August 28, 2025 • 45 mins
Tyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community.
"I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.
Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.
Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.
For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.
Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.
Helpful Links mentioned during this episode:
Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8A
Kristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916
Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-session
Link to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
"I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.
Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.
Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.
For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.
Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.
Helpful Links mentioned during this episode:
Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8A
Kristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916
Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-session
Link to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I've been told by people that are just by looking
at me, they wouldn't know that I had a heart defect,
which is a good thing generally. Even my cardiologist told
me last time I saw him that if you saw
me on the street, you wouldn't know.
Speaker 2 (00:12):
I had a heart defect.
Speaker 3 (00:20):
Hello, my friends, and welcome to Heart to Heart with Anna.
I am Anna to Warsky, a heart mom to my
amazing daughter who is post spontane and just turned thirty
one years of age this month, August twenty twenty five.
I'm so glad you're joining me today. Before we dive
into our conversation with today's.
Speaker 4 (00:39):
Guest, Tyler Shadaf, a single venture cool survivor, academic advisor,
and passionate advocate for the kijab a heart defect community,
I'd like to take a few minutes to share the
story of another heart mom as some exciting news for
our community today. I want to share the story of
(01:00):
my friend Christi Pania. Christy is a heart monk and
a fierce.
Speaker 3 (01:04):
Rare disease advocate. Her son has Barth syndrome, a mitochondrial
disease that is always fatal without treatment. Christie has seen
firsthand how a drug called de lepromide has transformed her
son's life. Families have called it a miracle. The science
is strong, the safety is clear, and children are alive
(01:25):
today because of it. And yet the United States Food
and Drug Administration, often called the FDA, recently denied a
reconsideration request for this drug's approval. To make matters worse,
the company that produces it is collapsing. Imagine what it
feels like to watch a treatment that is saving your
(01:45):
child's life slip through your fingers, not because it doesn't work,
but because of bureaucratic red tape. Christie is in giving up.
She and other families are preparing to go to Washington,
d C. In peaceful protest. As Christy said in one interview,
it's not a matter of if this disease is going
to kill my son, it's a matter of when. We're
(02:08):
just not going to give up right now, These families
are urging oversight from the United States Congress, the Secretary
of Health and Human Services, and the Commissioner of the FDA,
and they are asking all of us to help too
by amplifying their voices, sharing their story, tagging lawmakers, and
(02:28):
keeping the pressure on I wasn't able to record a
full episode with Christy this time, but I reached out
to other podcasters. I'm thrilled to say that the team
at Share the Tea Tuesdays immediately agreed to feature Christie
and her story. I'm so grateful her message will be
heard on a larger stage. If you have the ability
(02:49):
to help Christie and others living with Barth syndrome, I
encourage you to raise your voice, share Christie's story, speak
up about the importance of access to life saving treements,
and let lawmakers know these families cannot be ignored. If
you'd like to connect directly with Christy, reach out to
me and I'll be happy to put you in touch
(03:09):
with her. And if you'd like to learn more about
Barth's syndrome itself, I'll include a link in the show
notes to the earlier episode where Christy taught us about
her son's condition, Barth syndrome, which includes a congenital heart defect.
Now on to the news. In other news, Boston Children's
(03:36):
Hospital is hosting a free event for single ventricle families
a September twentieth, twenty twenty five. This special day will
include educational seminars, updates on advancements of care, opportunities to
connect with other families, and even free access to the
New England Aquarium. Lunch will be provided and this Source
(03:57):
team will be in attendance.
Speaker 4 (03:59):
If you'd like to to learn more a register for tickets.
You'll find the link in the show notes. Next up,
my amazing guest, Tyler Shydock. This content is not intended
to be a substitute for a professional medical advice, diagnosis,
or treatment. The opinions expressed in a podcast are not
(04:21):
those of Hearts 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 3 (04:31):
Today's guest is Tyler Shydock. Tyler was born with hyplopeistig
lectart syndrome. He holds a bachelor degree in political science.
It currently works as an academic advisor at the Community
College of Allegaty County. Tyler is also pursuing a master's
degree in education at the University of Pittsburgh. In addition
to his academic and professional pursuits, he is involved in
(04:55):
a single venture call Patient a Planning Committee and as
part of the mpc QA I'd See FON Committee. Wayne
Tyler is not working or studying. He enjoys watching and
playing sports, particularly attendee Pittsburgh Pirates games and participating in
local slow pitch football leagues. He also enjoys unwinding by
(05:16):
watching movies and television shows. Tayler contributed an essay to
the Heart of a Heart Warrior about his experience with
vocal court paralysis after surgery, and he is passionate about
raising awareness and supporting the single ventrical community. Welcome too
Hard to Heart with Theanna Tyler.
Speaker 2 (05:35):
Thank you for having Mienna.
Speaker 3 (05:37):
It's absolutely my pleasure to have you here as someone
who was born with a single vtrical heart and who
now serves on the planning committee. What unique perspectives do
you bring to organizing Single Vetrical Patient Day and how
do you ensure that the voices of patients and families
are truly represented in that event's programming? And isn't it
(05:59):
ON one now?
Speaker 1 (06:00):
We changed the name to SV one Single Ventrical One,
combining the two because the NBCQIC was pre Fontan and
FON was Postfontan, so they kind of combined into one
starting life.
Speaker 2 (06:14):
First of twenty twenty five, they officially.
Speaker 1 (06:18):
Joined together as far as the patient day and the
whole event go. I'm on the planet committee for both
patient day and the whole event, So I think my
role as a patient in the bigger event Bigger Day
is going to make sure patients get thought of, because
that wasn't always the case with these congenital hard conferences.
(06:40):
It was often about doctors and nurses and how we
can better treat the little kids as they're going through
the surgeries, and not so much about how the adult
patients are doing. So I think my role is making
sure the other planners are thinking of how the adults
can be served as well. And then for the single
(07:01):
ventric patient day itself, there's a group of I think
five of us that are on the planning committee, and
so we try to find different topics each year a
matter of interest to single legrical patients that are fourteen
and up. It's kind of our age group. So this
year we've got a few different ideas. We're still working
on getting everything set, but we've got a handful of
(07:24):
ideas that are We've done some of them the past,
but they're ones that get brought up every year as
the things they want to talk about and learn more about.
So we bring in doctors, we bring in other patients
that have gone through similar things. We try to serve
our community as best we can with the sessions we have.
Speaker 3 (07:42):
I wanted to go and I wasn't able to and
I'm binmed the bit. I want to go this year.
So do you already know when it will be occurring
and what city? Because it has moved around in the past,
that's the main.
Speaker 2 (07:56):
Yeah, we usually pick a difference city each year.
Speaker 3 (07:58):
That's not up to me the choose where we go,
but Lewis last year.
Speaker 2 (08:04):
Was in Saint Louis.
Speaker 1 (08:04):
Last year, it's been in Chicago a couple of times.
It's been in ann Arbory a couple of times. But
this year it's gonna be Indianapolis, Indiana, And I believe
the dates are October ten and eleven, which is Friday Saturday, like.
Speaker 2 (08:18):
The second week in October.
Speaker 5 (08:21):
Who generally goes to this it's a lot of medical
professionals as the biggest group, cardiologists, nurses, other people in
the field, and then there's also a lot of parents
and patients.
Speaker 1 (08:33):
I think last year we had thirty to forty patients
and there are some family members, houses and significant others
have joined in the past. Last year we had a
session on parenting and how single ventrical patients deal with
the different ways to have children. A lot of the
spouses were there for that as well.
Speaker 3 (08:54):
Yeah, have you considered having a session on parenting an
adult single patient?
Speaker 2 (09:01):
That was something we tried to get in the schedule
for this year.
Speaker 1 (09:04):
I'm not sure it's going to work for this year,
but hopefully next year we'll have a session on how
to parent a single ventric child all the way up
to adulthood.
Speaker 3 (09:13):
That's all what I know. I mean just focusing on
being a parent of an adult, single ventricle child, because
it's very different raising a child to adulthood. There's so
many different things that you have to go through, and
a talk like that is probably going to focus more
on how to transition them to being responsible for their
(09:35):
own care and blah blah blah. I'm talking about once
you've already done all of that, and now your kid's
thirty or now your kids fifty. Trust me, as a
parent of a thirty year old, it's a very different
experience and I think there haven't been a whole lot
of us parents who have made it that far. We're
a fairly small cohort. But I think there are certain
(09:59):
things things that we need to talk about or we
need to let the medical community know how we still
want to be involved. And I think it's really addressed
that much because legally we're not the patient yep.
Speaker 2 (10:16):
Once they turned eighteen or nineteen, famist seventeen.
Speaker 3 (10:20):
Yeah, even when Hope was in the hospital last time,
when she was seventeen, they wouldn't even talk to us
about certain things unless they got her permission and we
were all in the room at the same time, even
though she gave them permission verbally beforehand, they wouldn't talk
to us.
Speaker 2 (10:35):
Yeah. I think part of the issue with that is
the sample size. It's so small.
Speaker 1 (10:39):
There's not a lot of people studying it or in
that position as opposed to the younger groups where there's
a lot more patients going through the surgeries in the
years after the surgeries, as opposed to us that are
thirty plus.
Speaker 3 (10:56):
Yes, you need to tell them. Anna Jaworski told me
she would like to come and she would like a
session like this.
Speaker 2 (11:03):
Yeah, I'll bring that to the group.
Speaker 3 (11:06):
Okay, we're out to the Greeks. See what they say.
I know I'm not the only one because that you know,
I'm friends with your mom, and I'm friends with a
lot of other people who have children who have survived
into their thirties and beyond, which is really exciting for us.
We were given such abysmal odds that you kids would
make it that I think it's left us all a
(11:28):
little dumbfounded. How awesome you guys have been doing.
Speaker 1 (11:32):
Yeah, yeah, I think we've been guinea pigs for a
long time and we're still guinea pigs some extent.
Speaker 2 (11:39):
Nobody knows at what stage to do what.
Speaker 1 (11:42):
Yet, when you get to thirty and such an individual
case by case basis who that it makes it difficult
to have any hard and fast rules.
Speaker 2 (11:52):
Want to get to this age right.
Speaker 3 (11:55):
So the npc QIC and fontan On Outcomes Network, I'm
so glad us that to ask me one those book
that you's here to say.
Speaker 2 (12:03):
Yeah, the SV.
Speaker 3 (12:04):
One were really known as the MPCQIC and Fontane Outcomes
Network emphasize sharing knowledge and build a community among care
centers and families. Can you describe a specific initiative or
a session it's planned for the final Vtrical Patient Day
that you believe will have a significant impact on attendees
(12:26):
and why we're.
Speaker 1 (12:28):
Still in the planning stages and we're still trying to
figure out which sessions we're going to do this year.
But I think overall, getting groups of patients together to
meet each other in person is always going to be beneficial.
Growing up, a lot of us didn't know other people
that were in the same boat as us. We saw
each other in the hospital every now and then, but
(12:51):
there really was no connection between patients when we were younger.
I know, I was in my mid twenties when I
first met somebody else who had HLI chess. That was
my age, which is a long time to go before
you meet somebody who has So you.
Speaker 3 (13:06):
Never went to any of the camps or anything like that. Nope,
I did not, and my daughter didn't either. She wanted
to go to regular camps. She did not want to
go to any of the hard camps.
Speaker 2 (13:13):
I always thought it was too healthy for things like that.
Speaker 3 (13:16):
That's what she said. That's what she's said.
Speaker 1 (13:19):
ESPN used to do the Make a Wish episodes I'm
a Sports Center each summer and my mom's like, you
should do one of those sometime. I basically told her
I was too healthy to do that, and now I
wish I had done it. But yeah, I think just
getting to meet each other has been such a blessing
for a lot of us. And each year we get
(13:40):
new people that come and they get walking to the
group just like they were there since the beginning. Everybody
I've talked to has said that's the biggest part of
going to these events, going to see each other at
these things from across the country. You get patients from Washington,
d C. And patients from Oregon and a and all
(14:01):
these other places across the country in Texas. Yeah, that
you wouldn't otherwise know maybe on Facebook or some place
like that, but you don't.
Speaker 3 (14:10):
I interviewed a young lady who came all the way
from Australia to attend the sv one this share, so
that was pretty cool. Yeah, so it's not even just
a national conference. You're getting people from all of the world, which.
Speaker 1 (14:27):
Zoom session as well, so I can enjoin on Zoom
and we've had people from all over the world attend.
Speaker 3 (14:34):
I love that. Have you ever attended the ACHA conferences?
Speaker 2 (14:38):
Have not attended any of those conferences.
Speaker 3 (14:42):
The adult because she had a Heart Association conference. I'm
surprised you haven't attended any of those.
Speaker 1 (14:48):
I've been very busy with school and work and everything else,
so sure time off.
Speaker 3 (14:55):
Yeah, I get that. Ever since COVID, things have been
messed up. Says haven't been put out the same way
that they were before, and yeah, I get it. For me,
going to the ACHA conferences, that was the highlight for
me was getting to meet people from all over the world.
(15:15):
A lot of them were people that we had never
met face to face, and this was our first time
to do that. That was exciting, and I'm so glad
that the SV one and a single Ventrical Patient Day
give people another opportunity to come together and get to
meet each other.
Speaker 2 (15:32):
Yeah.
Speaker 1 (15:32):
I met a lot of kids that were younger than
me growing up, just because my parents were well connected
with people. So every time there was somebody they knew
who had a trialed with card defect, they would always
call us and we'd always go meet with the family.
I thought it was nice to do good way to
reach out and give them some hope. But yeah, I
(15:54):
never really met anybody my age until I was in
my mid twenties.
Speaker 3 (15:57):
It's amazing. It's inspiring to me that your parents wanted
to present you as a picture of hope, just like
I did with my child. But yeah, it is lonesome
when you're always the oldest one. Yeah, that's what makes
it really powerful when you go to something like the
Single Ventrical Patient Day and all of a sudden you
(16:17):
meet somebody who's two years older than you. And you
wouldn't think somebody two years older than you is a
big deal, but it is a big deal when you're
talking about hypoplastic left art center.
Speaker 2 (16:26):
Yeah, yes, it is for sure.
Speaker 3 (16:29):
With so much still unknown about managing single ventrical and
fintiance circulation, how do you see events like Single Ventrical
Patient Day contributing to ongoing improvements and care and outcomes
for patients like yourself.
Speaker 1 (16:43):
I think the biggest thing is just making sure we're
on the radar of the cardiologists and the doctors and researchers.
They spend a lot of time focusing how to improve
the first three surgeries and improve the quality of life
within the first five years that they kind of sometimes
for that, there's adults that's very unknown, what's happening with
(17:04):
us at this point with all the liver stuff going on,
and I have some patients fac kidney issues.
Speaker 3 (17:11):
Because right now there's a huge focus on the liver.
But it's not just the liver that's affected. The kidney
is also affected.
Speaker 1 (17:17):
Yeah, yep, I think everything is affected, but I think
the liver is the biggest thing for me, at least.
I think the biggest thing just making sure we stay
in their eyes and their research and their care.
Speaker 3 (17:29):
I think that is so important, and sadly, so many
of you adults fall through the cracks because if you
don't have a job that provides health insurance, a lot
of you don't continue to see the cardiologists yep, or
you end up going to a regular cardiologist because there
aren't a net adults specialized cardiologists throughout the world.
Speaker 2 (17:52):
Yep.
Speaker 3 (17:54):
So it is important for you to keep yourselves visible,
and this is one way that you can be visible.
They mis isn't it.
Speaker 2 (18:01):
Yep.
Speaker 1 (18:01):
Yes, it's a big way for us, I think, and
we want to work with the doctors on things. It's
just sometimes it's when they focus so much on how
to improve the original surgeries, then we got to get
lost in the shuffle. Yeah, we kind of want to
just stay in front of them.
Speaker 3 (18:17):
Right. Do you know about Tim Nelson's co op?
Speaker 2 (18:22):
Have you checked into it a little bit? Yeah?
Speaker 3 (18:25):
Tim Nelson. For those of you who haven't listened to
every episode of Part Chart with Emma, Tim Nelson has
been on my program multiple times talking about hard Works,
which is a nonprofit he and his brother started, and
it's to help people like Tyler, like my daughter, like
any of the other single venture col Fontane patients out there.
(18:45):
And they created a co op where they're allowing patients
like Tyler and Hope to register their EMRs. There are
electronic medical records with them, so as they are creating
and they're in need of patience for those studies. Because
Tower just said, you guys are few and far between,
(19:07):
they can directly reach out to the patients and say, hey,
we just started a study that's looking at the Fontiane
lever and you qualify. Would you be interested in this study?
Guess yourself, a whole new way of doing research. What
do you think about that.
Speaker 1 (19:23):
I'm always up for being part of a trial. I've
been part of trials my entire life. I've joined a
few of those types of groups and I'm planning on
joining Heartworks as well. I think it's really important to
figure out what's working overall. Are You're not going to
get one hundred percent accuracy with these things, just because
people are so individual and so different depending on how
(19:45):
and where they grew up.
Speaker 2 (19:46):
But I think getting big pictures.
Speaker 1 (19:48):
Of what works generally is important for not only people
with heart defects, but people generally.
Speaker 3 (19:55):
What do you mean people generally?
Speaker 1 (19:58):
I mean there's a lot of things that can happen
to people health wise as they get older. Having the
knowledge base of different thoughts of illness as it can
help a lot of people in the future.
Speaker 3 (20:10):
Right, it may be to be yeah, it might be
overgeneralized to other chronically ill populations, or yeah, that makes
a lot of sense.
Speaker 2 (20:20):
Absolutely yeah.
Speaker 6 (20:26):
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,
(20:46):
please visit our website at www Congenitalheartdefects dot com for
information about HD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
are listening to Heart to Heart with Amma. If you
(21:07):
have a question or comment that you would like to
address on our show, please send an email to Anna
Jaworski 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 3 (21:26):
Tyler, You're working full time, going to school, serving on
this planning committee. How do you balance all of these
different activities.
Speaker 1 (21:36):
I'm not entirely sure how I do and I do.
I'm actually working part time right now. I'm working twenty
four hours a week. School is part time as well,
but it's a lot of work to get a master's degree. Yeah,
so it's not easy being part time and I can't
focus all my time on it. But I think part
(21:56):
of it is just putting your nose to the grindstone
and saying, do you want to get this done? Then
you have to actually work on it, which has been
difficult for me throughout my life as a procrastinator. I've
always tended to put things on the back burner until
it has to be taken care of.
Speaker 2 (22:13):
So that's been part of.
Speaker 1 (22:15):
Getting the Master's tree, as we figure out how to
prioritize what's important to me, how to put that first
opposed to the fun things that I wanted to do.
Speaker 3 (22:27):
All right, it's always more fun to go to a baseball.
Speaker 1 (22:29):
Game, yeah, or watch TV show or going out with friends. Sure,
and sometimes it's like, you have to get this paper
done by the weekend or you're not going to pass
the class.
Speaker 3 (22:41):
Right right, So that kind of forces you into a position.
I'll better study, better, work on my paper better, Yeah,
go to class.
Speaker 1 (22:50):
And knowing that I can do it is very helpful.
I've always known that I was intelligent, but I didn't
always show it. As my parents will tell you, I
didn't know I show it.
Speaker 3 (23:03):
Never does any human beings. So, yeah, you're just telling
me you're human, diler, which yes, I know you're human.
I love that.
Speaker 2 (23:12):
That's good.
Speaker 3 (23:12):
That's a good thing. One thing that's been interesting to
me is as time has progressed, we're seeing more and
more adults with PhD who are being diagnosed with ADHD PTSD.
A number of other conditions that are possibly a consequence
of their heart defect or the surgeries that they've had,
(23:35):
or they're just now recognizing neurologically that some of your
brains took a hit when you had these multiple open
heart surgeries, and they're finally being told you have an
executive function problem and that's because of the part of
your brain it was affected when you had open heart surgery.
For some people, it's been really eye opening, and it's
(23:58):
given them almost a synth of really is that it's
not like I'm a bad person, or I'm lazy or
I'm stupid. There's this reason behind it that makes a
whole lot of sense. Has anything like that come up
for you, I don't think so.
Speaker 1 (24:12):
I am in therapy for multiple reasons, not just the
heart defect. I can thank my brothers for that. I
don't think I've been diagnosed with anything like that. I
don't think people suspect it because I've been told by
people that just by looking at me, they wouldn't know
that I had a heart defect, which is a good
thing generally. Even my cardiologist told me last time I
(24:36):
saw him that if he saw me on the street,
you wouldn't know I.
Speaker 2 (24:39):
Had a heart defect.
Speaker 3 (24:40):
Isn't that lovely?
Speaker 2 (24:41):
Which is always good to hear. Yeah, I means you're
doing pretty well.
Speaker 3 (24:46):
Yeah.
Speaker 1 (24:47):
See, I know there are people that do have issues
with that and do need help, and they should get
the help they need. Yeah, I'm all forgetting therapy or
medications or whatever else people need to help them survive
every day.
Speaker 2 (25:03):
But I've never had that issue.
Speaker 1 (25:05):
I think my older brother was the same way as
I was, being a procrastinator, and we valued different things
other than education as we went through school, Even though
we both have college degrees, it was not as easy
for us as it was for my sister and younger brother.
Speaker 3 (25:24):
Interesting.
Speaker 2 (25:25):
I don't know if that's just the way we're made
or what.
Speaker 3 (25:28):
But and he's not a twin or anything. You guys
have a couple of years difference.
Speaker 2 (25:34):
About three years between us.
Speaker 3 (25:35):
Yeah, let's look back in your history just a wee bit,
because you did write for my Books at Heart as
a Heart Warrior about your vocal cord Proustis. I'm wondering
if that affected you, because we know that beach and
language development is critical when it comes to understanding the academics. Later,
(26:03):
it was really hard for people to hear you, or
for you to make yourself understood for a long time.
How do you feel that ashected you academically as.
Speaker 1 (26:13):
A child, I think it was more of a social
barrier than it was an academic one. As far as
the academics plant that could do all the work. If
they gave me a test, I would pass the test,
usually with flying colors. But I think socially it was more
of a barrier that way, because I couldn't speak up
and I couldn't get people's attention. If if I wanted
(26:35):
to talk in class, I had to make sure everybody
was as quite as they could be so the teacher
could hear me. So I think I became more introverted
than I otherwise would have. Sure makes sense because I
figured if I can't talk, I better at least listen
to what the people are saying. So I became a
really good listener, which is a good school to have.
(26:56):
But as far as sharing my story and my thoughts,
I think the fourteenish years that I spent with a
paralyzedble record had a much bigger effect on my social
growth than it did my academic growth.
Speaker 3 (27:13):
You telled a sweet story in the book about your
relationship with your grandfather. Can you talk a little bit
about that.
Speaker 1 (27:24):
Yeah, my grandfather was born in nineteen eighteen, so he
was I think in his seventies when I was born
in nineteen ninety three, and he had been in the
war and he couldn't hear as well as he used
to at the time I came around. She was always
yelling and he seemed like a grouch, but he was
a big teddy bear. My mom was afraid of him
(27:46):
for the first few years that my dad and her
were married, so you'd have.
Speaker 2 (27:52):
To ask her more about that story.
Speaker 1 (27:53):
But yeah, he had a hard time hearing me specifically,
and my grandfather had just had a stroke, like the
week before my surgery after the vocal record and on
the way home from the hospital, my parents decided to
call my uncle because he was at the hospital with
my grandfather and he heard me speak his language. Girls
(28:17):
had taken it dive after the stroke, so he could
speak back. But my uncle told me that he was
in tears hearing me speak with a full voice for once,
and he passed away about a week later after that.
Speaker 3 (28:31):
So I was so glad he got a chance to
hear your voice.
Speaker 2 (28:36):
Yeah, so am I.
Speaker 3 (28:38):
That's amazing.
Speaker 1 (28:40):
I was always one of his favorites, and one of
his wishes was me to have a full voice, and
he finally got that right before he passed.
Speaker 3 (28:49):
So, oh my gosh, that's so sweet and it makes
perfect sense. I'm a grand nearer now myself, and of
course you want only the best for your grandchildren. And
I'm sure he noticed how difficult it was for you.
Do you think it affected your relationship with your siblings
as well?
Speaker 1 (29:07):
My older brother talked enough for both of us. I
don't think it affected it too much. My older brother
was always the more talkative, outgoing one, and my older
brother is also very extroverted, so between the two of them,
it's hard to get a word in edgeways.
Speaker 3 (29:23):
Are you able to do so better now?
Speaker 1 (29:25):
I can do that now a lot better. Sometimes they
just let them talk and talk.
Speaker 3 (29:29):
They needed a brother who was a good listen there.
Speaker 2 (29:31):
Yeah, that's too funny.
Speaker 3 (29:34):
So you've moved out of your parental home. How are
you doing with the transition of living away from your family.
Speaker 2 (29:42):
I'm doing really well.
Speaker 1 (29:43):
Not that I'm glad to be away from my parents,
but sometimes it's nice to have some space between them
and me.
Speaker 2 (29:51):
It's about six hours drive between us.
Speaker 3 (29:54):
That's a big drive.
Speaker 1 (29:57):
My parents do it pretty often, especially over the past
few months with all the health issues I've had recently
with the transplant evaluation that I went through.
Speaker 2 (30:08):
I'm almost down.
Speaker 1 (30:08):
Here at least once a month, if not more than
that since March. They're always willing to do it, and
they're glad I'm not in Los Angeles or someplace like
that right flight, so the close enough that if anything happens,
they can be here within six hours. But I think
just being able to be on my own and figuring
out what I want out of life has been really
(30:30):
good for me. Yeah, and meeting people and finding different
places for me to use my talent and skills outside
of single ventrical patient day and the Planning Committee and
things like that, because that's not all.
Speaker 2 (30:42):
Of who I am. That's part of who I am,
it's not all of it.
Speaker 1 (30:46):
So I'm glad to be able to be in Pittsburgh
and use this town as a way to get more
involved in things I enjoy.
Speaker 3 (30:57):
Yeah. It's almost like a launching pad for you, isn't it. Yeah.
Speaker 1 (31:00):
Yeah, I think my parents did a really good job
raising me and all my siblings that they can trust
us to be on our own without needing a lot
of the help. If I asked, they would help. But
it's nice to be on my own and worry about
my stuff as opposed to trying to deal with the
rest of my family all the time.
Speaker 3 (31:21):
It gives you a chance to be on an adult
adult level with your parents instead of still perpetuating the
parent child relationship even though you're thirty. When you live
in your parents' home, it makes him more of a
challenge to treat you as a peer when you're on
your own.
Speaker 1 (31:41):
Yeah, over the past few months, I think my parents
have seen me more than they saw my little brother,
who lives in the same town.
Speaker 2 (31:49):
As they do. He has a very full.
Speaker 1 (31:50):
Schedule as a nurse in the er, and he's very extroverted,
so he has to be with friends all the time.
Speaker 3 (31:57):
Sure, he still lives at home, but he's never don't
live at home.
Speaker 2 (32:00):
He's married in the same town.
Speaker 1 (32:04):
I think it's about a ten or fifteen minute drive
between my parents and his house, but he didn't see
him very often.
Speaker 3 (32:13):
Yeah, you mentioned something in passing, and I know my
listener's ears perked up when you said it, So I
have to ask. You talked about having a heart chance
plant evaluation. Would you mind sharing a little bit more
about that with us and where you stand today.
Speaker 2 (32:30):
Yeah.
Speaker 1 (32:30):
I saw my cardiologists in January, and over the past
year or two years, they've been trying a few different
medications to try to keep everything blowing as well as
supposed to.
Speaker 2 (32:41):
They got to a point.
Speaker 1 (32:42):
Where they decided that I should be evaluated for a transplant.
I had the evaluation of the first big of May
this year, and then right around the beginning of June,
they told me that I was not going to be
on the list because my immune system is too strong,
which is something that's normally a good thing.
Speaker 3 (33:02):
But yeah, I maybe smile. I'm like, he's doing too
well to be on de layers. That's what you want
to hear.
Speaker 1 (33:09):
Well, they said, if it wasn't for the antibodies and
then your system, they would have put me in the list.
Speaker 2 (33:14):
But then I saw my cardiologists.
Speaker 1 (33:15):
Okay, I saw my cardiologists last week and he said
that right now I'm good enough that I can wait
on getting it's like an opinion until after I graduate
in December, and we'll re evaluate then. So I'm doing
really well right now, still doing all my regular activities.
Speaker 2 (33:34):
Which is good.
Speaker 1 (33:36):
Still playing pickleball and going to work and doing school
and hang out with friends here. So as long as
I'm doing that, I think I'm going to be okay
without a transplant. But at some point I think most
of us know we'll all need one.
Speaker 3 (33:52):
I remember reading in the literature years and years ago,
is Trey's plant stage four of the normalod fonteane procedure.
Speaker 2 (34:02):
Yeah.
Speaker 3 (34:03):
I saw lots of different studies. Yes it is. No,
it isn't. And it left us all baffled. It's like, well,
is it isn't it?
Speaker 2 (34:10):
Yeah?
Speaker 3 (34:11):
And the answer is for some people it is, for
some people it's not. You just don't know which camp
you fall into. That you've lived long enough and you're evaluated.
So this condition where you have the antibodies in your
blood is that rare? What exactly does that mean?
Speaker 1 (34:29):
They told me that people who have lots of surgeries
and lots of mechanical parts and to have higher antibody counts,
And when you have a transplant, you want to match
the antibodies as best you can to the donor so
that you're not dealing with that on top of the
other ammunisy press and stuff. So basically what they said
(34:49):
was my donorpool would be really small. Yeah, so it
really wasn't worth putting me on the list.
Speaker 3 (34:55):
Because your anti bodies would attack the other part unless
it was a perfect match.
Speaker 1 (35:01):
Yeah, and even with that, it would still attack it anyway,
which is why you be put on the immunis presence
to right write that, but either immunosipresence wouldn't be strong enough.
Between my dart will being really small and emasu presence,
it wasn't worth taking a risk at this point.
Speaker 3 (35:23):
Okay, Well, that's good to hear that you're doing so well,
and it's also good for me as a mom to
hear that you're getting involved with heart Works and some
of these other organizations that are doing a similar thing
to what doctor Nelson is doing and want to actually
be in touch with the patients so when they do
create some kind of study, they maximize the number of
(35:47):
patients who are involved in that study.
Speaker 2 (35:50):
Yep, I agree.
Speaker 3 (35:52):
What advice do you have for other single ventricle survivors
who want to be involved in helping you with promoting
education as far as SV one, or just getting awareness
about heart to checks out to the general community.
Speaker 1 (36:07):
I think the biggest thing would be attending SV one
or the Patient Day this fall. I know not everybody
can make it. It can be expensive to get to.
A registration is free for patients, but just have to
factor in the cost of travel and hotel. So I
know ideally being there is the best way to do it,
(36:29):
because then you get to talk with all of us
that are already involved. And then I would find groups
on Facebook. I would go to the local care center
see if there's not doing anything as far as reaching out.
I know there's walks and races as well across the
country with the Congenital Heart Foundation and a few other
groups like that. If I were starting over, I would
(36:52):
say get involved in those groups, then the.
Speaker 2 (36:57):
SV one group as well.
Speaker 1 (37:00):
Try to put yourself in places that you think you
would be able to help in, whether it's speaking at
events or being somebody who can give hope like I.
Speaker 2 (37:08):
Do to other families.
Speaker 1 (37:10):
Right, there's room for all kinds of people, whether it's
outgoing or introverted, or people like speaking people who don't
like speaking. We need all types of people to help.
Speaker 3 (37:21):
Are you somebody who will be speaking at the event
this year.
Speaker 1 (37:24):
I'm not sure if I'll be speaking, but I've spoken
at past events. I've spoken at a handful of other non
single ventrical Patient Day events as well, so I'm used
to speaking, and I enjoy speaking, even though I'm pretty
introverted myself and I don't tend to be one that
likes being in the spotlight, but for things that are
important like this, I don't mind doing it.
Speaker 3 (37:45):
I love that. It's interesting because you said earlier something
about how you're not just on the planning committee for
SV one. You're not just somebody who works thereor somebody
who's going to school. There's so much more to you.
And that is something that help said to me even
as a young child. She didn't want to be the
poster child for PhD or for HLHES. I totally understand
(38:07):
that and respect that, but I think maybe that's an
and stoken fear that a lot of patients have, is
that if they attend some of these events, everybody's going
to say, Oh, that's the single ventricle person, or that's
the natual aHUS person. Can you talk to that? Is
that your experience when you go to these events.
Speaker 2 (38:28):
At the events.
Speaker 1 (38:29):
Since we all know that we each have a similar defect,
it's not really spoken about all that much. We tend
to talk more about our lives and what's going on
and the football games that are happening, and whatever else
is going on outside of our hearts. It gets brought
up occasionally with people because sometimes they have issues that
(38:50):
wan't to talk about, but for the most part, we're
regular people doing regular things, talking about the normal things
that people talk about at events like that. We're just friends.
A lot of us are friends with each other, so
that helps. Anytime you go and see him in person.
There's new things to talk about. People are getting married
or having kids, or have family members that are doing
(39:14):
those things, are getting new jobs, things like that that
are exciting to talk about.
Speaker 3 (39:19):
Normal everyday things that everybody talks in with their friends.
That's what I love about it. So if you're a
patient and you're out there and you're like, I don't know,
I why she get a gag. I don't want to
be labeled. It says to me like you have to
worry about that. How many already knows. If you're going there,
you're either the parent of somebody, a professional who works
with people who have heart conditions, or you're one of
(39:41):
the survivors, you don't even have to go through that.
Do you have a name tag that says heart mom,
ah HF SV or anything like that.
Speaker 1 (39:50):
Name tags the ones you get from the event will
have your name and your care center on it.
Speaker 3 (39:56):
I love your center.
Speaker 1 (39:58):
And then they have optional things you can place on
your badge that has like a parent or cardiologist or
patient or whatever else. Number of things they have as options,
so you don't have to place your label on if
you don't want to, but they're optional.
Speaker 3 (40:17):
But if you do, then you know who you're talking
to and you don't even around to go through that conversation.
Speaker 2 (40:22):
Right yep.
Speaker 1 (40:22):
And someone will was a speaker if they're speaking at
the event or things like that. You'd be anonymous if
you want. Otherwise you can announce the world what you
have or what you're doing.
Speaker 3 (40:33):
Uh huh, I love that. Before we go, can you
tell us how others can get involved with Single Vitrical
Patient Day.
Speaker 1 (40:40):
Yeah, I think I'm not sure when registration will open up.
I would keep an eye out for that on Facebook,
and I think the website will have it as well.
Speaker 3 (40:49):
A SV one website, right, and I'll have the link
to that in the show notes friends, So in a
description of the show, I'll be including that link, yep.
Speaker 1 (40:57):
And then if you're friends with Meg Detier or Amanda
Harper or Alisha Wilmoth, many of those people that are
on the Planet Committee, they'll all be posting about it
on Facebook and.
Speaker 3 (41:08):
Instagram especially, are really good about putting information on LinkedIn.
I'm always seeing Megan Megan posting about that, so that's
really helpful too, great, Or if you're friends with Tyler Shydock, Yeah, I.
Speaker 2 (41:22):
Don't post a whole lot.
Speaker 1 (41:23):
In general, you can be my friend, but I don't
post a whole lot.
Speaker 3 (41:27):
Okay, I have to break that rule a little bit
to help out when it gets closer to the event. Yeah, well,
thank you so much for coming on a program today, Tyler.
The time has just flown. It's been so much fun
catching up with you and learning more about sc One
and how you got involved. And I'm amazed at how
(41:50):
your voice sounds. It's absolutely fabulous.
Speaker 1 (41:53):
Yeah, it's been great being here, and thank you for
the compliment. And I'm glad to share some more stories
and I probably think you can get involved, and my
own life has gone so far.
Speaker 3 (42:08):
As I reflect on today's episode, I can't help but
think back to when my daughter Hope was first diagnosed
with hypoplastic left heart syndrome over thirty years ago. That
diagnosis completely changed my life. Like Christy Pania, I was
determined to do everything I could to save my child.
For Hope, that meant trying to understand the three surgeries
(42:29):
she would need, surgeries that were still considered experimental in
the nineteen nineties.
Speaker 4 (42:34):
I feel so blessed that I didn't have to fight
the government for access to treatment the way Christie is
having to today. But I understand her struggle deeply, and
I learned when Hope's diagnosis shifted to single ventricle after
her third open heart surgery, Because sometimes diagnoses evolve and
we parents have to pivot, adapt and keep fighting.
Speaker 3 (42:56):
That fight never ends. Tyler's story is a beautiful reminder
of what can happen when we do keep fighting. Our
children grow up, pursue their passions, give back to their community,
and inspire the next generation. I was also reminded of
this just yesterday when I recorded a live episode Apart
to Heart Danna exclusively for patrons of volunteers.
Speaker 4 (43:19):
Every month we gathered together for an unscripted conversation around
a different theme. This month, we talked about education and
careers with members at the PhD community. We heard from
an adult with nomenclature HLHS Anny Alcich about the accommodation
she needed to succeed in school, from a patron in
(43:40):
the UK with drug induce on QT syndrome Ericson Beattie,
who shared how open University opened doors at teachers once
thought were closed, And from a volunteer.
Speaker 3 (43:51):
With cerebral palsy, Spencer Keaton, who showed how five oh
four plans made it possible for him to earn a
bachelor's degree. We even heard from dad of a single
ventricle adult who found his own.
Speaker 4 (44:02):
Creative ways to support his child's education. Next month, our
focus will be on global PhD perspectives and I can't
wait to hear the stories and insights from our worldwide community.
These monthly conversations are some of my favorite moments, and
I hope more of you will consider joining us as
patrons are volunteers so you can be part of them too.
(44:25):
And speaking of adults with HLHS, in the next episode
of Heart to Heart with Anna, I'll be talking with
Steve Hutchison. Steve shares what it was like growing up
with hypoplastic left art syndrome and how he balances life
today as a husband, father, and breadwinner, all while managing
a chronic condition. His story is a powerful reminder that
(44:46):
while HLHS begins as a childhood diagnosis, it's something people carry.
Speaker 3 (44:51):
Throughout their entire lives. My friends, whether you are a parent, patient, doctor, teacher,
or advocate, this community means you. We need your stories,
your voices, and your commitment to keep moving forward until
next time. Remember, my friends, you are not alone.
Speaker 6 (45:30):
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've been told by people that are just by looking
at me, they wouldn't know that I had a heart defect,
which is a good thing generally. Even my cardiologist told
me last time I saw him that if you saw
me on the street, you wouldn't know.
Speaker 2 (00:12):
I had a heart defect.
Speaker 3 (00:20):
Hello, my friends, and welcome to Heart to Heart with Anna.
I am Anna to Warsky, a heart mom to my
amazing daughter who is post spontane and just turned thirty
one years of age this month, August twenty twenty five.
I'm so glad you're joining me today. Before we dive
into our conversation with today's.
Speaker 4 (00:39):
Guest, Tyler Shadaf, a single venture cool survivor, academic advisor,
and passionate advocate for the kijab a heart defect community,
I'd like to take a few minutes to share the
story of another heart mom as some exciting news for
our community today. I want to share the story of
(01:00):
my friend Christi Pania. Christy is a heart monk and
a fierce.
Speaker 3 (01:04):
Rare disease advocate. Her son has Barth syndrome, a mitochondrial
disease that is always fatal without treatment. Christie has seen
firsthand how a drug called de lepromide has transformed her
son's life. Families have called it a miracle. The science
is strong, the safety is clear, and children are alive
(01:25):
today because of it. And yet the United States Food
and Drug Administration, often called the FDA, recently denied a
reconsideration request for this drug's approval. To make matters worse,
the company that produces it is collapsing. Imagine what it
feels like to watch a treatment that is saving your
(01:45):
child's life slip through your fingers, not because it doesn't work,
but because of bureaucratic red tape. Christie is in giving up.
She and other families are preparing to go to Washington,
d C. In peaceful protest. As Christy said in one interview,
it's not a matter of if this disease is going
to kill my son, it's a matter of when. We're
(02:08):
just not going to give up right now, These families
are urging oversight from the United States Congress, the Secretary
of Health and Human Services, and the Commissioner of the FDA,
and they are asking all of us to help too
by amplifying their voices, sharing their story, tagging lawmakers, and
(02:28):
keeping the pressure on I wasn't able to record a
full episode with Christy this time, but I reached out
to other podcasters. I'm thrilled to say that the team
at Share the Tea Tuesdays immediately agreed to feature Christie
and her story. I'm so grateful her message will be
heard on a larger stage. If you have the ability
(02:49):
to help Christie and others living with Barth syndrome, I
encourage you to raise your voice, share Christie's story, speak
up about the importance of access to life saving treements,
and let lawmakers know these families cannot be ignored. If
you'd like to connect directly with Christy, reach out to
me and I'll be happy to put you in touch
(03:09):
with her. And if you'd like to learn more about
Barth's syndrome itself, I'll include a link in the show
notes to the earlier episode where Christy taught us about
her son's condition, Barth syndrome, which includes a congenital heart defect.
Now on to the news. In other news, Boston Children's
(03:36):
Hospital is hosting a free event for single ventricle families
a September twentieth, twenty twenty five. This special day will
include educational seminars, updates on advancements of care, opportunities to
connect with other families, and even free access to the
New England Aquarium. Lunch will be provided and this Source
(03:57):
team will be in attendance.
Speaker 4 (03:59):
If you'd like to to learn more a register for tickets.
You'll find the link in the show notes. Next up,
my amazing guest, Tyler Shydock. This content is not intended
to be a substitute for a professional medical advice, diagnosis,
or treatment. The opinions expressed in a podcast are not
(04:21):
those of Hearts 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 3 (04:31):
Today's guest is Tyler Shydock. Tyler was born with hyplopeistig
lectart syndrome. He holds a bachelor degree in political science.
It currently works as an academic advisor at the Community
College of Allegaty County. Tyler is also pursuing a master's
degree in education at the University of Pittsburgh. In addition
to his academic and professional pursuits, he is involved in
(04:55):
a single venture call Patient a Planning Committee and as
part of the mpc QA I'd See FON Committee. Wayne
Tyler is not working or studying. He enjoys watching and
playing sports, particularly attendee Pittsburgh Pirates games and participating in
local slow pitch football leagues. He also enjoys unwinding by
(05:16):
watching movies and television shows. Tayler contributed an essay to
the Heart of a Heart Warrior about his experience with
vocal court paralysis after surgery, and he is passionate about
raising awareness and supporting the single ventrical community. Welcome too
Hard to Heart with Theanna Tyler.
Speaker 2 (05:35):
Thank you for having Mienna.
Speaker 3 (05:37):
It's absolutely my pleasure to have you here as someone
who was born with a single vtrical heart and who
now serves on the planning committee. What unique perspectives do
you bring to organizing Single Vetrical Patient Day and how
do you ensure that the voices of patients and families
are truly represented in that event's programming? And isn't it
(05:59):
ON one now?
Speaker 1 (06:00):
We changed the name to SV one Single Ventrical One,
combining the two because the NBCQIC was pre Fontan and
FON was Postfontan, so they kind of combined into one
starting life.
Speaker 2 (06:14):
First of twenty twenty five, they officially.
Speaker 1 (06:18):
Joined together as far as the patient day and the
whole event go. I'm on the planet committee for both
patient day and the whole event, So I think my
role as a patient in the bigger event Bigger Day
is going to make sure patients get thought of, because
that wasn't always the case with these congenital hard conferences.
(06:40):
It was often about doctors and nurses and how we
can better treat the little kids as they're going through
the surgeries, and not so much about how the adult
patients are doing. So I think my role is making
sure the other planners are thinking of how the adults
can be served as well. And then for the single
(07:01):
ventric patient day itself, there's a group of I think
five of us that are on the planning committee, and
so we try to find different topics each year a
matter of interest to single legrical patients that are fourteen
and up. It's kind of our age group. So this
year we've got a few different ideas. We're still working
on getting everything set, but we've got a handful of
(07:24):
ideas that are We've done some of them the past,
but they're ones that get brought up every year as
the things they want to talk about and learn more about.
So we bring in doctors, we bring in other patients
that have gone through similar things. We try to serve
our community as best we can with the sessions we have.
Speaker 3 (07:42):
I wanted to go and I wasn't able to and
I'm binmed the bit. I want to go this year.
So do you already know when it will be occurring
and what city? Because it has moved around in the past,
that's the main.
Speaker 2 (07:56):
Yeah, we usually pick a difference city each year.
Speaker 3 (07:58):
That's not up to me the choose where we go,
but Lewis last year.
Speaker 2 (08:04):
Was in Saint Louis.
Speaker 1 (08:04):
Last year, it's been in Chicago a couple of times.
It's been in ann Arbory a couple of times. But
this year it's gonna be Indianapolis, Indiana, And I believe
the dates are October ten and eleven, which is Friday Saturday, like.
Speaker 2 (08:18):
The second week in October.
Speaker 5 (08:21):
Who generally goes to this it's a lot of medical
professionals as the biggest group, cardiologists, nurses, other people in
the field, and then there's also a lot of parents
and patients.
Speaker 1 (08:33):
I think last year we had thirty to forty patients
and there are some family members, houses and significant others
have joined in the past. Last year we had a
session on parenting and how single ventrical patients deal with
the different ways to have children. A lot of the
spouses were there for that as well.
Speaker 3 (08:54):
Yeah, have you considered having a session on parenting an
adult single patient?
Speaker 2 (09:01):
That was something we tried to get in the schedule
for this year.
Speaker 1 (09:04):
I'm not sure it's going to work for this year,
but hopefully next year we'll have a session on how
to parent a single ventric child all the way up
to adulthood.
Speaker 3 (09:13):
That's all what I know. I mean just focusing on
being a parent of an adult, single ventricle child, because
it's very different raising a child to adulthood. There's so
many different things that you have to go through, and
a talk like that is probably going to focus more
on how to transition them to being responsible for their
(09:35):
own care and blah blah blah. I'm talking about once
you've already done all of that, and now your kid's
thirty or now your kids fifty. Trust me, as a
parent of a thirty year old, it's a very different
experience and I think there haven't been a whole lot
of us parents who have made it that far. We're
a fairly small cohort. But I think there are certain
(09:59):
things things that we need to talk about or we
need to let the medical community know how we still
want to be involved. And I think it's really addressed
that much because legally we're not the patient yep.
Speaker 2 (10:16):
Once they turned eighteen or nineteen, famist seventeen.
Speaker 3 (10:20):
Yeah, even when Hope was in the hospital last time,
when she was seventeen, they wouldn't even talk to us
about certain things unless they got her permission and we
were all in the room at the same time, even
though she gave them permission verbally beforehand, they wouldn't talk
to us.
Speaker 2 (10:35):
Yeah. I think part of the issue with that is
the sample size. It's so small.
Speaker 1 (10:39):
There's not a lot of people studying it or in
that position as opposed to the younger groups where there's
a lot more patients going through the surgeries in the
years after the surgeries, as opposed to us that are
thirty plus.
Speaker 3 (10:56):
Yes, you need to tell them. Anna Jaworski told me
she would like to come and she would like a
session like this.
Speaker 2 (11:03):
Yeah, I'll bring that to the group.
Speaker 3 (11:06):
Okay, we're out to the Greeks. See what they say.
I know I'm not the only one because that you know,
I'm friends with your mom, and I'm friends with a
lot of other people who have children who have survived
into their thirties and beyond, which is really exciting for us.
We were given such abysmal odds that you kids would
make it that I think it's left us all a
(11:28):
little dumbfounded. How awesome you guys have been doing.
Speaker 1 (11:32):
Yeah, yeah, I think we've been guinea pigs for a
long time and we're still guinea pigs some extent.
Speaker 2 (11:39):
Nobody knows at what stage to do what.
Speaker 1 (11:42):
Yet, when you get to thirty and such an individual
case by case basis who that it makes it difficult
to have any hard and fast rules.
Speaker 2 (11:52):
Want to get to this age right.
Speaker 3 (11:55):
So the npc QIC and fontan On Outcomes Network, I'm
so glad us that to ask me one those book
that you's here to say.
Speaker 2 (12:03):
Yeah, the SV.
Speaker 3 (12:04):
One were really known as the MPCQIC and Fontane Outcomes
Network emphasize sharing knowledge and build a community among care
centers and families. Can you describe a specific initiative or
a session it's planned for the final Vtrical Patient Day
that you believe will have a significant impact on attendees
(12:26):
and why we're.
Speaker 1 (12:28):
Still in the planning stages and we're still trying to
figure out which sessions we're going to do this year.
But I think overall, getting groups of patients together to
meet each other in person is always going to be beneficial.
Growing up, a lot of us didn't know other people
that were in the same boat as us. We saw
each other in the hospital every now and then, but
(12:51):
there really was no connection between patients when we were younger.
I know, I was in my mid twenties when I
first met somebody else who had HLI chess. That was
my age, which is a long time to go before
you meet somebody who has So you.
Speaker 3 (13:06):
Never went to any of the camps or anything like that. Nope,
I did not, and my daughter didn't either. She wanted
to go to regular camps. She did not want to
go to any of the hard camps.
Speaker 2 (13:13):
I always thought it was too healthy for things like that.
Speaker 3 (13:16):
That's what she said. That's what she's said.
Speaker 1 (13:19):
ESPN used to do the Make a Wish episodes I'm
a Sports Center each summer and my mom's like, you
should do one of those sometime. I basically told her
I was too healthy to do that, and now I
wish I had done it. But yeah, I think just
getting to meet each other has been such a blessing
for a lot of us. And each year we get
(13:40):
new people that come and they get walking to the
group just like they were there since the beginning. Everybody
I've talked to has said that's the biggest part of
going to these events, going to see each other at
these things from across the country. You get patients from Washington,
d C. And patients from Oregon and a and all
(14:01):
these other places across the country in Texas. Yeah, that
you wouldn't otherwise know maybe on Facebook or some place
like that, but you don't.
Speaker 3 (14:10):
I interviewed a young lady who came all the way
from Australia to attend the sv one this share, so
that was pretty cool. Yeah, so it's not even just
a national conference. You're getting people from all of the world, which.
Speaker 1 (14:27):
Zoom session as well, so I can enjoin on Zoom
and we've had people from all over the world attend.
Speaker 3 (14:34):
I love that. Have you ever attended the ACHA conferences?
Speaker 2 (14:38):
Have not attended any of those conferences.
Speaker 3 (14:42):
The adult because she had a Heart Association conference. I'm
surprised you haven't attended any of those.
Speaker 1 (14:48):
I've been very busy with school and work and everything else,
so sure time off.
Speaker 3 (14:55):
Yeah, I get that. Ever since COVID, things have been
messed up. Says haven't been put out the same way
that they were before, and yeah, I get it. For me,
going to the ACHA conferences, that was the highlight for
me was getting to meet people from all over the world.
(15:15):
A lot of them were people that we had never
met face to face, and this was our first time
to do that. That was exciting, and I'm so glad
that the SV one and a single Ventrical Patient Day
give people another opportunity to come together and get to
meet each other.
Speaker 2 (15:32):
Yeah.
Speaker 1 (15:32):
I met a lot of kids that were younger than
me growing up, just because my parents were well connected
with people. So every time there was somebody they knew
who had a trialed with card defect, they would always
call us and we'd always go meet with the family.
I thought it was nice to do good way to
reach out and give them some hope. But yeah, I
(15:54):
never really met anybody my age until I was in
my mid twenties.
Speaker 3 (15:57):
It's amazing. It's inspiring to me that your parents wanted
to present you as a picture of hope, just like
I did with my child. But yeah, it is lonesome
when you're always the oldest one. Yeah, that's what makes
it really powerful when you go to something like the
Single Ventrical Patient Day and all of a sudden you
(16:17):
meet somebody who's two years older than you. And you
wouldn't think somebody two years older than you is a
big deal, but it is a big deal when you're
talking about hypoplastic left art center.
Speaker 2 (16:26):
Yeah, yes, it is for sure.
Speaker 3 (16:29):
With so much still unknown about managing single ventrical and
fintiance circulation, how do you see events like Single Ventrical
Patient Day contributing to ongoing improvements and care and outcomes
for patients like yourself.
Speaker 1 (16:43):
I think the biggest thing is just making sure we're
on the radar of the cardiologists and the doctors and researchers.
They spend a lot of time focusing how to improve
the first three surgeries and improve the quality of life
within the first five years that they kind of sometimes
for that, there's adults that's very unknown, what's happening with
(17:04):
us at this point with all the liver stuff going on,
and I have some patients fac kidney issues.
Speaker 3 (17:11):
Because right now there's a huge focus on the liver.
But it's not just the liver that's affected. The kidney
is also affected.
Speaker 1 (17:17):
Yeah, yep, I think everything is affected, but I think
the liver is the biggest thing for me, at least.
I think the biggest thing just making sure we stay
in their eyes and their research and their care.
Speaker 3 (17:29):
I think that is so important, and sadly, so many
of you adults fall through the cracks because if you
don't have a job that provides health insurance, a lot
of you don't continue to see the cardiologists yep, or
you end up going to a regular cardiologist because there
aren't a net adults specialized cardiologists throughout the world.
Speaker 2 (17:52):
Yep.
Speaker 3 (17:54):
So it is important for you to keep yourselves visible,
and this is one way that you can be visible.
They mis isn't it.
Speaker 2 (18:01):
Yep.
Speaker 1 (18:01):
Yes, it's a big way for us, I think, and
we want to work with the doctors on things. It's
just sometimes it's when they focus so much on how
to improve the original surgeries, then we got to get
lost in the shuffle. Yeah, we kind of want to
just stay in front of them.
Speaker 3 (18:17):
Right. Do you know about Tim Nelson's co op?
Speaker 2 (18:22):
Have you checked into it a little bit? Yeah?
Speaker 3 (18:25):
Tim Nelson. For those of you who haven't listened to
every episode of Part Chart with Emma, Tim Nelson has
been on my program multiple times talking about hard Works,
which is a nonprofit he and his brother started, and
it's to help people like Tyler, like my daughter, like
any of the other single venture col Fontane patients out there.
(18:45):
And they created a co op where they're allowing patients
like Tyler and Hope to register their EMRs. There are
electronic medical records with them, so as they are creating
and they're in need of patience for those studies. Because
Tower just said, you guys are few and far between,
(19:07):
they can directly reach out to the patients and say, hey,
we just started a study that's looking at the Fontiane
lever and you qualify. Would you be interested in this study?
Guess yourself, a whole new way of doing research. What
do you think about that.
Speaker 1 (19:23):
I'm always up for being part of a trial. I've
been part of trials my entire life. I've joined a
few of those types of groups and I'm planning on
joining Heartworks as well. I think it's really important to
figure out what's working overall. Are You're not going to
get one hundred percent accuracy with these things, just because
people are so individual and so different depending on how
(19:45):
and where they grew up.
Speaker 2 (19:46):
But I think getting big pictures.
Speaker 1 (19:48):
Of what works generally is important for not only people
with heart defects, but people generally.
Speaker 3 (19:55):
What do you mean people generally?
Speaker 1 (19:58):
I mean there's a lot of things that can happen
to people health wise as they get older. Having the
knowledge base of different thoughts of illness as it can
help a lot of people in the future.
Speaker 3 (20:10):
Right, it may be to be yeah, it might be
overgeneralized to other chronically ill populations, or yeah, that makes
a lot of sense.
Speaker 2 (20:20):
Absolutely yeah.
Speaker 6 (20:26):
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,
(20:46):
please visit our website at www Congenitalheartdefects dot com for
information about HD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
are listening to Heart to Heart with Amma. If you
(21:07):
have a question or comment that you would like to
address on our show, please send an email to Anna
Jaworski 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 3 (21:26):
Tyler, You're working full time, going to school, serving on
this planning committee. How do you balance all of these
different activities.
Speaker 1 (21:36):
I'm not entirely sure how I do and I do.
I'm actually working part time right now. I'm working twenty
four hours a week. School is part time as well,
but it's a lot of work to get a master's degree. Yeah,
so it's not easy being part time and I can't
focus all my time on it. But I think part
(21:56):
of it is just putting your nose to the grindstone
and saying, do you want to get this done? Then
you have to actually work on it, which has been
difficult for me throughout my life as a procrastinator. I've
always tended to put things on the back burner until
it has to be taken care of.
Speaker 2 (22:13):
So that's been part of.
Speaker 1 (22:15):
Getting the Master's tree, as we figure out how to
prioritize what's important to me, how to put that first
opposed to the fun things that I wanted to do.
Speaker 3 (22:27):
All right, it's always more fun to go to a baseball.
Speaker 1 (22:29):
Game, yeah, or watch TV show or going out with friends. Sure,
and sometimes it's like, you have to get this paper
done by the weekend or you're not going to pass
the class.
Speaker 3 (22:41):
Right right, So that kind of forces you into a position.
I'll better study, better, work on my paper better, Yeah,
go to class.
Speaker 1 (22:50):
And knowing that I can do it is very helpful.
I've always known that I was intelligent, but I didn't
always show it. As my parents will tell you, I
didn't know I show it.
Speaker 3 (23:03):
Never does any human beings. So, yeah, you're just telling
me you're human, diler, which yes, I know you're human.
I love that.
Speaker 2 (23:12):
That's good.
Speaker 3 (23:12):
That's a good thing. One thing that's been interesting to
me is as time has progressed, we're seeing more and
more adults with PhD who are being diagnosed with ADHD PTSD.
A number of other conditions that are possibly a consequence
of their heart defect or the surgeries that they've had,
(23:35):
or they're just now recognizing neurologically that some of your
brains took a hit when you had these multiple open
heart surgeries, and they're finally being told you have an
executive function problem and that's because of the part of
your brain it was affected when you had open heart surgery.
For some people, it's been really eye opening, and it's
(23:58):
given them almost a synth of really is that it's
not like I'm a bad person, or I'm lazy or
I'm stupid. There's this reason behind it that makes a
whole lot of sense. Has anything like that come up
for you, I don't think so.
Speaker 1 (24:12):
I am in therapy for multiple reasons, not just the
heart defect. I can thank my brothers for that. I
don't think I've been diagnosed with anything like that. I
don't think people suspect it because I've been told by
people that just by looking at me, they wouldn't know
that I had a heart defect, which is a good
thing generally. Even my cardiologist told me last time I
(24:36):
saw him that if he saw me on the street,
you wouldn't know I.
Speaker 2 (24:39):
Had a heart defect.
Speaker 3 (24:40):
Isn't that lovely?
Speaker 2 (24:41):
Which is always good to hear. Yeah, I means you're
doing pretty well.
Speaker 3 (24:46):
Yeah.
Speaker 1 (24:47):
See, I know there are people that do have issues
with that and do need help, and they should get
the help they need. Yeah, I'm all forgetting therapy or
medications or whatever else people need to help them survive
every day.
Speaker 2 (25:03):
But I've never had that issue.
Speaker 1 (25:05):
I think my older brother was the same way as
I was, being a procrastinator, and we valued different things
other than education as we went through school, Even though
we both have college degrees, it was not as easy
for us as it was for my sister and younger brother.
Speaker 3 (25:24):
Interesting.
Speaker 2 (25:25):
I don't know if that's just the way we're made
or what.
Speaker 3 (25:28):
But and he's not a twin or anything. You guys
have a couple of years difference.
Speaker 2 (25:34):
About three years between us.
Speaker 3 (25:35):
Yeah, let's look back in your history just a wee bit,
because you did write for my Books at Heart as
a Heart Warrior about your vocal cord Proustis. I'm wondering
if that affected you, because we know that beach and
language development is critical when it comes to understanding the academics. Later,
(26:03):
it was really hard for people to hear you, or
for you to make yourself understood for a long time.
How do you feel that ashected you academically as.
Speaker 1 (26:13):
A child, I think it was more of a social
barrier than it was an academic one. As far as
the academics plant that could do all the work. If
they gave me a test, I would pass the test,
usually with flying colors. But I think socially it was more
of a barrier that way, because I couldn't speak up
and I couldn't get people's attention. If if I wanted
(26:35):
to talk in class, I had to make sure everybody
was as quite as they could be so the teacher
could hear me. So I think I became more introverted
than I otherwise would have. Sure makes sense because I
figured if I can't talk, I better at least listen
to what the people are saying. So I became a
really good listener, which is a good school to have.
(26:56):
But as far as sharing my story and my thoughts,
I think the fourteenish years that I spent with a
paralyzedble record had a much bigger effect on my social
growth than it did my academic growth.
Speaker 3 (27:13):
You telled a sweet story in the book about your
relationship with your grandfather. Can you talk a little bit
about that.
Speaker 1 (27:24):
Yeah, my grandfather was born in nineteen eighteen, so he
was I think in his seventies when I was born
in nineteen ninety three, and he had been in the
war and he couldn't hear as well as he used
to at the time I came around. She was always
yelling and he seemed like a grouch, but he was
a big teddy bear. My mom was afraid of him
(27:46):
for the first few years that my dad and her
were married, so you'd have.
Speaker 2 (27:52):
To ask her more about that story.
Speaker 1 (27:53):
But yeah, he had a hard time hearing me specifically,
and my grandfather had just had a stroke, like the
week before my surgery after the vocal record and on
the way home from the hospital, my parents decided to
call my uncle because he was at the hospital with
my grandfather and he heard me speak his language. Girls
(28:17):
had taken it dive after the stroke, so he could
speak back. But my uncle told me that he was
in tears hearing me speak with a full voice for once,
and he passed away about a week later after that.
Speaker 3 (28:31):
So I was so glad he got a chance to
hear your voice.
Speaker 2 (28:36):
Yeah, so am I.
Speaker 3 (28:38):
That's amazing.
Speaker 1 (28:40):
I was always one of his favorites, and one of
his wishes was me to have a full voice, and
he finally got that right before he passed.
Speaker 3 (28:49):
So, oh my gosh, that's so sweet and it makes
perfect sense. I'm a grand nearer now myself, and of
course you want only the best for your grandchildren. And
I'm sure he noticed how difficult it was for you.
Do you think it affected your relationship with your siblings
as well?
Speaker 1 (29:07):
My older brother talked enough for both of us. I
don't think it affected it too much. My older brother
was always the more talkative, outgoing one, and my older
brother is also very extroverted, so between the two of them,
it's hard to get a word in edgeways.
Speaker 3 (29:23):
Are you able to do so better now?
Speaker 1 (29:25):
I can do that now a lot better. Sometimes they
just let them talk and talk.
Speaker 3 (29:29):
They needed a brother who was a good listen there.
Speaker 2 (29:31):
Yeah, that's too funny.
Speaker 3 (29:34):
So you've moved out of your parental home. How are
you doing with the transition of living away from your family.
Speaker 2 (29:42):
I'm doing really well.
Speaker 1 (29:43):
Not that I'm glad to be away from my parents,
but sometimes it's nice to have some space between them
and me.
Speaker 2 (29:51):
It's about six hours drive between us.
Speaker 3 (29:54):
That's a big drive.
Speaker 1 (29:57):
My parents do it pretty often, especially over the past
few months with all the health issues I've had recently
with the transplant evaluation that I went through.
Speaker 2 (30:08):
I'm almost down.
Speaker 1 (30:08):
Here at least once a month, if not more than
that since March. They're always willing to do it, and
they're glad I'm not in Los Angeles or someplace like
that right flight, so the close enough that if anything happens,
they can be here within six hours. But I think
just being able to be on my own and figuring
out what I want out of life has been really
(30:30):
good for me. Yeah, and meeting people and finding different
places for me to use my talent and skills outside
of single ventrical patient day and the Planning Committee and
things like that, because that's not all.
Speaker 2 (30:42):
Of who I am. That's part of who I am,
it's not all of it.
Speaker 1 (30:46):
So I'm glad to be able to be in Pittsburgh
and use this town as a way to get more
involved in things I enjoy.
Speaker 3 (30:57):
Yeah. It's almost like a launching pad for you, isn't it. Yeah.
Speaker 1 (31:00):
Yeah, I think my parents did a really good job
raising me and all my siblings that they can trust
us to be on our own without needing a lot
of the help. If I asked, they would help. But
it's nice to be on my own and worry about
my stuff as opposed to trying to deal with the
rest of my family all the time.
Speaker 3 (31:21):
It gives you a chance to be on an adult
adult level with your parents instead of still perpetuating the
parent child relationship even though you're thirty. When you live
in your parents' home, it makes him more of a
challenge to treat you as a peer when you're on
your own.
Speaker 1 (31:41):
Yeah, over the past few months, I think my parents
have seen me more than they saw my little brother,
who lives in the same town.
Speaker 2 (31:49):
As they do. He has a very full.
Speaker 1 (31:50):
Schedule as a nurse in the er, and he's very extroverted,
so he has to be with friends all the time.
Speaker 3 (31:57):
Sure, he still lives at home, but he's never don't
live at home.
Speaker 2 (32:00):
He's married in the same town.
Speaker 1 (32:04):
I think it's about a ten or fifteen minute drive
between my parents and his house, but he didn't see
him very often.
Speaker 3 (32:13):
Yeah, you mentioned something in passing, and I know my
listener's ears perked up when you said it, So I
have to ask. You talked about having a heart chance
plant evaluation. Would you mind sharing a little bit more
about that with us and where you stand today.
Speaker 2 (32:30):
Yeah.
Speaker 1 (32:30):
I saw my cardiologists in January, and over the past
year or two years, they've been trying a few different
medications to try to keep everything blowing as well as
supposed to.
Speaker 2 (32:41):
They got to a point.
Speaker 1 (32:42):
Where they decided that I should be evaluated for a transplant.
I had the evaluation of the first big of May
this year, and then right around the beginning of June,
they told me that I was not going to be
on the list because my immune system is too strong,
which is something that's normally a good thing.
Speaker 3 (33:02):
But yeah, I maybe smile. I'm like, he's doing too
well to be on de layers. That's what you want
to hear.
Speaker 1 (33:09):
Well, they said, if it wasn't for the antibodies and
then your system, they would have put me in the list.
Speaker 2 (33:14):
But then I saw my cardiologists.
Speaker 1 (33:15):
Okay, I saw my cardiologists last week and he said
that right now I'm good enough that I can wait
on getting it's like an opinion until after I graduate
in December, and we'll re evaluate then. So I'm doing
really well right now, still doing all my regular activities.
Speaker 2 (33:34):
Which is good.
Speaker 1 (33:36):
Still playing pickleball and going to work and doing school
and hang out with friends here. So as long as
I'm doing that, I think I'm going to be okay
without a transplant. But at some point I think most
of us know we'll all need one.
Speaker 3 (33:52):
I remember reading in the literature years and years ago,
is Trey's plant stage four of the normalod fonteane procedure.
Speaker 2 (34:02):
Yeah.
Speaker 3 (34:03):
I saw lots of different studies. Yes it is. No,
it isn't. And it left us all baffled. It's like, well,
is it isn't it?
Speaker 2 (34:10):
Yeah?
Speaker 3 (34:11):
And the answer is for some people it is, for
some people it's not. You just don't know which camp
you fall into. That you've lived long enough and you're evaluated.
So this condition where you have the antibodies in your
blood is that rare? What exactly does that mean?
Speaker 1 (34:29):
They told me that people who have lots of surgeries
and lots of mechanical parts and to have higher antibody counts,
And when you have a transplant, you want to match
the antibodies as best you can to the donor so
that you're not dealing with that on top of the
other ammunisy press and stuff. So basically what they said
(34:49):
was my donorpool would be really small. Yeah, so it
really wasn't worth putting me on the list.
Speaker 3 (34:55):
Because your anti bodies would attack the other part unless
it was a perfect match.
Speaker 1 (35:01):
Yeah, and even with that, it would still attack it anyway,
which is why you be put on the immunis presence
to right write that, but either immunosipresence wouldn't be strong enough.
Between my dart will being really small and emasu presence,
it wasn't worth taking a risk at this point.
Speaker 3 (35:23):
Okay, Well, that's good to hear that you're doing so well,
and it's also good for me as a mom to
hear that you're getting involved with heart Works and some
of these other organizations that are doing a similar thing
to what doctor Nelson is doing and want to actually
be in touch with the patients so when they do
create some kind of study, they maximize the number of
(35:47):
patients who are involved in that study.
Speaker 2 (35:50):
Yep, I agree.
Speaker 3 (35:52):
What advice do you have for other single ventricle survivors
who want to be involved in helping you with promoting
education as far as SV one, or just getting awareness
about heart to checks out to the general community.
Speaker 1 (36:07):
I think the biggest thing would be attending SV one
or the Patient Day this fall. I know not everybody
can make it. It can be expensive to get to.
A registration is free for patients, but just have to
factor in the cost of travel and hotel. So I
know ideally being there is the best way to do it,
(36:29):
because then you get to talk with all of us
that are already involved. And then I would find groups
on Facebook. I would go to the local care center
see if there's not doing anything as far as reaching out.
I know there's walks and races as well across the
country with the Congenital Heart Foundation and a few other
groups like that. If I were starting over, I would
(36:52):
say get involved in those groups, then the.
Speaker 2 (36:57):
SV one group as well.
Speaker 1 (37:00):
Try to put yourself in places that you think you
would be able to help in, whether it's speaking at
events or being somebody who can give hope like I.
Speaker 2 (37:08):
Do to other families.
Speaker 1 (37:10):
Right, there's room for all kinds of people, whether it's
outgoing or introverted, or people like speaking people who don't
like speaking. We need all types of people to help.
Speaker 3 (37:21):
Are you somebody who will be speaking at the event
this year.
Speaker 1 (37:24):
I'm not sure if I'll be speaking, but I've spoken
at past events. I've spoken at a handful of other non
single ventrical Patient Day events as well, so I'm used
to speaking, and I enjoy speaking, even though I'm pretty
introverted myself and I don't tend to be one that
likes being in the spotlight, but for things that are
important like this, I don't mind doing it.
Speaker 3 (37:45):
I love that. It's interesting because you said earlier something
about how you're not just on the planning committee for
SV one. You're not just somebody who works thereor somebody
who's going to school. There's so much more to you.
And that is something that help said to me even
as a young child. She didn't want to be the
poster child for PhD or for HLHES. I totally understand
(38:07):
that and respect that, but I think maybe that's an
and stoken fear that a lot of patients have, is
that if they attend some of these events, everybody's going
to say, Oh, that's the single ventricle person, or that's
the natual aHUS person. Can you talk to that? Is
that your experience when you go to these events.
Speaker 2 (38:28):
At the events.
Speaker 1 (38:29):
Since we all know that we each have a similar defect,
it's not really spoken about all that much. We tend
to talk more about our lives and what's going on
and the football games that are happening, and whatever else
is going on outside of our hearts. It gets brought
up occasionally with people because sometimes they have issues that
(38:50):
wan't to talk about, but for the most part, we're
regular people doing regular things, talking about the normal things
that people talk about at events like that. We're just friends.
A lot of us are friends with each other, so
that helps. Anytime you go and see him in person.
There's new things to talk about. People are getting married
or having kids, or have family members that are doing
(39:14):
those things, are getting new jobs, things like that that
are exciting to talk about.
Speaker 3 (39:19):
Normal everyday things that everybody talks in with their friends.
That's what I love about it. So if you're a
patient and you're out there and you're like, I don't know,
I why she get a gag. I don't want to
be labeled. It says to me like you have to
worry about that. How many already knows. If you're going there,
you're either the parent of somebody, a professional who works
with people who have heart conditions, or you're one of
(39:41):
the survivors, you don't even have to go through that.
Do you have a name tag that says heart mom,
ah HF SV or anything like that.
Speaker 1 (39:50):
Name tags the ones you get from the event will
have your name and your care center on it.
Speaker 3 (39:56):
I love your center.
Speaker 1 (39:58):
And then they have optional things you can place on
your badge that has like a parent or cardiologist or
patient or whatever else. Number of things they have as options,
so you don't have to place your label on if
you don't want to, but they're optional.
Speaker 3 (40:17):
But if you do, then you know who you're talking
to and you don't even around to go through that conversation.
Speaker 2 (40:22):
Right yep.
Speaker 1 (40:22):
And someone will was a speaker if they're speaking at
the event or things like that. You'd be anonymous if
you want. Otherwise you can announce the world what you
have or what you're doing.
Speaker 3 (40:33):
Uh huh, I love that. Before we go, can you
tell us how others can get involved with Single Vitrical
Patient Day.
Speaker 1 (40:40):
Yeah, I think I'm not sure when registration will open up.
I would keep an eye out for that on Facebook,
and I think the website will have it as well.
Speaker 3 (40:49):
A SV one website, right, and I'll have the link
to that in the show notes friends, So in a
description of the show, I'll be including that link, yep.
Speaker 1 (40:57):
And then if you're friends with Meg Detier or Amanda
Harper or Alisha Wilmoth, many of those people that are
on the Planet Committee, they'll all be posting about it
on Facebook and.
Speaker 3 (41:08):
Instagram especially, are really good about putting information on LinkedIn.
I'm always seeing Megan Megan posting about that, so that's
really helpful too, great, Or if you're friends with Tyler Shydock, Yeah, I.
Speaker 2 (41:22):
Don't post a whole lot.
Speaker 1 (41:23):
In general, you can be my friend, but I don't
post a whole lot.
Speaker 3 (41:27):
Okay, I have to break that rule a little bit
to help out when it gets closer to the event. Yeah, well,
thank you so much for coming on a program today, Tyler.
The time has just flown. It's been so much fun
catching up with you and learning more about sc One
and how you got involved. And I'm amazed at how
(41:50):
your voice sounds. It's absolutely fabulous.
Speaker 1 (41:53):
Yeah, it's been great being here, and thank you for
the compliment. And I'm glad to share some more stories
and I probably think you can get involved, and my
own life has gone so far.
Speaker 3 (42:08):
As I reflect on today's episode, I can't help but
think back to when my daughter Hope was first diagnosed
with hypoplastic left heart syndrome over thirty years ago. That
diagnosis completely changed my life. Like Christy Pania, I was
determined to do everything I could to save my child.
For Hope, that meant trying to understand the three surgeries
(42:29):
she would need, surgeries that were still considered experimental in
the nineteen nineties.
Speaker 4 (42:34):
I feel so blessed that I didn't have to fight
the government for access to treatment the way Christie is
having to today. But I understand her struggle deeply, and
I learned when Hope's diagnosis shifted to single ventricle after
her third open heart surgery, Because sometimes diagnoses evolve and
we parents have to pivot, adapt and keep fighting.
Speaker 3 (42:56):
That fight never ends. Tyler's story is a beautiful reminder
of what can happen when we do keep fighting. Our
children grow up, pursue their passions, give back to their community,
and inspire the next generation. I was also reminded of
this just yesterday when I recorded a live episode Apart
to Heart Danna exclusively for patrons of volunteers.
Speaker 4 (43:19):
Every month we gathered together for an unscripted conversation around
a different theme. This month, we talked about education and
careers with members at the PhD community. We heard from
an adult with nomenclature HLHS Anny Alcich about the accommodation
she needed to succeed in school, from a patron in
(43:40):
the UK with drug induce on QT syndrome Ericson Beattie,
who shared how open University opened doors at teachers once
thought were closed, And from a volunteer.
Speaker 3 (43:51):
With cerebral palsy, Spencer Keaton, who showed how five oh
four plans made it possible for him to earn a
bachelor's degree. We even heard from dad of a single
ventricle adult who found his own.
Speaker 4 (44:02):
Creative ways to support his child's education. Next month, our
focus will be on global PhD perspectives and I can't
wait to hear the stories and insights from our worldwide community.
These monthly conversations are some of my favorite moments, and
I hope more of you will consider joining us as
patrons are volunteers so you can be part of them too.
(44:25):
And speaking of adults with HLHS, in the next episode
of Heart to Heart with Anna, I'll be talking with
Steve Hutchison. Steve shares what it was like growing up
with hypoplastic left art syndrome and how he balances life
today as a husband, father, and breadwinner, all while managing
a chronic condition. His story is a powerful reminder that
(44:46):
while HLHS begins as a childhood diagnosis, it's something people carry.
Speaker 3 (44:51):
Throughout their entire lives. My friends, whether you are a parent, patient, doctor, teacher,
or advocate, this community means you. We need your stories,
your voices, and your commitment to keep moving forward until
next time. Remember, my friends, you are not alone.
Speaker 6 (45:30):
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,
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