0:46

It's a privilege not all heart mothers yet

0:48

to have their children become

0:50

adults . For us it's a

0:53

privilege and a blessing .

0:55

It is a privilege and a blessing , no matter

0:57

how many minutes , hours

0:59

, days , years of waste been worrying

1:02

about them . It

1:04

is totally a privilege and it

1:06

is also very

1:08

humbling . Greetings

1:20

, friends and welcome to Heart to Heart with Eva . I

1:23

am Anna Jorski , heart mom to an adult with a single-vental

1:25

heart , author , publisher and podcaster . I'm

1:27

very excited to offer you another special

1:30

edition of the podcast . In this

1:32

episode of Heart to Heart with Eva , veteran

1:34

heart mom Rita Spodkins and I will

1:36

pick up where we left off last week . In

1:39

the second and third segments , megan

1:41

Tones and I will continue reading from our

1:43

new book , the Heart of a Heart Warrior . For

1:47

those of you who are unfamiliar with the book , this

1:49

is a nonfiction anthology of essays

1:52

and works of art by 40 adults

1:54

with congenital heart defects . Heart

1:56

warrior Megan Tones and I co-edited

1:59

the book . For the last two weeks

2:01

we've been reading from the book for your pleasure

2:03

. This week , in segment two of

2:05

the podcast , we'll take turns reading

2:07

chapter two , segment three

2:09

of the podcast . We'll be reading the first

2:12

two essays from chapter three . Last

2:15

week , my dear friend Rita Spodkins

2:17

and I talked about our journey of

2:19

raising children born with funky

2:21

hearts to adulthood at a time

2:23

when there were few resources available

2:25

for parents . Rita's daughter

2:27

, victoria , is about 10 years older

2:29

than my daughter Hope . I'll put the link

2:31

in the show notes . We hope you enjoy

2:33

this episode . So here

2:36

we go . In this segment

2:38

, let's talk about navigating

2:40

life and death issues . This

2:43

is something that we have to think about because both

2:45

of us are getting older . Frank and I have already

2:47

made arrangements for what we want done

2:49

when we die . Is this something

2:51

that you and Robert have talked about or done

2:54

?

2:55

We have our wills and all

2:57

the documents that we need . We

3:00

keep saying I don't know where I'm going to live when I die , so

3:03

I don't know if I'll still be living here

3:05

or I'll be somewhere else . So no , I haven't

3:08

.

3:08

I have my medical and financial power of

3:10

attorney and I have all that

3:12

and we wrote our will and paid

3:15

to be cremated .

3:16

Oh , did you . Yeah , I don't want to be cremated

3:18

.

3:19

My mom didn't want to be cremated either , but

3:21

Joey's in Florida . I

3:23

don't know where Hope will be , because if she ever

3:25

gets a chance to get a job in New York

3:27

she'll be gone , and then

3:29

Frank and I would be buried here in Texas

3:32

. There would be nobody to

3:34

look after the grave , and I don't want them feeling

3:36

like they have to fly to Texas just to

3:38

take care of a grave .

3:40

My parents are both in Arlington National

3:42

Cemetery , so we don't

3:45

go unless we're in the DC area .

3:47

My sister and I go visit my mother's

3:49

grave every year around her birthday . We

3:51

make it sisterly time , we

3:54

take a few days and clean the grave

3:56

site and we talk to her and

3:58

sing her happy birthday . So

4:02

have you talked to Victoria about

4:04

a medical power of attorney or ?

4:05

financial attorney . Yes , she has all of that . She

4:08

has all of that too .

4:09

When did ?

4:10

she get all of that . She just got

4:12

that recently . She decided

4:14

it was time .

4:16

I talked to my kid . I was about that before

4:19

Hope's last surgery . Hope

4:21

had surgery at 17 and

4:24

Joey at that point had a

4:26

girlfriend . They weren't married yet and

4:29

I said you really should have

4:31

your medical and financial

4:33

power of attorney and your will made

4:35

just in case something were to

4:38

happen . Both of my children

4:40

did that then and

4:43

they say that you should

4:45

look at your will and all

4:47

of your important papers every

4:49

time you get your driver's license renewed

4:52

, that that's a good rule of thumb

4:54

to you . So I encourage my kids

4:56

to do that . And then , of course

4:59

, anytime you have a major life

5:01

changing event , like Joey and

5:03

Ashley had Rowan- I

5:05

know we hadn't redone ours until

5:07

maybe a couple of years ago .

5:09

The kids were still going to our

5:11

relative . Something happened

5:13

to both of us . It was

5:16

like , well , I don't think they'll want you anymore .

5:19

Things have changed Well

5:23

, Rita . Today people talk

5:25

about adulting and

5:27

I think that making those plans for what will happen

5:29

when you're gone are part of adulting

5:31

. And in college , do you think

5:33

we parents of adults with cajole heart

5:35

defects need to share with our adults born

5:38

with CHD's ?

5:41

I did talk to Victoria about getting a will

5:43

getting power attorney doing those

5:45

things . I didn't make

5:47

her do it . That was her decision to

5:50

do it when she was ready . She's

5:53

done that . She has

5:55

a dog . She's a dog mom . Something happens

5:57

to her . What happens to Shiloh

5:59

? I

6:01

love Shiloh .

6:05

She loves grandma too .

6:07

She does , so

6:10

those kind of things that need to be taken pure

6:12

.

6:13

I was just talking to one

6:16

of the members of the CHC podcast

6:18

I'm the executive producer for that podcast

6:20

and we were talking about disability

6:23

. I thought , wow

6:26

, I know Frank has short and

6:28

long term disability . Where

6:30

he works he pays into an

6:32

account and in case of the war to happen

6:34

to him he has that

6:36

as a failsafe . But

6:39

I don't know if Hope has that . I

6:41

bet Victoria does , working

6:43

for the VA .

6:45

I don't think she does , because that's something I

6:47

asked her about way , way back , and

6:49

I think she told me it wasn't available

6:51

to them . So

6:55

they must have something else , or their insurance . I'm

6:57

not really sure .

6:59

I think that might be a good thing for

7:01

us to talk to them about . So

7:03

, for those of you who are listening

7:05

, if you have an adult with a CHD

7:08

and maybe they're applying for jobs

7:10

, they're getting ready to get their first job and they're

7:12

looking at benefits and trying to compare which

7:15

job would be a better job for them . If

7:17

one job offers long

7:19

and short term disability and the other

7:22

does it , all things are equal , you might

7:24

sway them to go towards

7:26

the one that offers that disability , because that can

7:28

really make a big difference in your life , whether

7:30

you have a hard effect or not .

7:32

Right , we were talking to some young people not

7:35

long ago about long term healthcare

7:38

, where you get a policy

7:40

in case you need to go to a nursing home . Is

7:43

that something that's very important too

7:45

?

7:46

Yeah , and the younger you are when

7:48

you start a policy like that

7:50

.

7:50

The two bird is right .

7:52

Now I don't know if they promise that it's never

7:54

going to go up , I bet it still goes up as you get

7:56

older . Probably yeah , but

7:59

it's a lot more expensive if you

8:01

wait when my dad needed

8:04

round the clock care .

8:05

We discovered how expensive it

8:07

was for Robert and I opted to

8:10

take out the long term healthcare policy

8:12

.

8:12

Oh , did you . So , you all do have that

8:15

, yes , we do .

8:16

My dad stayed at home and we had caregivers . My

8:18

mom was not able to do everything that

8:21

he needed . She was elderly

8:23

my dad was 91 when they

8:26

got the caregivers . My mom was in her

8:28

late 80s and there

8:30

just were a lot of things she couldn't do . Now she didn't like

8:32

having the caregivers around , but

8:34

she needed them because it was

8:36

just too much .

8:37

Right For her to be able to lift your dad

8:40

or do anything like that would have been

8:42

really difficult .

8:43

Exactly .

8:44

And apparently longevity runs in your family

8:46

. If your dad was in his 90s

8:48

, how old was your mom when she passed Almost

8:50

?

8:50

90 . Wow , wow , we're

8:53

not short of 90 .

8:55

Wow , well , it sounds like it was

8:57

a good decision for you to buy that

8:59

additional policy . Yeah , I

9:02

think it's hard to talk to our kids about

9:04

things like this .

9:05

I know Whether

9:08

they're hard-hungry or not , don't you ? Yeah , I don't want to talk to

9:10

the one that isn't hard-healthy

9:13

, I don't want

9:15

to talk to the one that

9:17

isn't hard-healthy . I

9:19

know Victoria thinks about that , so

9:21

to me that makes it oh , you

9:24

don't want to tell your kid , okay , cuz you have a heart defect

9:26

. You're probably gonna die sooner

9:28

. Hmm , I'm

9:30

sure she probably thinks that , but

9:33

we don't know . We don't know who's gonna die .

9:34

We don't know . That's the thing that

9:37

we don't know , and I know . With

9:39

Joey I worried a lot

9:41

more about him because he is

9:43

a little bit more Impetuous and a

9:45

little bit more reckless not so

9:48

much now that he's married and has a

9:50

child before that yeah

9:53

, before that I

9:57

was more worried about Joey . Yeah

9:59

, I think the thing that

10:01

makes it uncomfortable for me to talk

10:03

to you some of these topics with hope is

10:05

that I Don't want her to think

10:08

oh , you are going to become

10:10

disabled . Oh right , you are

10:12

going to need this or that , not

10:14

as part of time is it . Yeah

10:16

, this is part of that adult thing . All adults

10:19

really need to think about this and prepare

10:22

for eventualities or possibilities

10:24

, because the more prepared you are financially

10:27

, the less devastating that

10:29

is . It's already devastating when you

10:31

have a car accident or if something

10:33

should happen and you'd become disabled

10:36

. That's already devastating . But

10:38

then to add on top of that financial

10:40

worries that least if you're doing

10:42

this planning Financially

10:45

, you've got things taken care of

10:47

. So if something horrible happens

10:49

, at least you don't have to worry about the financial

10:51

end . And I think for a lot of people

10:53

it's the financial aspect that

10:56

is the most daunting and the most

10:58

stressful when you're going through something

11:00

bad .

11:01

No , it's like with the insurance . There were times when

11:03

Robert was going from one job to another

11:06

and that then there was a waiting period

11:08

when pre-existing would be covered

11:10

.

11:11

So that was always a scary time , you

11:13

know right and I remember

11:15

it used to be pretty long , depending

11:17

on the policy . It could be six months

11:19

to a year before you were allowed to have an

11:22

incident that was related

11:24

to the pre-existing condition , right ? And

11:26

when you have a child with a heart defect

11:29

, that's a long time especially since

11:31

most of our kids had to be seen at least

11:33

annually for echoes and EKGs

11:36

, that some of those tests , especially the

11:38

echoes with Doppler , yeah , very expensive

11:40

. It's nothing for that to be a couple thousand

11:42

dollars .

11:44

And Victoria was always seen at least every

11:46

six months . The very least right

11:48

. So was to yeah

11:51

luckily , the time that it happened she

11:53

was very stable , so we didn't

11:55

have anything that the doctors

11:57

had to say it was pre-existing

11:59

, so that worked

12:01

, but still it's something

12:04

you have to think about , there's so

12:06

many things you have to think about as adults

12:08

.

12:08

I don't know . I thought it would be easier

12:11

when my kid became an adult

12:13

and I think it's some ways it's harder

12:15

.

12:16

No , I agree , I think it's harder . Yeah

12:19

, can't tell them what to do anymore

12:21

, for I know they don't have to listen

12:23

to us exactly .

12:25

That's a hard part , darn it . I've done all

12:27

this research and you're not going to take my advice

12:30

exactly exactly .

12:33

I've lived so many more years than you have

12:35

. I know stuff .

12:38

Yeah , they don't think we know anything .

12:40

Well , that's not true I ?

12:41

know and hope are very sweet

12:44

and I do think that they pay credence

12:46

To what we know . And I

12:48

will say this for my daughter anyway

12:50

she's very headstrong

12:53

. That has served her well

12:55

as a heart warrior . She has needed

12:57

to have that very fierce

13:00

Personality . I don't like

13:02

it when it's fierce and she's not fighting for

13:04

what I believe in . Exactly against

13:06

me , you know however , I will say

13:09

there was once that I really

13:11

felt that she needed a certain

13:13

device and she disagreed with me , the

13:15

the syphorously . And

13:18

now , looking back , I think she was

13:20

right and I'm glad that things worked

13:22

out the way they did . I'm glad that as

13:24

much as in my heart I was dreading

13:27

it and I wasn't happy and I was scared

13:29

, quite honestly , I'm

13:31

glad that she can be such a good advocate

13:34

for herself and I know Victoria

13:36

is also a very good advocate

13:38

.

13:39

Yes , she is herself . She's very

13:41

stubborn too , but , like you said

13:43

, I think that's definitely what a heart warrior

13:45

needs to be stubborn and headstrong

13:47

. That's part of their strength .

13:51

It is part of their strength and we've been lucky

13:53

to be their mothers .

13:54

Yes , we have . It's a privilege . Not

13:56

all heart mothers yet to have their

13:59

children become adults . For

14:01

us , it's a privilege and a blessing .

14:05

It is a privilege and a blessing , no matter

14:07

how many minutes , hours

14:09

, days , years of waste been worrying

14:11

about them . It

14:13

is totally a privilege and it

14:15

is also very

14:17

humbling . We owe

14:20

a huge debt of thanks to

14:22

so many different people the

14:24

doctors , the nurses , the techs

14:26

, the pharmacists .

14:28

The list goes on and on the

14:30

doctors , the parents that were brave

14:32

enough to let their kids

14:35

have the surgeries before they were .

14:36

You know totally Well they were

14:38

still very experimental . I

14:41

know we were told that HOPE's

14:43

procedure was considered experimental

14:45

in the 90s . So

14:47

certainly people before that

14:50

were also dealing with these experimental

14:53

procedures . And you're right . If we hadn't

14:55

had those parents and

14:57

heartwarriors willing to undergo

15:00

very uncertain futures

15:02

, our children's future may

15:04

not be what it is today .

15:08

Something we have to be very grateful for .

15:11

Absolutely Well , rita . As

15:13

always , I enjoyed talking with you today

15:15

. Thank you so much for coming on the program .

15:18

Thank you for having me , aglombe Enno . It's always a

15:20

pleasure . Well , friends stay

15:22

tuned .

15:23

Next we'll listen to Amiga Times and

15:25

his Wee-Wee from the Heart of a Heartwarrior

15:28

, Volume 1 Survival . This

15:31

content is not intended to be a substitute for

15:33

professional medical advice , diagnosis

15:35

or treatment . The opinions expressed

15:37

in the podcast are not those of

15:40

Hearts Unite the Globe , but of the hosts

15:42

and guests , and are intended to spark

15:44

discussion about issues pertaining to congenital

15:47

heart disease or bereavement .

15:51

You are listening to Heart to Heart with Anna . If

15:54

you have a question or comment that you would like

15:56

to address on our show , please send an

15:58

email to annajuorski at anna

16:00

at hearttoheartwithannacom

16:02

. That's Anna at hearttoheartwithannacom

16:06

. Now back to Heart to Heart

16:08

with Anna .

16:11

Chapter 2 how my CHD

16:13

Defines Me . When

16:15

I decided to put together a book of essays by

16:17

adults with congenital heart defects , I

16:19

asked my heartwarrior to contribute

16:21

. I had tentatively named the book

16:24

the Heart of a Heartwarrior and I asked

16:26

for an essay . I'm not a heartwarrior

16:28

. I'm not a survivor or a thriver

16:30

either . Right about that , I

16:33

said . I said that not all heartwarriors

16:35

perceived themselves as such and

16:38

that in the 27 years I'd been a member

16:40

of the congenital heart defect community , those

16:43

terms heartwarrior , heart

16:45

survivor and heart thriver were

16:47

fairly new . There were other people

16:49

who felt the same way my heartwarrior did

16:51

, and they needed their views validated as

16:53

well . With reluctance

16:55

, my heartwarrior wrote an essay , received

16:58

feedback , revised it and finally

17:00

got it into a form that everyone was satisfied

17:03

with . During the four years that we

17:05

have been working on this book , my heartwarrior

17:07

has been going through a more important transition

17:10

. My heartwarrior was born

17:12

Alexander and lived as a male for

17:14

27 years . In January

17:17

2022 , alex informed

17:19

Frank and me he no longer identified

17:21

as a male . Hope is a

17:23

new name . My transgender daughter prefers

17:26

to go by . She doesn't want to be identified

17:28

by her cardiac condition . She

17:30

wants people to know her for who she is , aside

17:33

from her heart condition , but she's one

17:35

of the lucky ones . Yes , she's had

17:37

three open heart surgeries , but she's been

17:39

able to fully recover and she leads a full

17:41

life , which includes full time employment

17:44

, living alone in an apartment and

17:46

a life full of friends , family and

17:48

activities . Not everyone born

17:51

with a heart defect is that lucky . Some

17:53

people who are born with heart defects are not privileged

17:55

enough to lead the life they wish they could

17:57

. Low saturation levels handicap

18:00

them . They have to adjust their schedules because

18:02

of some drugs they must take , they're recovering

18:05

from complications from some cardiac

18:07

procedure or they simply lack

18:09

the energy to work full time . Sometimes

18:11

people's hearts give out completely , forcing

18:13

them to make really tough decisions . Should

18:16

they opt for an assist device ? Should

18:18

they have another surgery or procedure

18:20

? Do the risks outweigh the benefits

18:22

? Should they opt to be put on the transplant

18:25

list ? For some people , their

18:27

heart dictates their lives , whether or not

18:29

they wanted to . One term

18:31

I've learned from working on the Breved

18:33

but Still Me podcast is post-traumatic

18:36

growth , and it is a term that means

18:38

growth from a traumatic experience

18:40

. I believe I've experienced

18:42

post-traumatic growth over the years by working

18:44

with people in the CHD community

18:46

. Some adults with CHDs

18:48

also experience that kind of growth

18:50

. In this chapter you'll meet my daughter

18:53

, but you'll also meet two other heart warriors

18:55

. Jason Crutchley had to make some of

18:57

the hard decisions I alluded to earlier

18:59

. He tells us how his heart defect

19:01

has to find him . Christie Silman

19:04

, while not needing a heart transplant like

19:06

Jason , has faced other trials

19:08

in her life and from some of those experiences

19:11

she has grown into a remarkable

19:13

woman , mother and nurse . Not

19:15

a Heart Warrior . By Hope Jaworski

19:18

. I could be a warrior

19:20

, but what does it mean ? Why

19:22

do some people consider themselves warriors

19:25

, another's don't ? I'm

19:27

not a Heart Warrior , but

19:29

I have been a warrior in Dungeons Dragons

19:31

. So why one and not the other

19:33

? Why are we stopping

19:35

already ? Phil the Barbarian asked

19:37

there's still sunlight . We can keep going

19:40

. Sure , but this way we get to sleep

19:42

in a bed . Before reaching a forest , I pointed

19:44

out Boring . He

19:46

grunted as he looked longingly toward

19:49

the cursed forest , hand resting

19:51

on his giant axe . I

19:53

searched my cloak for a pouch of money

19:55

, tossing him one full of copper coins

19:57

. Here . Go drink to your heart's content

19:59

, I suggested , smirking as his eyes

20:02

lit up . We'll go buy supplies and

20:04

meet you at the inn later . He headed

20:06

off merrily , accompanied by Randy R

20:08

Paladin to make sure he didn't start

20:10

a tavern brawl for the fun of it . The

20:13

wizard , the cleric and I went to the marketplace

20:15

spending our meager savings

20:17

on what food and equipment we could afford for

20:19

the upcoming journey . Just one

20:21

last adventure , the wizard lind aside

20:23

, then we can retire . Are

20:26

you ready to live the rest of your life in peace

20:28

? I asked no more running around finding

20:30

monsters and fighting for your life ? Absolutely

20:34

. She nodded emphatically . Someone else

20:36

can take care of monsters . We've done our

20:38

part . It's still kind of fun , I admitted

20:40

, as I examined a collection of daggers , wondering

20:43

if I could justify buying one . I

20:45

might be at it for a while longer , not

20:48

me . She shook her head . Our team's

20:50

cleric nodded in agreement with her . Well

20:53

, more power to you . When you're living

20:55

it up in a big city I'll come visit you

20:57

, I said , forking over a couple of

20:59

gold coins for the enchanted blade . I wanted

21:01

Warriors have some agency

21:04

in the matter . We get to have adventures

21:06

and face danger on purpose . There's

21:09

an end in sight , an option

21:11

to let others take up the torch and carry

21:13

on with your work . I've never

21:15

felt that with my heart condition . It's

21:17

always felt forced on me and every

21:19

part of dealing with it is just a burden

21:22

. Not everybody's like that . We

21:24

all see things differently and uniquely and

21:26

that's important to understand . Another

21:29

tree exploded as Linda hurled fireballs

21:32

. The goblins ran away screaming

21:34

fill , giving chase . We

21:36

let him go . He'd make his way back soon enough

21:38

. The rest of us started putting out

21:40

the fire before it could spread . How

21:43

much more of this ? Randy asked . There

21:45

can't be that many more monsters in here . I

21:48

checked my bag . Eh , there's

21:51

more , I said . He looked

21:53

at me sternly . You mean you need

21:55

to loot more gold from them ? Somebody's

21:58

gotta pay the bills , I said as I

22:00

examined a dropped sword , wondering if

22:02

it would be worth carrying around to sell to someone

22:04

. Besides , we're making a big difference

22:07

. How many travelers did they ambush

22:09

and kill ? We're making this place safer

22:11

. The burnt tree crashed

22:14

to the ground behind us , continuing

22:16

to smolder . Linda had moved on

22:18

to another tree trying to put it out before

22:20

the fire got out of control . As

22:22

soon as we've achieved our purpose , we should

22:24

leave them be . Randy said firmly . Violence

22:27

only gets you so far . I

22:29

pocketed some more gold coins as I continued

22:32

searching the bodies to each their

22:34

own . After all , warriors

22:36

get something meaningful out of their work

22:38

, whether it's serving a higher purpose

22:40

, helping others or just putting food

22:42

on the table . They can feel they've achieved

22:45

something , that they're helping

22:47

, or even just have the right intentions

22:49

. Struggling with my heart defect

22:51

isn't about gaining anything . It's just

22:53

about living . It's survival

22:55

, nothing more than that . The

22:58

sun was rising as we left the forest

23:00

, dragging the troll king's body behind

23:02

us . The villagers saw our

23:04

approach and cheered as we entered the gate

23:07

. I tossed some silver coins

23:09

to them , grinning as they scooped them up eagerly

23:11

. Thank you , brave adventurers

23:13

. The village chief approached us , beaming

23:15

from ear to ear . How can we ever repay

23:18

you for this act of kindness ? Feeling

23:20

the weight of the solid gold crown in my

23:23

bag , I waved away his offer

23:25

. Don't worry about a thing , sir

23:27

, I said , shaking his hand . We're just

23:29

trying to make the world a safer place . Got

23:32

any more of that good ? Ale Phil asked

23:34

More . Of the village followed

23:37

us back to the tavern for drinks and a party

23:39

. The troll king's body was taken

23:41

to be disposed of , though I'm sure the

23:43

tusks and some other parts would be turned

23:45

into trophies . We didn't need it

23:47

any more . A bigger reputation

23:49

and some gold were enough . We

23:51

celebrated until well past sundown

23:54

the entire village full of life

23:56

after being freed from the monster's presence

23:58

. We ate better than we had in

24:00

weeks and slept soundly in comfortable beds

24:03

. It was truly the best reward

24:05

we could ask for . At the end

24:07

of the journey , a warrior revels in

24:09

their victory . Chders have

24:11

such long roads to recovery and

24:13

not everybody sees an end to that journey

24:16

. Even those of us that can rest and

24:18

be at ease know that it'll

24:20

happen again one day . There are some things

24:22

in common to the life of a warrior , but

24:24

to me the difference is stand out more

24:26

. I'd make a five warrior

24:28

, especially in games , but I'm not

24:30

a heart warrior , and that's okay

24:33

. Everybody should look for what they're good

24:35

at and then be the best version of themselves

24:37

that they can be . Hope

24:40

Jaworski was born in Temple , texas

24:42

, with a single ventricle heart in 1994

24:45

. She lived as a male under the name Alexander

24:47

for 27 years before realizing

24:50

and accepting that she was a transgender

24:52

woman . Hope enjoys writing , playing

24:54

tabletop games with friends and 3D printing

24:56

. She worked in healthcare for eight

24:59

years .

25:00

How my CHD Defines Me by

25:03

Jason Crutchley . All

25:05

of us are defined by what we are born

25:07

with . We're a person born

25:09

with a congenital heart defect . That

25:12

is certainly true . However

25:14

, it's how it defines us that makes us

25:16

all different . In 1976

25:20

, I was born with atrial septal

25:22

defect , transposition

25:24

of the great vessels , subaortic

25:27

stenosis and pulmonary atresia

25:29

. My mother was told I wouldn't

25:31

make it past my first hour . After

25:34

several hours she could take me home

25:37

. I continued

25:39

to survive for another six weeks when

25:41

I had my first procedure , called a pulmonary

25:43

banding . Again , the

25:45

odds were stacked against me and they expected

25:48

me to only have three good years

25:50

. At age six I

25:52

was the first child at UCLA

25:55

to undergo the Fontan procedure

25:57

with a 2% survival

25:59

expectancy . Years

26:01

later I had several episodes

26:04

of SVT in which cardioversion

26:06

was the only treatment I could

26:08

get . At 21 , I had a lateral

26:10

tunnel conversion , revision of

26:13

the Fontan . Three

26:15

pacemaker surgeries had followed by

26:17

the age of 23 . Because

26:20

of all the help I received as a child , I

26:22

knew my mission . My calling

26:24

was to help others . I recall

26:26

, shortly after my Fontan surgery

26:28

, telling my mother I wanted to be a pediatric

26:31

cardiologist and always

26:33

thought I couldn't wait to get my license

26:35

plates for my car which would

26:37

read I am a doc . I

26:40

later decided maybe I wanted to be

26:42

a police officer or firefighter

26:44

, or even get into the military . However

26:48

, because of my heart conditions , I realised

26:50

this could never come to fruition . In

26:53

2005 , I recall

26:55

watching the horrific devastation left

26:57

behind by Hurricane Katrina . As

27:00

I sat down to eat dinner with my

27:02

family at our dinner table , I couldn't

27:05

stop thinking of all my fellow Americans

27:07

who wouldn't be able to enjoy a hot meal on

27:09

their dinner table with their families and

27:11

my heart just sunk . I knew

27:14

deep in my soul that I had to do something

27:16

, but didn't know what or

27:18

even how to help . The

27:21

following morning , the American Red Cross

27:23

was raising money during a telethon

27:25

for the victims of Hurricane Katrina

27:27

. Before being interviewed , the

27:30

Red Cross worker asked for 250

27:32

volunteers who could immediately be deployed

27:35

to the affected areas of Katrina

27:37

to help . I knew

27:39

at that exact moment that is how I could

27:41

help . With no hesitation

27:43

, I called the American Red Cross . After

27:46

getting clearance from my cardiologist

27:48

and several gruelling hours of training

27:50

, I found myself on my way

27:53

to help the victims of Hurricane Katrina

27:55

as an American Red Cross disaster

27:57

services volunteer Finally

28:00

my chance to give back to others what

28:02

I was given , throughout my life , a

28:04

fighting chance . My

28:06

deployment brought me closer to what I had always

28:09

wanted to achieve in this life . It

28:11

brought me closer to new friends and a

28:13

new family . The work was

28:16

hard , tedious and often overwhelming

28:18

. Hours were long and the

28:20

days never seemed to end . I

28:22

would go to bed so exhausted from my day

28:25

and wake up early the following morning eager

28:27

to get back to my job . After

28:30

my two-week deployment , I returned home

28:32

grinning ear to ear , knowing I made a difference

28:34

in someone's life . I

28:37

knew without a doubt this is what I was supposed

28:39

to do . I have since deployed

28:41

to nearly every major disaster in the

28:43

US , except for a few because

28:45

of my health . Having fulfilled

28:48

my goal of saving my country , I

28:50

have helped thousands of others in their greatest

28:52

time of need . I am defined

28:54

by my CHD Because

28:57

of my congenital heart defects . I

28:59

am defined to help others by offering

29:01

my time , energy and talents

29:04

, with just as many skilled and talented

29:06

nurses , doctors and surgeons

29:09

have done with me . Jason

29:12

Crutchley currently resides in Chesterfield

29:14

, virginia , but his hometown

29:16

is Sacramento , california . Jason

29:19

was born with an atrial septal defect

29:22

, transposition of the great arteries

29:24

, subaltexthenosis

29:26

and pulmonary atresia . He

29:29

is a cancer survivor , stroke

29:31

survivor and heart and liver

29:33

transplant recipient , thus effectively

29:36

giving him two birthdays the

29:38

4th of March 1976

29:40

and the 28th of January 2019

29:43

. When he's not working

29:45

, jason's favorite activity is

29:48

cruising on the open water , finding

29:51

myself through service to others .

29:52

By Christie Silman NP . So

29:55

why do you want to work as a cardiovascular

29:57

pediatric ICU nurse , asked

29:59

one of the panelists interviewers as we

30:01

began my most nerve-wracking and life-changing

30:04

job interview . I don't

30:06

, I said with dead-panned confidence

30:08

. Their jaws hit the floor . I

30:10

don't want to work here . This

30:12

is the place of my greatest anxiety

30:15

, fears and traumas , but I am

30:17

compelled to work here . I

30:19

have a passionate drive to work with children

30:22

who have congenital heart disease because

30:24

I too have congenital heart

30:26

disease . A common

30:28

debate in the adult congenital heart

30:30

community centers around when

30:32

we should disclose our congenital

30:35

heart disease CHD to

30:37

other people , especially at

30:39

our place of work . Many people

30:41

, rightfully , are concerned that it will

30:43

make employers wary of hiring

30:45

or promoting them . Other

30:47

times people worry that disclosure of

30:49

their CHD will make them appear weak

30:52

or incapable . I

30:54

have found that many adults with congenital heart disease

30:56

, a CHD , either believe

30:58

the judgments and severely depend on others

31:01

, despite being very capable , or

31:03

they overcompensate it for this judgment

31:05

by being some of the most ambitious individuals

31:08

I've known . My complex

31:10

CHD has drastically shaped

31:12

who I am today and it's difficult

31:14

for me to privatize such an important

31:16

part of my self-identity . However

31:19

, for the first half of my life I

31:21

rarely talked about my CHD . I

31:23

wasn't ashamed of it . I just didn't

31:26

feel I needed it as part of my identity

31:28

Deep down . Even when my

31:30

pediatric cardiologist told me I

31:32

was cured because you turned 18

31:34

years old , I knew that this

31:36

was never something that was going to go away

31:39

. I had to incorporate my

31:41

congenital heart defect within my

31:43

self-identity . I

31:45

never thought I'd work in the medical field . I

31:48

had always had my sights on Hollywood and a professional

31:50

acting career . However , when

31:52

my fourth open heart surgery at 17

31:54

years old resulted in a paralyzed

31:57

vocal cord and losing my stage

31:59

and singing voice , I was forced to

32:01

reevaluate my life . The

32:03

messages from the universe all kept

32:05

pointing me in one direction nursing

32:08

. It was unexpected but

32:10

ultimately the best choice . Then

32:13

I applied for that job in a cardiovascular

32:15

pediatric ICU . I don't

32:17

even remember applying . It was

32:19

almost as if I was guided to it from

32:21

a higher power . I believe

32:24

my honesty in the interview gave

32:26

me that job and I began a wonderfully

32:28

terrifying career as a pediatric

32:30

cardiovascular critical care nurse

32:32

. I found it difficult at

32:34

first to balance my two identities

32:37

as nurse and congenital heart

32:39

patient . I worried that when

32:41

I shared my CHD with my patients

32:43

and their families . I was instilling

32:45

a false sense of hope through my

32:47

lived testimony . My mom

32:49

reminded me that there was never anything

32:51

false about hope . Overall , my

32:53

lived truth became my strength

32:55

as I practiced with a personal level

32:58

of empathy and compassion . Despite

33:00

my direct involvement with inpatient

33:03

pediatric congenital heart care , I

33:05

was still caring for myself , under the false

33:07

pretense that I was cured of

33:09

my CHD and that I didn't really need

33:11

cardiology care . I finally

33:14

listened to my gut feeling that this was

33:16

wrong and began seeking care , but

33:18

wasn't sure where to go . I was too

33:20

old for pediatric cardiology but

33:22

felt too young to be with the older acquired

33:25

heart disease patients in general cardiology

33:27

. It wasn't until I was pregnant

33:29

with my son that I discovered the

33:31

Adult Congenital Heart Association

33:34

and the field of adult congenital

33:36

cardiology . I cried tears

33:39

of joy as I read about these

33:41

physicians who had undergone specialized

33:43

training to care for adults who had previous

33:46

congenital heart surgeries , many

33:48

with outdated techniques , while

33:50

learning about the long-term consequences

33:52

of living our entire lives with

33:55

abnormal hemodynamics and

33:57

scar tissue within our hearts . I

33:59

was fascinated with the research being

34:01

done in this field , from both a medical

34:04

perspective and a personal perspective

34:06

, as the newest medical subspecialty

34:08

in 30 years . Adult congenital

34:11

cardiology has a unique opportunity

34:13

for discovery that feels endless . I

34:16

began immersing myself in the field

34:18

and patient advocacy organizations

34:20

to try to find a place within the community

34:22

. As fate should have it , I

34:25

was introduced to Dr Susan

34:27

Fernandez , the Program Director for

34:29

the Adult Congenital Heart Program at Stanford

34:31

, at a national conference . Dr

34:33

Fernandez's expertise , presentation

34:36

and passion for the care of ACHD

34:38

patients immediately impressed

34:40

me . I asked her advice on how

34:42

to combine my passion for ACHD

34:44

care with my career and

34:47

she recommended I apply for an upcoming

34:49

nursing position with her program

34:51

. Dr Fernandez recommended

34:53

that I not speak about my CHD during

34:55

the interview process and rely solely

34:57

upon my professional experiences to

35:00

exemplify my candidacy for the position

35:02

. I found it impossible to keep hidden

35:04

as each interviewer asked me why

35:06

I wanted to work in the field of adult congenital

35:08

cardiology and ultimately disclosed

35:11

my truth . It is what makes me

35:13

who I am , and to hide it feels deceitful

35:15

and wrong . I've been the nurse

35:18

coordinator for the adult congenital heart program

35:20

at Stanford for nearly five years and

35:23

I'm preparing to leave in just a

35:25

few months to return to school and

35:27

train as an acute care nurse practitioner

35:29

. I'm uncertain of where I'll

35:31

be practicing once done with school , but

35:34

I know I will work in adult congenital

35:36

cardiology . I've found my

35:38

calling and truly can't see myself

35:40

doing anything else . Throughout

35:43

my career as a nurse I have strived

35:45

to remain mindful of how and when

35:47

I disclose my CHD to my patients

35:50

and their families . I have lived

35:52

by the tenant that if it doesn't serve to strengthen

35:55

the therapeutic relationship , bring

35:57

about a higher sense of empathy or

35:59

provide relatability , then

36:01

it isn't necessary to share . I

36:03

never want it to be about me and

36:06

maintain the focus of my interactions

36:08

on my patients' lived experiences

36:10

. I've also struggled with comparisons

36:13

. I've lost patients with similar

36:15

diagnoses as myself . Patients

36:18

struggle with fears and terrors that I

36:20

can relate to . I have yet to undergo

36:22

a major cardiac procedure since becoming

36:24

a nurse , but I know it's in my future

36:27

and I hope I can navigate the experience

36:29

gracefully . The patients who

36:31

have taught me the most about resilience live

36:33

in peaceful acceptance of the natural fear

36:36

associated with living with CHD Enduring

36:39

greatly , dr Brunet Brown

36:41

states , because true belonging

36:44

only happens when we present our authentic

36:46

and perfect selves to the world

36:48

. Our sense of belonging can never

36:50

be greater than our level of self-acceptance

36:53

. Through my career I've

36:55

learned to find a partnership with my CHD

36:58

and have found a level of self-acceptance

37:00

that I never knew was possible . I

37:03

am a nurse living with congenital heart

37:05

disease and I have found myself through

37:07

helping my fellow CHD warriors

37:09

. Christie

37:11

Sillman was born in September 1980

37:14

with Tetralogy of Fallot , with pulmonary atresia

37:17

. Her hometown is Sacramento

37:19

, california . She is married to

37:21

Steve and they have a son named Noah . Christie

37:24

is an adult congenital heart disease practitioner

37:27

.

37:32

Heart to Heart with Anna is a presentation of Hearts

37:34

Unite the Globe and is part of the Hugg Podcast

37:37

Network . Hearts Unite the Globe

37:39

is a non-profit organization devoted to

37:41

providing resources to the congenital heart

37:43

defect community to uplift , empower

37:46

and enrich the lives of our community members

37:48

. If you would like access to free

37:50

resources pertaining to the CHD community

37:52

, please visit our website at wwwcongenitalheartdefectscom

37:57

for information about CHD , the

38:00

hospitals that treat children with CHD , summer

38:02

camps for CHD survivors and much

38:04

, much more .

38:08

Chapter 3 being Active with CHD

38:10

. I never thought I would

38:12

write the introduction to a book chapter

38:15

about being active with a congenital heart

38:17

defect as I didn't even

38:19

like sports video games , except

38:22

for Mario Kart . But here I

38:24

am . At school I

38:26

dreaded physical education and sports

38:29

days as I felt like my

38:31

heart defect was on show through the entire

38:33

school . One time

38:35

I was so far behind the other

38:37

kids in the race that the teacher fired

38:39

the starting gun for the next race . Before

38:43

I knew it I was lapped by not one but

38:45

two groups of kids and I managed to lose

38:47

two races at once . I

38:50

still got us thicker , but I believe

38:52

that incident started my hatred of competitive

38:54

sports . Fortunately

38:57

, in my old era age I

38:59

have learned that the best competitor is yourself

39:02

and I now work towards improving my fitness

39:04

. The first two

39:06

essays are about finding new lifelong

39:09

pathways to enjoy exercise and

39:11

sports when complex CHD

39:13

impede your first choice . Laurie

39:16

Hill and Michael Hills no relation

39:19

. Both had big dreams when

39:21

they were young . Laurie are becoming

39:23

a physical therapist and Michael

39:25

are hockey player Undeterred

39:28

. Laurie shifted her interest towards

39:30

researching the malformed heart's response

39:33

to exercise and Michael

39:35

found his passion for sports in baseball

39:38

, watching hockey and competitive

39:40

curling Sports requiring

39:43

both skill and endurance . Today

39:46

, both Laurie and Michael are studying

39:48

towards Koreans in health and sports

39:50

. The other two essays

39:52

are about exploring physical activity

39:55

via other interests . Alicia

39:57

Lynch , who has complex CHD

40:00

, started experiencing

40:02

arrhythmias just after finishing high

40:04

school . Her symptoms pointed

40:06

to a need for a Fontaine revision

40:08

, which was a shock for the young

40:10

graduate . However , alicia

40:12

found that the surgery opened up new

40:15

opportunities for her , as

40:17

she joined a dance group at college and

40:19

performed in several shows . The

40:21

last essay is about a trip to Egypt

40:24

I took with my husband shortly after I

40:26

turned 30 . While almost

40:28

all the insurance companies fell to

40:30

be a liability , our tour

40:32

guide believed in me and worked tirelessly

40:34

to create the trip of a lifetime . While

40:37

I was no Lara Croft , I was

40:40

grateful to have the experience of climbing

40:42

among such ancient monuments . I

40:45

hope you enjoy these essays and that

40:47

they encourage you to find new ways of being

40:49

active that align with your goals and interests

40:52

.

40:53

For the love of exercise by Laurie Hill

40:55

. The icy icy wind

40:58

blew through my hair and my heart

41:00

was pounding in my ears while flipping

41:02

around in my chest . As my friend and

41:04

I ran in from recess on one

41:06

of the few winter days Houston had

41:08

that year , we had missed the

41:10

five-minute warning bell and barely heard

41:13

the time to go in bell . The

41:15

third grade teacher on duty , who was not

41:17

aware of my heart condition , yelled Hurry up

41:19

, recess is over . Afraid

41:22

we would get in trouble , we decided running

41:24

was the only option . When

41:26

I got back to the classroom my teacher looked at

41:29

me then quickly told a student Lead the

41:31

class into another classroom . While

41:33

she tried not to panic at the close to blueberry

41:35

shade of blue I was , she slowly

41:38

hurried me to the school nurse's office

41:40

. Sit , lay down , take

41:42

some deep breaths and cool down

41:44

, said the obviously scared nurse . She

41:47

helped me pull off the jacket . I was now sweating

41:49

buckets under . She knew I

41:51

just need a time . That

41:53

day I decided I hated active physical

41:56

activity , despite the fact I had loved

41:58

trying dance , cheer , soccer and

42:00

basketball my favorite . Through the

42:02

years I was done . For

42:05

the rest of elementary and middle school I

42:07

was the artsy academic really

42:09

diving into the wonder of science . In

42:12

eighth grade I learned about high school athletic

42:14

training . The program would give me an

42:16

opportunity to learn basic anatomy

42:19

and hands-on experience in treating

42:21

and preventing athletic injuries . The

42:23

athletic part made me leery . I

42:26

knew it would not include any running , but

42:28

I was nervous . Thus

42:30

far I had stuck to my conclusion

42:32

that exercise was detestable

42:34

. I was afraid that I could not physically

42:37

or mentally do it . The

42:39

next time I was encouraged to exercise

42:41

was the day after having my second open

42:43

heart surgery that summer . In

42:46

a dazed state over the beeping

42:48

of machines in my cardiovascular intensive

42:50

care unit CVICU room

42:52

, I heard do you want

42:54

to try to stand and move to a chair from

42:56

a bubbly physical therapist PT

42:58

that had just walked in . I

43:01

just had heart surgery and I am extremely

43:03

sore . Of course I don't want to move

43:05

. I thought I knew I did not

43:07

have a lot to say and to matter . So I obliged

43:10

Swing your legs over and scoot

43:12

to the very edge of the bed . She said Good

43:15

, now I want you to push up as hard

43:17

as you can to lift your body . To

43:19

my surprise I rose off the bed and

43:22

into a somewhat standing position with

43:24

only a little help . Great . Now

43:26

let's turn , she exclaimed . Guide

43:28

with your feet , then let your hips follow

43:31

. Once I was lined up with

43:33

the chair , I plopped down in exhaustion

43:35

. We've got to get you using

43:38

that 85% oxygen saturation

43:40

as officially as possible , the PT

43:42

said when she returned that evening . Follow

43:45

my lead . She said Big breath

43:47

in . We breathe in Good

43:50

. Now purse your lips . She

43:52

tightens her lips and only partially opens

43:54

them to show and breathe

43:57

out through your mouth . I

43:59

take a couple of these breaths on my own

44:01

, as she tells me . This technique

44:03

does not allow you to release as much carbon

44:05

dioxide to trick your body

44:07

into taking more deep breaths . Not

44:10

only will this help keep oxygen levels more

44:12

stable as you walk , but it will also

44:14

help you bring them up faster when they do

44:16

drop . To practice , we

44:18

went out for my first stroll Five

44:20

arduous steps to the door of

44:23

the shoebox size room , two

44:25

steps out and back . Once

44:28

back in bed , while being reattached

44:30

to numerous CVICU machines

44:32

, I stared straight ahead , thinking

44:34

I hated walking before , but I could

44:36

easily make it a hundred yards with minimal

44:38

effort . Now I can barely hobble

44:41

a couple of feet without feeling worn out

44:43

. You just had made your surgery

44:45

. My PT nurse and my parents echoed

44:47

it will get easier . They

44:50

were right . The next morning I

44:52

walked a half lap around the ICU . That

44:55

night I made a whole lap . The next

44:57

few days I was able to make three laps

44:59

around in a single go . I later

45:01

moved down to the less intensive floor

45:04

, becoming less Star Trek Borg

45:06

looking with each Pacer wire , central

45:08

line and IV removed . June

45:11

21 was my 15th birthday

45:13

. One , two

45:15

, three . I was counting

45:18

my breath slowly to keep my oxygen

45:20

saturation from plummeting . This lap

45:22

as I turned the corner with an

45:24

IV pole in tow . Happy

45:26

birthday to you . You

45:29

rupt it from family and friends , along with doctors , nurses

45:31

and therapists that had become family , realizing

45:35

the only way to recovery was to walk

45:37

there . I went on a walk every

45:39

time I was upset , bored or excited

45:41

. It tamed emotions well

45:44

. I eased

45:46

into the physical demands of athletic training

45:48

while falling in love with the way the body

45:50

can move , handle stresses and heal

45:52

itself . In my junior year

45:54

of high school I decided I wanted to be a physical

45:57

therapist . I wanted to help congenital

45:59

heart patients regain their strength , lung

46:02

power and confidence , like my PT

46:04

had done a few summers before for me

46:06

. To the disbelief of

46:08

that blue third grader at recess

46:10

I chose a study applied

46:13

exercise physiology at Texas

46:15

A&M University . It

46:17

was my sophomore year in college and my single

46:19

ventricle heart was not handling the three

46:21

plus miles of walking I was doing each

46:23

day . While trying to amend

46:26

this problem , I was also planning a potential

46:28

third open heart surgery . That had only

46:31

a small likelihood of improving my quality

46:33

of life . To top it off , I

46:35

had also taken a certain infamous

46:38

required class at spring . The

46:40

class graded on one's ability to accomplish

46:43

difficult physical activities . I

46:45

was exempt from the cardiovascular

46:47

test , but I developed a gym routine

46:49

four to five days a week . I

46:52

worked on strengthening my core , legs

46:54

and arms to accomplish modified

46:56

leg press , bench press and

46:58

sit-up tests . I left that

47:00

class in the best shape I had ever

47:03

been in . I felt strong and

47:05

confident . My body and soul

47:07

were ready to take on open heart

47:09

number three . That

47:12

summer my surgeons went in planning for a fontan

47:14

with a mechanical valve or a biventricular

47:17

repair with two mechanical valves

47:19

. Once in there , they concluded

47:21

each plan would cause more problems

47:23

than they would solve . To finish

47:25

the multi-hour ordeal , they

47:27

opened my 19-year-old pulmonary artery

47:30

band a few millimeters to allow

47:32

more pulmonary blood flow . Just

47:35

like before , 24 hours out

47:37

of surgery , a PT came knocking on my

47:39

CVICU door , but this time

47:41

I was ready . Do you know how to fire

47:43

off your quads ? He asked yes

47:45

, I exclaimed Excitedly

47:48

, yet a little surprised . He questioned

47:50

are you sure ? Do you want waist

47:52

support ? No , I got this

47:54

. I responded . I did hundreds of squats

47:56

this spring , training for this moment . Okay

47:59

, he said on three , one

48:02

, two , three , with

48:04

feet shoulder-width apart and

48:07

a straight back where as straight as all

48:09

the wires and tubes would allow . I

48:11

pushed out of the bed . Less

48:13

than five seconds later I was standing

48:15

facing the PT . Can I take

48:17

a couple of steps before sitting ? I

48:21

really hate to say this . My cardiologist

48:23

started the following March , but

48:25

your saturations have steadied out again

48:27

at 82 percent and the regurgitation

48:30

through your common atrioventricular valve is

48:33

still significant and will most

48:35

likely only get worse with time . I

48:37

had already figured this out , since none

48:39

of my pre-op symptoms had resolved . Before

48:43

the appointment I had gotten a really great inpatient

48:46

part-time shadowing position . Though

48:48

I felt at home in a hospital setting , I

48:51

didn't have the physical stamina to do the job

48:53

well for three hours a week , much less

48:55

every day for eight hours . Though

48:57

painful , I started looking into other viable

49:00

careers to help me try to establish

49:02

pediatric cardiac rehabilitation

49:04

programs . I don't think physical

49:06

therapy is a realistic path for you

49:08

. My doctor said I

49:10

was coming to the realization and was afraid

49:12

you'd make it concrete . I replied that

49:15

ended the idea of physical therapy

49:17

. And I was med Like that blue

49:19

third grader all those years ago

49:21

. I was so mad at exercise

49:23

that I decided I would try to steer

49:26

clear of it . This time the

49:28

boycott only lasted three months . After

49:31

much research and paper writing for classes

49:33

, I have realized there is a giant hole

49:35

in scientific literature on

49:38

how mild-formed hearts respond to exercise

49:40

. Maybe helping to fill in these gaps

49:42

is a first step . Just because

49:45

one dream gets cut off doesn't

49:47

mean your ultimate end goal is squashed

49:49

. Lori is a

49:51

26-year-old from the Houston and Dallas

49:53

areas of Texas . She was born

49:55

with right-dominant complete atria ventricular

49:58

canal and double outlet right ventricle

50:00

. Doctors at Texas Children's performed

50:03

a PA band Glenn and

50:05

AV Valve Repair to help improve her quality

50:07

of life . Since writing her essay for this

50:09

book in 2018 , lori

50:11

was listed for a heart transplant , graduated

50:14

from Texas A&M University with

50:16

honors , completed a master of

50:18

public health degree and epidemiology

50:21

, and received her new two-ventrical

50:23

heart . After 400 days of waiting

50:25

. Lori is now attending physician

50:27

assistant school . She can now live

50:29

all the physical activity dreams she dreamt

50:31

of while writing her essay , specifically

50:34

hiking , climbing stairs and

50:36

running . When Lori is not

50:38

working as a professional student , you

50:40

can find her spending time with friends at the

50:43

gym , running the Houston

50:45

Bayous or streaming

50:47

a comfort show .

50:49

Feeling Normal Through Sports . By

50:52

Michael Hills . I

50:54

was born in February 1998

50:57

in Etobicoke , ontario

51:00

, canada . I have

51:02

an amazing sister and two loving parents

51:04

. In August 1998

51:07

, I wasn't feeling well unless taken

51:10

to the doctor . The doctor

51:12

said take him to SickKids in

51:14

Toronto right away . They

51:16

then diagnosed me with a congenital heart

51:19

defect called hyperplastic lactant

51:21

syndrome . I had my

51:23

first of three surgeries shortly after

51:25

being diagnosed . My

51:27

first surgery was the Norwood surgery

51:30

. My second surgery was

51:32

the Glen surgery . The

51:34

third and final surgery was the Fontan

51:37

surgery . All the surgeries

51:39

were risky but I had sell

51:41

up the best surgeons in the world operating

51:44

on me . I spent months

51:46

in the hospital . I don't remember

51:48

any of my time in the hospital and I'm

51:50

thankful for that . Like parents

51:52

do , I can only imagine

51:54

what they were going through . My

51:57

earliest memories are going to my babysitter

51:59

Maria's house to spend the day there

52:01

before I was old enough to be in school

52:04

. I went for walks with

52:06

Maria and the other kids all the time

52:08

when we got snow and I

52:10

had a winter wonderland . I would

52:12

play in the snow with the other kids . We

52:15

made snow angels , snowmen

52:17

and had snowball fights . After

52:20

my surgeries the doctors

52:22

said to my parents you won't

52:24

be able to play hockey or any contact sports

52:27

, but it will have chances to

52:29

play other sports . Growing

52:31

up in Canada and not being able to play hockey

52:33

was disappointing . Most

52:36

of my friends and cousins played and loved

52:38

it . From watching their

52:40

games I started to love hockey . The

52:43

Toronto Maple Leafs are my favourite

52:45

team . Despite not

52:47

being able to play hockey , I found joy

52:49

, happiness and a sense of novelty

52:51

in other sports . When

52:53

I was younger , in elementary school , getting

52:56

changed for gym class , other

52:58

kids would often ask me what's

53:00

all those marks on your chest ? Or

53:03

how come you have all those

53:05

marks on your chest ? I

53:07

told them I've got a heart condition

53:09

and all these scars are from the surgeries

53:12

that were done . After

53:14

explaining about the scars , they understood

53:16

and they would sometimes ask about my condition

53:18

. This happened again in

53:20

high school . I would get the same

53:23

questions and they would get the same answers

53:25

. Having this CHD has

53:27

its disadvantages , but

53:29

I'm proud of the person I am , even if

53:31

I'm a bit different from other people . I

53:34

started skating at five and figure

53:37

skated until I was 18 . It

53:39

wasn't hockey , but I was able

53:41

to skate on the ice in some capacity

53:43

. I became a strong

53:46

skater . Skating gave

53:48

me exercise to keep my heart strong

53:50

and healthy . I always came

53:52

off the ice exhausted , but in a good

53:54

way , as my coaches gave

53:56

me a good workout on the ice , especially

53:59

when I'd come from curling all day to my

54:01

skating lessons in the evenings . Another

54:04

sport I fell in love with at a young age was baseball

54:07

. I joined a local baseball

54:09

league with some friends when I was seven years

54:12

old and played for ten summers . One

54:14

of my best memories came on the baseball

54:17

diamond . As a kid I remember

54:19

one play like it was yesterday . I

54:22

stole home to tie the game at 5-5

54:24

. What an experience

54:27

that was . The game ended in

54:29

a tie , but it was the closest any

54:31

team had come to winning against the champions

54:33

, as they went undefeated that season . Playing

54:37

baseball for ten summers allowed me to

54:39

be normal . I was able to run

54:41

around the bases , get dirty

54:43

from sliding to make plays , and I

54:45

took part in activities off the field such

54:47

as go-karting and playing arcade

54:49

games . When I got

54:52

older , I would join my team at McDonald's

54:54

after winning a game . Fast

54:56

food wasn't the best for me with my condition

54:59

, and still isn't today , but

55:01

I'm able to treat myself once in a while

55:03

. I met amazing people

55:05

whom I became friends with , some

55:08

of whom I still keep in touch with today

55:10

. My friends and I stopped

55:12

playing off grass season in 2017

55:14

. Despite not being in a

55:16

league anymore , we get together occasionally

55:19

in the summer and play for fun , or

55:21

we go to the Toronto Blue Jays games

55:24

, as we are all huge fans . When

55:26

I started high school , I was nervous

55:29

. I was nervous about gym class

55:31

in grade 9 because I didn't know how the other

55:33

students would react and treat me when they found

55:35

out about my heart condition . As

55:38

it turned out , I had nothing to worry

55:40

about . The other students were great

55:43

and my teacher was amazing . They

55:45

treated me like a normal student . I

55:47

took gym class throughout high school to

55:49

stay active and healthy . Later

55:52

, in grade 9 , I heard about the curling

55:54

team at school . I had always

55:57

watched curling and wanted to try it . Curling

55:59

is a sport that requires a lot of strength

56:01

, especially when sleeping in the rock . I

56:04

didn't know how I would do with it , but

56:06

tried it anyway . I loved

56:08

it . I loved moving on the ice

56:11

, releasing the rock and seeing how the

56:13

rock curls on the ice . By

56:15

the time I was in grade 11 , I

56:17

was on the competitive team , taking part

56:19

in multiple tournaments during the school year

56:21

. Throughout the school year

56:23

I was playing in curling tournaments for

56:25

school . Multiple times during the year I

56:28

helped my school team make it too , ofsaa

56:32

twice . Ofsaa

56:34

is the Ontario Federation

56:36

of School Athletic Associations

56:39

. It's a provincial championship

56:41

in Canada . After the 2014-2015

56:45

season , where we went to OFSAA

56:47

, they awarded me the most

56:49

improved player award in boys curling

56:52

. At my school's athletic banquet

56:54

my coaches and team mates

56:56

all said way to go , mike , great

56:59

season , well deserved . I

57:02

will always remember the curling teams I

57:04

was a part of during high school . They

57:06

were a lot of fun . I'm glad I tried

57:08

curling in grade nine . Outside

57:11

of high school I curled at a club In

57:13

my last year . At the club my team won the

57:16

club's junior curling championship

57:18

. One player on

57:20

the opposing team was my good friend , josh

57:22

. It was a close game that

57:24

came down to the last shot . Luckily

57:27

, I had the last shot to go for the

57:29

win . It was the most difficult

57:31

shot I had ever had to make during my

57:33

time curling competitively . I

57:36

got into the hack , visualised

57:38

making the shot and took a deep

57:40

breath before I released the rock . As

57:43

soon as the rock got through the guards and was

57:45

going to hit the rock , it needed to hit to win the

57:47

game . I threw my arms in

57:49

the air , looked over at my good friend

57:51

, josh , and smiled . He knew

57:53

my team had won . He said

57:56

congrats , hillsy . That

57:58

was a heck of a shot in game . My

58:00

teammates were amazed that I had just

58:02

made that shot . They were all saying

58:05

way to go , mike , what a shot

58:07

. It was awesome to win against

58:09

Josh . We still talk about

58:11

that game today , even though it has been several

58:14

years since it happened . Through

58:16

sports I could feel and act like a normal

58:19

kid . Like most kids

58:21

, my baseball pants got dirty almost

58:23

every game . Thanks , mum , for

58:25

washing them every time . Most

58:28

of all , I had fun and made lifelong

58:30

friends in every sport I played . Thanks

58:33

to the team at Sick Kits Hospital , I've

58:36

been able to go to college and graduate with a

58:38

degree in sports management . Work

58:40

at a curling club during the winter , work

58:43

for Jays Care Foundation in the summer

58:45

. They are a charitable arm of my

58:47

favourite baseball team , the Toronto

58:49

Blue Jays . In

58:51

the future I plan to attend another college

58:54

for a degree in sport and event marketing

58:56

. I've been able to have a healthy

58:58

childhood and early adult life . I

59:01

wouldn't have had these significant memories

59:03

and opportunities in sports and outside

59:05

of sports , if it wasn't for the

59:07

hospital for sick children . Michael

59:11

was born in February 1998

59:13

in Ottobicoke , ontario

59:15

, canada . He has hyperplastic

59:18

left heart syndrome HLHS

59:21

. He has had three open

59:23

heart surgeries the Norwood Glen

59:25

and the Fong Tan . The

59:28

left side of his heart was underdeveloped

59:30

when he was born . He is now

59:32

living a healthy adult life . A huge sports

59:34

fan . Hockey and baseball

59:37

are his favourite sports . His

59:39

favourite teams are the Toronto Maple

59:41

Leagues and the Toronto Blue Jays .

59:45

Thanks for listening today . I hope you

59:47

found this program helpful . Please drop

59:49

us a like on our Facebook , youtube

59:51

, instagram channel to let us know

59:53

what you thought of this episode . And

59:55

remember my friends , you are not alone

59:58

.

59:59

Thank you again for joining us this week . We

1:00:01

hope you have become inspired and empowered

1:00:03

to become an advocate for the congenital heart

1:00:05

community . Our tartar with Anna , with

1:00:08

your host , anna Jaworski , can be heard

1:00:10

at any time , wherever you get your podcasts

1:00:12

. A new episode is released every Tuesday

1:00:14

from Noon Eastern Time .