions.
(35:37):
My family and friends help, and then I tried to
find a publisher. I sent out query letters where you
should try and get them interested in your story, and
that didn't go so well because it's such an niche
audience with that mainstream, I kept trying to make connections
with people, and then what are my connections directing me to?
So the time I met her and she helped edit
(35:59):
and meet the great suggestion and everyone loves the best
is the InterVoice in the book. And without that, not
as many people would connect to this story. She was
when the editor she helped after every wrote with the InterVoice,
and then I had like a paid editor and all
the professional graphics and all those things to put it together.
Speaker 2 (36:17):
So if you're interested in what publishers are looking for,
we old Mary Kayklein all the props for bringing us together.
She's a good friend of mine and her daughter was
born with the Kenjobahart defect, and she knew that I
had written some books and published books. I had decided
right before Emily reached out to me to change my
(36:38):
publishing company to a hybrid publishing company where I help
other people their books. It was such a delight to
get Emily's book. She had exactly what I was looking for,
which was somebody who was passionate about their story and
somebody who was willing to work with publisher. So many
times people write a story and they think, Okay, that's it.
(36:59):
I'm done. I'm not going to make any changes, don't
ask me any more questions about it. And if it
doesn't draw you in, and if it doesn't feel authentic,
then people are going to want to read it. And
one of the things I love about Emily was when
she reached out to me, I saw she had such
a great story. I just needed some reframing. And it
(37:20):
was scary for her because I talked about her completely
rewriting her book. It's a completely different way. It's just
that well, some of the other editors suggested something kind
of like that, but we just didn't know how to
do it. And so with her permission, I dissected her
book and helped to put it back together and her
a ton of questions. In unique position, because I had
(37:43):
raised somebody with a heart defect, I could ask her
questions that maybe another publisher wouldn't think to ask. If
you're writing a book and you have a great story
and you have as much, don't come to me because
my specialty is the genital heart effects. But there are
resources in the library that you can use that will
help meet you in the right direction. For another publisher,
(38:06):
who deals with that's book, So that's the kind of
publisher that you would out to, or other medical conditions.
You want to make sure first of all, that you're
writing a great story. Secondly, don't be married to your book,
be will laying to be flexible with it because the
people who are helping you, they have your best in
truests at heart, but they also have the audience best
in trists at heart. You want to make this a
(38:28):
team effort and then take the book to right place.
You wouldn't ask somebody like a university press to publish
a mystery. That's just not where you would go. So
you want to make sure that you're querying the right publishers.
And I think that's what made Emily's in my working
relationship so perfect.
Speaker 3 (38:50):
That's all great advice, Emily. Are you more of a
rite by the seat of your pants sort of person
instead of plotting everything out? Is that safe to say?
Speaker 2 (39:00):
I think so?
Speaker 1 (39:01):
I just wrote it chronologically. I also kept thinking of
In Green Gables, which is a movie I really liked
in book, where she always says right what you know?
So that's what I just kept telling myself.
Speaker 2 (39:11):
I love that.
Speaker 3 (39:12):
That is absolutely the best advice, write what you know.
Is there something you'd like to mention that we haven't
talked about so far.
Speaker 1 (39:21):
I would just say it be open to people you meet,
and you never know what someone's going through, being kind
and listen and don't judge him. If you know anyone
that would appreciate my book, please spread the word.
Speaker 3 (39:34):
We definitely have copies to check out at the library.
Speaker 2 (39:37):
Anna, do you have anything, Well, it's w first when
we're recording this, which means it's the beginning of heartmund
here in the United States or anybody who is apply
the United States, maybe not, but here in the United States, Dury.
In February we celebrate heart month, and now I'm trying
to say is special to a lot of people. But
in the heart world, could you have a heart defect
(39:58):
to war I think it's perfect, Jennifer that you're doing
this interview on a first day apartment, because this book
is particularly imporier for people who want to know more
about artifacts.
Speaker 3 (40:09):
I will say that the rescheduled date worked out better
for us. We were supposed to do this a couple
of months ago. I'm going to just remind if you
have a question for those ones in the Honorty from
in the chat. We haven't gotten any so far. My
final question always is is there something that you're currently
working on that you'd like to talk about, whether that
(40:30):
be a new book or just a new endeavor. I
don't have a new.
Speaker 1 (40:35):
Book, but I do have a big event coming up
at the Boston Museum of Science where I'm going to
be on a piano with an astronaut because I thought
it'd be nice because we can discuss overcoming challenges together.
So that's contaking a lot of my time working on it,
and it's in May.
Speaker 3 (40:52):
I love that that would be some fun awesome.
Speaker 2 (40:56):
I will be doing a presentation for Cardio PAB twenty twenty.
I'm super excited about that. It's a virtual cardiology comfert,
so I will be presented to cardiologists and my presentation
is will be on the pump and it's to give
the doctors sneak peek at what it's like for their
patients long after surgery and considerations they need to keep
(41:18):
in mind. Then I'm going to be on a panel
in Austin in April where we're going to be cooking
advocacy and technology, which I think will be fascinating because
I'm also a podcaster and Sick Theologist is going to
be cooking about different ways we inform our community about information.
I'm super excited about that. And I'm writing a memoir
(41:42):
about my daughter. My daughter, Hope is trans and I'm
writing about what it's like to be the mother of
a transwoman who was born with the cogenital heart effect.
We're all keeping busy, which is super exciting. I think
twenty twenty five is an exciting year for all of us.
I love that it doesn't look like God new questions
from the audience.
Speaker 3 (42:01):
I wanted to add earlier when we were talking, and
I should have put this on my slide show of
what's coming up, and I'd forgotten about it. You'd mentioned
about the importance of people knowing how to do CPR.
So for those of you in the audience, I'm gonna
drop a link in the chat. We are offering CPR
classes at the library this month and it's hard month,
and I'd forgotten to put that on my slide, So
(42:22):
that was the reminder to me. The link that I've
put in the chat is a list of all the
classes that we have going on in the library.
Speaker 1 (42:30):
This month.
Speaker 3 (42:31):
We'd love for you to come and get some great skills.
They're taught by the Fortworth Fire Department and you should
get lots of great information. I want to thank Emily
and Anna for sending some time with us today. I
hope you enjoyed the conversation and it gave you some
food for thought and maybe some things that you think
(42:52):
you can take away and do. Thanks again, Anna and Emily.
Speaker 2 (42:56):
Thank you so much. Jennifer, this has been such a question.
Thank you have a great day.
Speaker 5 (43:16):
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. Heart 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.
I was born in nineteen eighty two and I had
a heart attack at seven weeks old. And although one
in one hundred babies in the US are born with
a heart condition, mine occurs in one in three hundred
thousand babies, so it's pretty rare.
Speaker 2 (00:29):
Happy Harbund to all of my wonderful listeners. I am
super excited today to say that I have a chance
to take part in an interview with Emily Falcon and
Jennifer d Maas.
Speaker 3 (00:43):
From the Fort Worth Public Library.
Speaker 2 (00:46):
These ladies were actually delightful to talk to and so
perfect for us to do it right at the beginning
apart month. This is the first week of February, and
Jennifer DMAs told me that I could use this recording
and share it on my podcast. For twenty twenty five,
I've been sharing a little bit of a personal story
(01:07):
and then a little news and then the interview. So
I wanted to share that today I will be leaving
to go on a cruise with my sister. Not everybody
knows this, but my mother passed away in twenty eighteen.
After she passed away, my sister and I decided that
every year around my mother's birthday, we would get together
(01:30):
to have some sister time. We would go to Galveston
to visit Mom's grave and just have some quiet, quality
time together. We're both such busy professionals that we don't
often't make time for each other, but we felt this
was something important and this was something Mom would want
us to do. This is our first time to go
on a cruise together, and we're super excited about it.
(01:52):
So I am happy that I can share Emily and
me talking about chronic illness and how literary devices such
as books can be helpful to people who are living
with kron uncomnis. I think that this is perfect for
Hart Month. So that's my little story. And as far
as news, it's Hart Month. We're going to have so
(02:14):
many interesting interviews this month. We'll be starting next week
with an interview with doctor Paul Rosvelt and he's going
to be talking about the genetics behind hope of funsy
Collector syndrome and what they have discovered. I'm really really
excited about that. If everything goes according to plant, we.
Speaker 3 (02:34):
Will be having at the end of the month our.
Speaker 2 (02:36):
Very first discord experience. I've been working with a couple
of volunteers to help me create a discord channel that
will not only be for Hard to Heart with Dana,
but it will be for all of the podcasts in
the Hood podcast network. It will give us our own
server and place where we can listen to episodes of
(02:56):
the podcast together with you, our listeners.
Speaker 4 (03:00):
So it's very amazing is we will have our guests
in the studio with us. So those of you who
are listening to the show, if you have a question
that you would like to ask the guests, you can
do that. We'll be starting with my daughter Hope, And I'm.
Speaker 2 (03:16):
Very happy that we'll have a chance to do this
because I think we'll be able to reach some people
then maybe we haven't reached before.
Speaker 3 (03:22):
How awesome is it that we can talk to.
Speaker 2 (03:25):
People who have been on the program before, and maybe
you'll listen to an episode and you thought, why didn't
Anna ask this question or that question? Well, now's your
chance to play the interviewer. Now's your chance to ask
your question and get it answered by the guests. Some
of the people who have told me that they're willing
to learn discord and come into discord with me or Hope,
(03:46):
my daughter, and she's the one who got me interested
in Discord. To begin with read a Stogged who is
a long time volunteer with herching Night the Club. She
has been on the program multiple times, so we'll be
pigging one of for episodes to do. And Megan Townes,
my amazing scriptwriter from Australia.
Speaker 3 (04:05):
She will be coming.
Speaker 2 (04:07):
Into the Discord Server and we'll be listening to one
of her episodes of people will be able to ask
her questions. If you have been against a hard to
part with Anna and you would like to come into
the Discord Server with us, let me know. I think
it would be awesome. The plan right now is to
do one a month. I tended to do one in January,
(04:27):
but SEVII of this server is really more challenging than
I thought it would be. I think now that we
almost have it completely set up, it won't be so bad,
but just trying to wrap my brain around how Discord
works has been a bit of a challenge. So that's
the Dames and that's a little story for me, And
now onto the interview. I really hurt you all enjoined us,
(04:49):
happy hearkmant and I look forward to hearing from all
of you. Please reach out to me on Facebook or
through my email. You know about the heart chat, the
cloud website chinat dot com have a great heart band
Patti Leader by right.
Speaker 3 (05:07):
Welcome everyone, Thank you for joining us today. I'm excited
to have author Emily Falcon and publisher Anna Jaworski here
to talk about Emily's book From the Sidelines to the
Finish Line and how books can help advocate for people
with chronic illness sins. Let me start by introducing Anna
and Emily. At seven weeks old, Emily Falcon had a
(05:30):
heart attack and was diagnosed with an anomalous origin of
the left coronary artery from the pulmonary artery called al kappa.
This led to two open heart surgeries at six and
thirty five. She loves travel and animals, both of which
have helped get her through difficult times. Emily is now
an athlete who participates in a weekly run club and
(05:52):
runs five K races throughout the year. She hopes to
inspire others who have had health limitations to never waste
a moment and not let life pass them by. Anna
Jaworski is a heart mom to a single ventricle survivor.
Her first piece as a paid author was in critical careners.
After writing her first book, Hypoplastic Left Heart Syndrome, a
(06:16):
handburk for parents, she was unable to find a publisher
willing to take it on, so she and her husband
Frank started Baby Heart's Press, a publishing company devoted to
briding resources for the congenital heart defect community. When not writing,
helping other people write their stories, or podcasting, you can
find Anna in her garden tending her roses or other flowers.
(06:39):
Or maybe you'll find her with Frank drinking some iced
tea in their dinosaur garden with their fur baby Buck.
Wherever you find her, you'll be sure to be invited
to stay for tea and a chance to play a
game or tell a story. So welcome. I'm so happy
to have both of you with us. I wanted to
start with Emily talking about her journey with al Kappa
(07:01):
and why you wanted to get it out to others.
Speaker 1 (07:05):
Thank you, Jennifer for having me this great opportunity. You
already gave some of my history, but I've been around
a while, so it's a little long, but I'll try
and keep it short. As you mentioned, I was born
in nineteen eighty two and I had a heart attack
at seven weeks old, and although one in one hundred
babies in the US are born with a heart condition,
(07:26):
mine occurs in one in three hundred thousand babies, so
it's pretty rare. Doctors weren't so sure how to treat me,
so they waited to do my first open heart surgery
until I was six. I lived a pretty limited life,
but I did lots of normal stuff too. I went
to school, but there was no sports with other people.
I had trouble with stairs and hills all the time.
(07:46):
I took medication, I went on family vacations, and I
participated in things I was interested in with restrictions and
tried the best I could, and things were pretty normal
for me. I was twenty eight and I came back
on a trip to Morocco and I experienced an abnormal
heart rhythm called aphib That kind of started my adult
journey with more heart problems than I already had.
Speaker 2 (08:09):
I had a few minor.
Speaker 1 (08:10):
Surgeries to keep that away, but it came back when
I was thirty five. In twenty eighteen, doctors decided I
needed to have a second open heart surgery. They replaced
my valve and that changed everything. Once I was recovered,
I could do more than ever before. Stairs were a
little bit easier. My neighborhood hill was so much easier.
(08:31):
I could go up without becoming so breathless, which was
totally new to me. And these are things people I've
experienced their entire lives without difficulty, but I was just
learning about. I was able to start running for long distances,
and I'd never been able to do that before. I
decided I'd like to run into five k race in Boston.
The big deal is the Boston Marathon, but of course
(08:52):
I could ever do that the same weekend the same
association that puts that on as a five k. So
eight months after my surgery, I ran in that race.
I never stopped to walk or rest, which I'm most
proud of from I know. And I just keep trying
everything new and seeing if I can do it. And
from doing that, I realized I should write a book
(09:13):
to try to inspire others so that they don't take
their health for granted and try when they can and
not let opportunities pass them byd.
Speaker 2 (09:21):
I love that, Anna.
Speaker 3 (09:23):
Do you want to talk about your journey and your
publishing company?
Speaker 2 (09:28):
Yes? Thank you? You did tell a little bit about
it at the opening, like Emily's dead, which is great,
but my child was born with a single ventrical heart,
so a condition it's considerably different than Emily's. It's the
fourth most common artifact. Doesn't matter of that my child
had to have surgery within the first couple months of life,
(09:49):
or else my baby would have died. So my child
has had three open heart surgery and has had some
of the same situations that Emily had with the m
As Emily had a fan, my child had a different
kind of problem. But just like Emily, my child's relations
and it's very common in the cogital heart defect world
(10:12):
for people to need certain medications or other procedures aside
from just the open heart surgery. But my child's a
little bit younger than Emily, not much. She just turned
thirty in August, so she's doing greater. Just like Emily.
She's an inspiration and I felt that her story needed
to be out there just the same way Emily did.
(10:34):
It could inspire other people, It could give people an
opportunity to know that these people can grow up, they
can grow to have happy, productive lives. Sadly, even today,
in twenty twenty five. It's hard to believe, but there
are still women who'll find out in utero that their
baby will have a single ventricle home and they're encouraged
(10:55):
to abort them. I wanted people to know that these
people grow up and lives happy lives and give people
a chance for life. Right.
Speaker 3 (11:05):
Can both of you talk about why literature helps in
the process of advocating for specific communities and in this case,
people fighting chronic illnesses. From my point of view, I
think invisible illness hasn't talked about lunch, and there's often
stories about people with cancer or other illnesses that are
more common, or an adult who's had a sudden life
(11:28):
changing event, and not so many who have grown up
with chronic illness like I had an and his child.
Speaker 1 (11:34):
You often feel very isolated and alone, and I think
this is the best way to get our stories out
without having the pressure of sharing things we don't want
to because we're writing what we want to say and
we're in control of it. I hope it empowers people
to get our voices heard.
Speaker 2 (11:50):
I love that Emily and Emily wrote for the last
book that I published, called The Heart of a Heart Warrior,
which my daughter also wrote for I love that book
because it's all stories only by adults who were born
with heart defects. And I agree with Emily, it's an
invisible illness for the most part. Le sure at the beach,
(12:10):
the boke in, stay your jokes. And as a mom
who had a baby thirty years ago, there were no resources,
there was no Internet. It's hard to believe that I
had a baby before the internet was really aside from
within United States government. By putting together my first but
a couple of plastic left heart Syndermambic of Parents, which
(12:31):
did not become the best seller, but it gave me
a chance to share my child's story. And in the
second edition I had another who wrote her child's story.
My child had a staged surgical procedure that her child
had break planned, which is another option for babies were
(12:53):
born with single ventricul hearts, and so I wanted to
have those perspectives in the book. I received so many
cards and letters and photos of children. I think probably
the cards that mean the most to me are the
ones friend the women who told me I was encouraged
to abort. Your book gave me hope my child's doing great.
(13:16):
I've received graduation pictures and cards throughout the year, seeing
and grow up. At Christmas, my husband and I said
when we decided to self publish herst book, if it
helps olly one family, it'll be worth any expense, because
we just wanted to give that picture of hope to
somebody else.
Speaker 3 (13:37):
And I think it's really important that it's all about visibility.
It's not something you see. One of the girls I
was friends within junior high in high school, she had
had open heart surgery. We all knew it because she
had a scar. But I'm going to be honest to
say it was nothing we ever talked about with her.
(13:57):
It was just this is the thing that she's gone through.
I think visibility is how you get information out and
how people actually understand, not something we talk about a lot.
Even when those chronic illnesses are something like asthma, we
as a culture keep those things personal.
Speaker 2 (14:18):
I think everybody wants everyone to be fine. So I
know when I brought my baby home after the first
open heart surgery, we knew that there would be a
second surgery within months to a year. It was not
going to be a long time like Emily Wait six years,
which just wow. I mean my baby wouldn't have survived
that long. But I remember after the first surgery, he
(14:39):
told her family there will be one us to be
two more surgeries coming up. Everybody said, yeah, but the
baby's fine now, right, And I think that's so true.
I have a friend whose childhead as another invisible illness,
and that's the way people would treat her. Or she
would regard to the emergency what she mean, and then
(15:00):
and she would come home and everyone would say, but now,
Shane's fine, right, And it's a lifelong condition, just like
congenital heart effects. They're okay for today, but something could
happen and we just have to be alert. You are
talking about this, Jennifer. Yes, so there is an invisible condition,
but he's not a lifelong condition. And if we don't
(15:20):
talk about it, we miss opportunity to educate ourselves, and
we might miss an opportunity to save a life. And
that's a pity, because anybody can learn CPR, and there
are chances that you might need to use it when
you never think you would, like in a school or
at a football game. And we've all heard tragic stories
(15:43):
where people are not paid. Thankfully, because enough that these
situations have occurred. There are now nonprofit organizations providing AEDs everywhere,
and you see them in the airport, and you see
them all over the place, even in the churches, and
it's very simple to you is you turn it on
and there's a little voice that speaks to you. So
(16:03):
we are becoming a more literate society about because jobhart.
I always say, my conditions can be managed, not cured,
because they want you to be better. And I think
in television and movies there's no accurate portrayal because even
a show is popular as Gray's Anatomy, one of the
main characters had heart surgery. She had a scar for
(16:24):
one episode and then never again. Everything was fern And
then recently the other doctor had a valve replacement, just
like me. She had some restrictions at work, but then
she was backlifting people and doing crazy things that I
know were not allowed after researcher.
Speaker 3 (16:40):
That's called them lack of research.
Speaker 2 (16:44):
That's too bad, because that's a fist opportunity to let
people know that it's okay to have this valve surgery,
it's okay to have these restrictions, and you're not expected
to go back to exactly the way you were right away.
That disappoints me that that happens. I know there was
one popular TV show about twenty five years ago or
(17:07):
so where they contacted me and they told me that
they had bought a copy of my book and they
were portraying a child with hypoplastic tart syndrome. But I
lived in the country and I didn't have cable, never
got to see the pere agree. But I'm hoping that
they did it accurately. I don't know. It was such
a long time ago. It's funny that you saw that,
(17:30):
and Marie, I'm sure that really caught your attention.
Speaker 1 (17:33):
Yes, especially because the doctor had developed surgery was a
hard surgeon in the show and she doesn't want to
follow any of the rules or do anything.
Speaker 2 (17:41):
She tells all the doctors and nurses make the worst patience.
And I'm married to a nurse, so I can totally
say that.
Speaker 3 (17:51):
Oh, that's great. But it is interesting how there's always
this conversation about how inaccurate those shows are, and for
some people that is the only visibility that they see
for these kinds of things. We had an author visit
last week with someone who works at the Crime Lab
and Fort Worth she writes very gritty murder mysteries. We
(18:14):
were talking about how people's understanding of what happens in
a crime lab is CSI and how unrealistic that is.
They don't solve cases in thirty minutes, and that most
of the crime lab work is not the flashy stuff
(18:37):
that's on CSI. So it's very similar, right, what we
consume as media around health are these shows that while
maybe they're saying all the right word, it's not always accurate.
And it's why other forms of media are important, right,
(18:57):
Why biographies and those sorts of things which tend to
be a bit more easier to understand than just straight nonfiction.
You're getting to know a person, and those sorts of
things are really important for people to relate to and understand,
but also help if you're suffering from those sorts of things.
Speaker 2 (19:18):
I think that's what makes Emily's memoir so important is
she gives us a snake peek, not at thirty minute
with a wife. We get to see years, and we
get to see how she was affected as a child
and a teenager. We all know when kids go through
those teenage years that there can be some challenges, but
(19:39):
when you have a child with the chronic guillness, those
challenges are exacerbated, and then to see her go into
young adulthood and to lotsom the way she has as
a parent of a child with a heart defense, a
memoir like Emily Who's Purio.
Speaker 5 (20:04):
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,
(20:24):
please visit our website at www Congenitalheartdefects dot com for
information about CHD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
(20:45):
are listening to Heart to Heart with Anna. If you
have a question or comment that you would like addressed
on our show, please send an email to Anna Jaworski
at Anna at Heart to heartwith Anna dot com. That's
Anna at Heart tooheartwith Anna dot com. Now back to
Heart to Heart with Them.
Speaker 3 (21:05):
What can our audience do in their communities to advocate
for themselves and their loved ones if they're dealing with
these types of illnesses, and what can those of us
who don't have this struggle also do.
Speaker 1 (21:19):
I had two ideas about how to help. The best
thing I did as a kid was go to Openheart's camp,
where I got to meet a lot of other kids
who had heart surgery or had heart conditions, and it
was great. Did not feel different and feel included and
not even have to talk about anything if I didn't
want to, or if I did, I didn't have to
explain because they totally knew everything I was saying without
(21:40):
having to say much. If you in a community, you
could set up an event maybe or a group where
people can just come together and talk about their condition
or not and just know that everyone there can understand
if they want to talk about it. It could be
as simple as just going to the movies together and
then going out for coffee after or a day in
the park and you could go on a walk if
(22:01):
you feel like where you could just sit if you
don't feel up to it, but you'd still feel everybody
around you and maybe make a friend or two and
the other thing I thought if more directly, if you
know someone is to join them at an appointment if
they ask, or if they don't ask, maybe offer, because
it can be really overwhelming at those appointments when you're
alone and it's hard to listen and take everything in
(22:23):
and speak up and ask questions if you're nervous or
just confused. So your partner friend could take notes for
you or ask the questions you're too afraid to ask.
If you prepare ahead, or just sit there and be
there with you, so the person knows they're not alone
and they can ask them if they remember something, they
might later help them write an email with follow up
(22:44):
questions later if that's helpful to them.
Speaker 2 (22:47):
Those are all such great suggestions. And if you're the
friend of a child who has a chronic illness or
a condition, it's an invisible illness. I think that there
are work rapes now like you ever before. I actually
helped start a support group in Austentechnis. Even though I
live outside of Boston, that was the closest big city
where children were treated. I had to drive there for
(23:10):
my child pediatric partyologists. And that's why another heart mom
and I started a support group there. Not everybody has
the wherewithal to start a support group, but luckily you
don't have to because now thanks to Facebook, creddits, and
so many other online platforms, you can find support. If
you want support, you can find it. So many more
(23:31):
of the hospitals offer support groups for parents and families.
But in addition to that, there are also nonprofit organizations.
Like Emily said, there are camps for children. There are
also camps that the whole family can go to, which
is awesome because if you're the sibling of somebody like
Emily or my daughter Hope, sometimes the siblings feel left out,
especially if they're sibling is having multiple surgeries or they're
(23:55):
dealing with long hospital days. The healthy children off get overlooked,
not because they're not important, but because they're not facing
a life threatening condition. And so it's lovely that there
are nonprofits that put on camps for the whole family.
And then those siblings go off and just like Emily
would say, you don't feel alone because they're with other
(24:17):
people who also have a sibly who has a condition,
and they can talk and they can have fund together.
There's so many different organizations, and I have a nonprofit
website that has a list of some of the different
nonprofits that provide those opportunities for children with congenital art defects.
So yeah, I think just reaching out to others you
(24:40):
don't feel alivee so you can do the best job
and can raising a child. We don't want to raise
our children wrapped in bubble wrap. That is not the
way we want to do things. And in fact, it's
funny because my child surgeon said to me when I
asked about restrictions back in the early nineteen nineties, he
said to me, Anna, we did not save your child's
(25:02):
life so that she can wrap her and bubble wrap me.
Saved her life so she can live a full, meaningful life.
And that means letting her go out and do taekwondo
and do things that other kids for age would do.
That's what.
Speaker 3 (25:17):
I love all that. The biggest thing is connection, right,
It's about finding your people and connecting with them and
figuring out ways to create relationships. And Emily, what you
were talking about having someone go and take modes, it
made me think of some things that you had written
in the book about how when you were a kid,
(25:40):
the doctors really wouldn't talk to you, and so you
didn't really understand and then as you got to be
an adult trying to navigate that because you didn't have
all the historical information. Can you talk about that and
do you wish that things had occurred a little differently
when you were younger.
Speaker 1 (25:59):
That's a hard question. In the beginning, that my parents
were by every single appointment, every single test, and all
those kind of things, So doctors just spoke to them
and I might have heard it and paid attention, but
not really known much of what it meant. And I
wouldn't have known to ask a question or anything, because
my parents didn't ask very much either, because people just
don't question doctors because they're in charge, right, You do
(26:21):
what they say, unless it was something they had to ask,
of course they did. Also, there weren't really that many
big emergencies after my first surgery, so there wasn't really
anything to discuss except sure of this test and we'll
stay on this medicine. I feel like I became more
conscious of how what was going on, maybe in middle school,
and that doctor I had was like very important. He
was constantly interrupted with phone calls and knocks on the door,
(26:43):
so it was very intimidating to want to talk to
him and ask anything. He also just went to a
checklist every appointment without really looking at me, being like,
you're not doing drugs, you're not smoking, instead of seeing
me as a person, like, well, what do you want
to do?
Speaker 2 (26:56):
How can I help you?
Speaker 1 (26:58):
Those kind of questions were never I wasn't gonna say anything,
but if he tried to have me have a blood
test or something, I might have said why, because I
didn't want that. After college started, I started going to
these appointments alone, and he had less student doctors in
the room, so it wasn't so much of a show
of look at what she can do, look what she's doing.
(27:18):
So I started to be able to talk to him
more because there wasn't as many people in the room.
Speaker 2 (27:21):
Which helped a lot.
Speaker 1 (27:23):
But he never rushed us out of that room or
made us feel our appointment time was too short, which
I'd highly appreciated. I wish doctors did more of today
because everything is so much more overworked. I have a
new doctor now though, because he retired, and she knows
I don't like any.
Speaker 3 (27:37):
Of that stuff.
Speaker 2 (27:37):
So the student doctor comes in for.
Speaker 1 (27:40):
Ten minutes in the beginning to do quick whatever, and
then they're gone and it's just us from then on.
I feel much braver to be able to talk to
her and ask her things. And I still feel that
fear to ask, but I also know that she's much
more willing to answer, and she tries not to rush me.
Speaker 2 (27:56):
I want a.
Speaker 1 (27:56):
Relationship to be good because this is another It's not
like I can just walk down the street. You go
to any hospital and to any other doctor. I have
to have her. There's no one else who can help me.
So you have to build the two way street and
make sure everybody's happy with the relationships. If it was
more common illness and you could go anywhere, maybe I'd
be much more defensive and do things differently. But you
(28:17):
just can't. When you have a rare illness.
Speaker 3 (28:19):
You have to stick with what you've gone When it's
what you want from any relationship with a doctor, whether
that chronic illness or not. You want to be able
to have that two way street. You want to be
able to talk to people. I'm an athmatic, so I
am very unhappy when I have to go to urgent
care for a cold, because I understand that the cold
(28:44):
is different for me than it is for most people.
And sometimes my insurance is like, no, you have to
do the teledoc, and I'm like, I don't want to
do the teledoct because they are not going to give
me what I need because they don't have my file.
We haven't built that relationship. I agree, that's something that's
missing these days.
Speaker 6 (29:04):
You need to be able to have that relationship and
that understanding with any doctor that you see, because otherwise
they don't get all the information that they need, and
you also don't get all the information that you need.
Speaker 2 (29:17):
We live in a difficult time right now. At our hospital,
you have a quote unquote PCP, a primary care physician. However,
because people are so busy, it's very common for you
not to see the same person twice. And when you
are like me and you're relatively healthy, it's not a
big deal. Yeah, I had my tugs was taken out,
(29:38):
I broke my arm when I was seven, That doesn't
really matter. When you're talking about open heart surgery and
different medications and other procedures you've had in only different situation,
and those kind of people need to have the same doctor,
not just from appointment to appointment, but from year to year.
And I'm thankful that now with the electronic record system
(30:00):
that we have, it's easier for doctors to share information
than ever before. But even that is a problem for
people like Emily because what they were born before there
were electronic files, and so a lot of those own files,
maybe one or they have binders of information at one
particular hospital, but to try to get that at another
(30:22):
hospital is a real perror.
Speaker 3 (30:24):
It's really difficult.
Speaker 2 (30:26):
And any parents who are listening to this, if you
can get a copy when your children are young, keep
a copy of just not every single visit, but you know,
certainly surgical notes and any special things that happen like
pacemaker insert or an ablation, keep a file of that,
because if they don't have it electronically, you may be
(30:50):
the one who to bring the information to another facility,
especially if you travel. Emily loves to travel. It's just
my daughter, Hope. It's scary to think about going to
Japan or going really far away from home when something
could happen.
Speaker 3 (31:06):
How do you handle that, Emily?
Speaker 1 (31:07):
Since you do travel a lot and you do have
that so I'm a big researcher and I do a
lot of research owner trip. I don't really go on
a whim or usually take about a year to prepare,
and I make sure that there's some kind of hospital there,
ask the cardiologist if they know anyone or where they
want me to go. I bring with me a copy
(31:29):
of my EKG. And if you don't know me and
you look at my EKG, you think that was very sick.
But that's normal for me, and a random doctor is
not going to know that, and they're going to freak out.
Speaker 2 (31:39):
So I bring the.
Speaker 1 (31:42):
EKG and then the most bit recent after visit summary,
which lists my medications in what the doctor has just said,
and it has my weight and all that, so something
terrible's going on, they can see what's going on. I
also wear a medical Alert necklace, which any person can
call for free anywhere in the world and get all
my history or connect to the doctor if I can't talk.
(32:02):
I also carry it to.
Speaker 2 (32:04):
Do list of what I want to do for fun,
but on that scene, with say.
Speaker 1 (32:07):
All my doctor's phone numbers and what to do if
I'm with a friend, I point to it and see
if something happens then I can't talk, just point to this.
Speaker 3 (32:15):
There really is about.
Speaker 2 (32:16):
Well be pared. Yeah, I thought that's impressive.
Speaker 3 (32:19):
No.
Speaker 2 (32:20):
Congenital Heart Association has on their website a list of
place ins where other specialists are in the world, so
that definitely helps. Again, it's says connections, Jennifer. Knowing where
you can find that information it does make a huge difference.
I have a thumb drive from my daughter that has
her last vertical notes on it, and I sent her
(32:42):
to college with that. What is to make sure of
that thing that when she had just had surgery just
the October Beport, she went to college and so everything
was still fresh and that made it that information.
Speaker 3 (32:58):
But I know you like to it's so solid travel, Emily,
so talk about why you do that, why you want
to do that, other than just enjoying travel.
Speaker 1 (33:08):
I used to go with my sister, but now my
adventures are a bit too much for her, so I
go alone rather than not go at all, because it's
like I say, don't waste a minute. You don't want
to miss out on something when you could have done it.
And I would definitely regret not going on these trips,
even if I'm alone.
Speaker 3 (33:24):
I go for a few reasons.
Speaker 1 (33:26):
Besides learning about new cultures and seeing new animals and
all those fun things and foods. It's like a break
from being here the hospital, knowing that I'm not thirty
minutes away. I'm actually away from them for a while
and they're away from me, which is nice for both
of us. It's like testing myself, proving to myself I
don't need them for a little bit and I can
do it if something should happen. I think I can
(33:49):
trust myself to take care of myself the best I can,
which is also a nice test. So after procedures, I
go on little mini trips to New York, which is
four hours away by bus. Then I go on the
overseas pring trips because that's not as easy to get
home from. I always test it first to make sure,
but it's really like the feeling of freedom and living.
Speaker 3 (34:10):
You have a destination that you would say has been
your favorite a visit, No.
Speaker 1 (34:15):
I think everywhere I go has something special, so I
never say there's a favorite, because there's always something that's
more special at one place than the other that you
can't compare.
Speaker 7 (34:25):
I love that this content is not intended to be
a substitute for professional medical advice, diagnosis, or treatment. The
opinions expressed in a podcast are not those of heart
to unite the globe, but of the hosts and guests,
and are intended to spark discussion about issues pertaining to
congenital heart disease or bereavement.
Speaker 3 (34:51):
All right, let's flitch gears a little bit. We know
we always have a few aspiring writers in the audience,
and since you am both a writer and a publisher,
it's the perfect time to talk about both processes. So Emily,
why don't you start talking about your writing and research
process and then talk about what a publisher is looking
for and what you need to know when trying.
Speaker 2 (35:12):
To submit your work. I never kept a journal.
Speaker 1 (35:16):
My father did when I was a child, a lot
of his memories or would start the book, and after
that I wrote down everything I could remember at once
and all the details, and it was the weeding it
and making it more of a story and dialogue. My
workplace as an editing center, so I went there for
writing help with different people, so like to get different opinions.
(35:37):
My family and friends help, and then I tried to
find a publisher. I sent out query letters where you
should try and get them interested in your story, and
that didn't go so well because it's such an niche
audience with that mainstream, I kept trying to make connections
with people, and then what are my connections directing me to?
So the time I met her and she helped edit
(35:59):
and meet the great suggestion and everyone loves the best
is the InterVoice in the book. And without that, not
as many people would connect to this story. She was
when the editor she helped after every wrote with the InterVoice,
and then I had like a paid editor and all
the professional graphics and all those things to put it together.
Speaker 2 (36:17):
So if you're interested in what publishers are looking for,
we old Mary Kayklein all the props for bringing us together.
She's a good friend of mine and her daughter was
born with the Kenjobahart defect, and she knew that I
had written some books and published books. I had decided
right before Emily reached out to me to change my
(36:38):
publishing company to a hybrid publishing company where I help
other people their books. It was such a delight to
get Emily's book. She had exactly what I was looking for,
which was somebody who was passionate about their story and
somebody who was willing to work with publisher. So many
times people write a story and they think, Okay, that's it.
(36:59):
I'm done. I'm not going to make any changes, don't
ask me any more questions about it. And if it
doesn't draw you in, and if it doesn't feel authentic,
then people are going to want to read it. And
one of the things I love about Emily was when
she reached out to me, I saw she had such
a great story. I just needed some reframing. And it
(37:20):
was scary for her because I talked about her completely
rewriting her book. It's a completely different way. It's just
that well, some of the other editors suggested something kind
of like that, but we just didn't know how to
do it. And so with her permission, I dissected her
book and helped to put it back together and her
a ton of questions. In unique position, because I had
(37:43):
raised somebody with a heart defect, I could ask her
questions that maybe another publisher wouldn't think to ask. If
you're writing a book and you have a great story
and you have as much, don't come to me because
my specialty is the genital heart effects. But there are
resources in the library that you can use that will
help meet you in the right direction. For another publisher,
(38:06):
who deals with that's book, So that's the kind of
publisher that you would out to, or other medical conditions.
You want to make sure first of all, that you're
writing a great story. Secondly, don't be married to your book,
be will laying to be flexible with it because the
people who are helping you, they have your best in
truests at heart, but they also have the audience best
in trists at heart. You want to make this a
(38:28):
team effort and then take the book to right place.
You wouldn't ask somebody like a university press to publish
a mystery. That's just not where you would go. So
you want to make sure that you're querying the right publishers.
And I think that's what made Emily's in my working
relationship so perfect.
Speaker 3 (38:50):
That's all great advice, Emily. Are you more of a
rite by the seat of your pants sort of person
instead of plotting everything out? Is that safe to say?
Speaker 2 (39:00):
I think so?
Speaker 1 (39:01):
I just wrote it chronologically. I also kept thinking of
In Green Gables, which is a movie I really liked
in book, where she always says right what you know?
So that's what I just kept telling myself.
Speaker 2 (39:11):
I love that.
Speaker 3 (39:12):
That is absolutely the best advice, write what you know.
Is there something you'd like to mention that we haven't
talked about so far.
Speaker 1 (39:21):
I would just say it be open to people you meet,
and you never know what someone's going through, being kind
and listen and don't judge him. If you know anyone
that would appreciate my book, please spread the word.
Speaker 3 (39:34):
We definitely have copies to check out at the library.
Speaker 2 (39:37):
Anna, do you have anything, Well, it's w first when
we're recording this, which means it's the beginning of heartmund
here in the United States or anybody who is apply
the United States, maybe not, but here in the United States, Dury.
In February we celebrate heart month, and now I'm trying
to say is special to a lot of people. But
in the heart world, could you have a heart defect
(39:58):
to war I think it's perfect, Jennifer that you're doing
this interview on a first day apartment, because this book
is particularly imporier for people who want to know more
about artifacts.
Speaker 3 (40:09):
I will say that the rescheduled date worked out better
for us. We were supposed to do this a couple
of months ago. I'm going to just remind if you
have a question for those ones in the Honorty from
in the chat. We haven't gotten any so far. My
final question always is is there something that you're currently
working on that you'd like to talk about, whether that
(40:30):
be a new book or just a new endeavor. I
don't have a new.
Speaker 1 (40:35):
Book, but I do have a big event coming up
at the Boston Museum of Science where I'm going to
be on a piano with an astronaut because I thought
it'd be nice because we can discuss overcoming challenges together.
So that's contaking a lot of my time working on it,
and it's in May.
Speaker 3 (40:52):
I love that that would be some fun awesome.
Speaker 2 (40:56):
I will be doing a presentation for Cardio PAB twenty twenty.
I'm super excited about that. It's a virtual cardiology comfert,
so I will be presented to cardiologists and my presentation
is will be on the pump and it's to give
the doctors sneak peek at what it's like for their
patients long after surgery and considerations they need to keep
(41:18):
in mind. Then I'm going to be on a panel
in Austin in April where we're going to be cooking
advocacy and technology, which I think will be fascinating because
I'm also a podcaster and Sick Theologist is going to
be cooking about different ways we inform our community about information.
I'm super excited about that. And I'm writing a memoir
(41:42):
about my daughter. My daughter, Hope is trans and I'm
writing about what it's like to be the mother of
a transwoman who was born with the cogenital heart effect.
We're all keeping busy, which is super exciting. I think
twenty twenty five is an exciting year for all of us.
I love that it doesn't look like God new questions
from the audience.
Speaker 3 (42:01):
I wanted to add earlier when we were talking, and
I should have put this on my slide show of
what's coming up, and I'd forgotten about it. You'd mentioned
about the importance of people knowing how to do CPR.
So for those of you in the audience, I'm gonna
drop a link in the chat. We are offering CPR
classes at the library this month and it's hard month,
and I'd forgotten to put that on my slide, So
(42:22):
that was the reminder to me. The link that I've
put in the chat is a list of all the
classes that we have going on in the library.
Speaker 1 (42:30):
This month.
Speaker 3 (42:31):
We'd love for you to come and get some great skills.
They're taught by the Fortworth Fire Department and you should
get lots of great information. I want to thank Emily
and Anna for sending some time with us today. I
hope you enjoyed the conversation and it gave you some
food for thought and maybe some things that you think
(42:52):
you can take away and do. Thanks again, Anna and Emily.
Speaker 2 (42:56):
Thank you so much. Jennifer, this has been such a question.
Thank you have a great day.
Speaker 5 (43:16):
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. Heart 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