0:46

I think one thing that's been interesting , that sort

0:48

of emerged from this , is there

0:50

are so many little things where people

0:53

talk to me and I go oh my gosh , that exact

0:55

thing happened to me , or I know exactly

0:58

what you're talking about .

1:03

Who is Lee Camping Carter ? What

1:05

are the heart dialogues ? Where

1:08

can someone access the heart dialogues

1:10

? Welcome to Heart to Heart

1:12

with Anna . I am Anna Jawarski and your

1:14

host , also a heart mom

1:16

to an adult who was born

1:18

with a single ventricle heart and is 28

1:21

years old . That's the reason I am the host

1:23

of your podcast . Today's episode

1:25

is called Lee Camping Carter and the Heart

1:27

Dialogues , and our guest is Lee

1:30

Camping Carter . Lee Camping Carter is

1:32

the founder and writer of the Heart Dialogues

1:34

, a free newsletter featuring

1:36

candid conversations and information

1:38

for people living with congenital

1:40

heart conditions . The link to

1:42

the newsletter will be in the show notes , which is the

1:45

description of the show . While

1:48

a few groups are doing critical work to raise awareness about

1:51

congenital heart conditions and

1:53

conduct medical research and increase

1:56

access to care , not many places exist for

1:58

people with congenital heart conditions

2:00

to share their experiences

2:03

and questions . at feeling less

2:05

weird , Lee started the

2:07

Heart Dialogues to be one of those places

2:09

, a space where we can explore

2:11

all the different ways that congenital heart conditions

2:14

affects our lives for better

2:16

and for worse . As

2:18

a professional journalist working at one

2:20

of the country's top newspapers , she

2:22

is drawing on her nearly 15 years of experience

2:25

as a reporter , editor and the

2:27

head of newsletters to bring CHD

2:29

related stories and information

2:31

to life . Lee is 38

2:34

years old and was born and raised in Toronto

2:36

, Canada . For more than 30

2:38

years she received cardiology care in

2:40

a healthcare system very different from

2:43

the one in the United States . She

2:45

moved to Brooklyn about 15 years ago

2:47

and about six years ago transferred

2:49

her care to New York . She's

2:51

experienced two different approaches to

2:53

cardiology but , unlike so many CHD

2:56

kids , she has never fallen

2:58

out of care , which I find remarkable

3:00

. Welcome to Heart to Heart with Anna

3:03

Lee Camping Carter .

3:05

Yeah , thanks so much for having me . I'm excited to be here .

3:08

I'm excited to talk to you , lee . Not

3:10

all of my guests know about your heart condition

3:12

, so can you tell

3:14

us a little bit more about your cardiac condition

3:17

and whether or not you've had surgery for it ?

3:20

Yeah , so I was born with a

3:22

complex heart defect called tricuspid

3:25

atresia , which is a

3:27

single ventricle defect where basically

3:30

the tricuspid valve doesn't

3:33

form a single ventricle correctly And

3:35

that's the valve on the right side of the heart which

3:38

we're not upper and lower chambers . So

3:41

I was diagnosed shortly

3:43

after birth and I had

3:45

a shunt when I was about nine months old

3:47

, another shunt when I was two years

3:49

old And then I had

3:51

the fontan when I was almost four in 1988

3:54

. And then I had a corrective

3:57

plastic surgery for one of my scars when

3:59

I was eight years old . And

4:01

since then there's been a couple

4:03

of small things here and there , but no other

4:06

operation , so no other

4:08

open heart procedures . Yeah

4:10

, just the one open heart , just the fontan .

4:13

Oh , my goodness , but that was so much . Oh

4:15

, so your shunts were not done open heart

4:17

Correct , yeah

4:19

, oh wow . I'm just curious because

4:22

I've seen people before who have a scar

4:24

under their back of their shoulder blade , where sometimes

4:27

they've had surgeries done that way , and

4:29

of course there's a midline scar that some people

4:31

have . How did they do the

4:33

shunt ? Was that actually in a cath lab ?

4:36

No , it was a surgery

4:38

on my right side . So yes , I have one

4:40

of those scars on my back and side

4:43

.

4:43

Okay , wow , i'm so impressed

4:45

that you've gone through all of this medical

4:47

trauma because , let's face it , when you put

4:49

your body through all of those different

4:52

procedures , it's medical trauma . And

4:54

yet here you are trying to normalize

4:57

things for other people who have been through

4:59

the same trauma that you have . So kudos

5:02

to you . I have

5:04

really enjoyed looking at the

5:06

newsletters that you put out already

5:08

. I read from top to

5:10

bottom the one with

5:12

Tracy , who was on my

5:15

show before . I really enjoyed that And I

5:17

learned new things , even though she's been on my show twice

5:19

, so that was really cool . I

5:21

found it interesting that you've received care both

5:23

in Toronto and in the United States

5:25

, so tell me some of the differences

5:28

that you noticed in care as

5:30

an adult with a cardiac condition , first

5:32

in Canada and then in the US .

5:35

I was lucky enough to grow up

5:37

in Toronto , which is a big city and

5:40

has lots of really great medical care

5:42

and in fact has one of the world's best

5:44

centers for pediatric cardiology . So

5:47

I think there's a couple of big differences . I

5:49

had my care in Toronto until

5:52

I guess what six years ago , when I

5:54

transferred it to New York , which

5:56

is also a big city but also really

5:58

good medical care . So

6:01

the care was top-match in both places . And

6:04

this is , of course , only my own personal experience . But

6:07

one big thing of course that's different is that we have

6:10

a universal health care . In Canada . We never paid

6:12

a bill . There

6:14

was no in-network or out-of-network , there

6:17

was no paperwork or bureaucracy . It

6:19

was really just you go to the hospital

6:21

and you get care , and obviously

6:24

that was an adjustment . Coming to New York and

6:27

realizing like , oh , this

6:29

is like a part-time job . I

6:32

think , beyond that , what I have experienced and this is certainly

6:35

not necessarily the case for everyone , but I think there's

6:38

a bit of a different philosophy So for

6:41

my care in Toronto , i

6:43

think the approach was always let's

6:45

not do anything if we don't have to . So

6:48

if you don't have to take this medication , we won't give this

6:52

to you If we don't have to do this procedure

6:54

yet , let's not quite do it , let's hold on

6:56

. And then when I came to New York

6:58

, the philosophy was the opposite , where

7:00

if we have a medication , let's give

7:03

it to you . If we have this procedure

7:05

, let's do it as soon as possible , and

7:08

I think there's probably pros and cons to

7:10

both approaches , but I think that was an adjustment .

7:13

Much more medicalized here , being in New

7:15

York . Yeah , i'm sure there was a huge

7:17

adjustment for you . So did they ask

7:20

you , or tell you , that they wanted to put you on new

7:23

medicine that you hadn't been on before ?

7:26

I have one of going on several

7:29

medications , partly because

7:31

of health issues that have cropped

7:33

up in the last six years unrelated

7:36

to being in New York . But

7:38

yeah , but I would say , like my cardiologist

7:40

definitely has an attitude

7:42

where if there's some

7:44

solid research that shows , hey

7:46

, this might help , it's definitely

7:49

let's get you on this , let's try this . Or

7:51

if there's a procedure that , hey

7:54

, we could put it off for a year or

7:56

we could do it now , the attitude

7:58

is much more let's do it now .

8:00

Yeah , i find

8:02

that fascinating that there are those different philosophies

8:05

and I wonder if there have been any studies

8:07

, because it seems like there are always studies on everything

8:09

, but I've never looked for this . I wonder

8:11

if there are any studies that compare how

8:14

adults

8:17

in the CHC community

8:19

do when they

8:22

have a more laissez-faire attitude

8:24

versus a more aggressive

8:26

attitude . And the

8:28

problem is , every human is

8:30

so different that it's really hard

8:32

to compare . I don't even know if you really could

8:35

do a good comparison , unless

8:37

you just see certain across

8:40

the board . Oh , this one population

8:42

. They tend to have more congestive

8:45

heart failure or something like that . I

8:47

don't know . I don't even know exactly what

8:49

you would look for .

8:50

Yeah , I think it's also hard to say exactly

8:53

what better would mean . Like I really

8:55

appreciated when I was in my

8:57

teens or 20s that

9:00

my cardiologist . he was always talking

9:02

should she go on blood thinner ? should she go on blood

9:04

thinners ? And for me I

9:06

never wanted to , because I never wanted

9:08

to feel like a patient . I didn't want to feel sick

9:10

, i didn't want to have to take medication .

9:13

That is how my heart warrior was Exactly

9:15

. My kid fell out of care And I

9:17

wonder if maybe there had been

9:19

more laissez faire attitude , maybe

9:21

she wouldn't have fallen out of care . But

9:24

she got sick and tired of all the medicine

9:26

that she had to take and all the tests and

9:28

being seen by cardiology

9:30

every six months , even when she felt

9:32

well , so she just quit going

9:34

when she didn't have mom dragging her out there

9:37

. I wonder if maybe she

9:39

had been only seen once

9:41

a year instead of twice a year And they hadn't

9:43

been running quite as many tests and they didn't

9:46

demand her to take quite

9:48

as many medications , if maybe she would have

9:50

been more compliant ? I don't

9:52

know , she's still my kid , so

9:54

there's no teller .

9:56

I think it's hard to say And I don't know if I would use

9:58

the word laissez faire . I think it was

10:00

really top quality care

10:02

. I did have a lot of tests .

10:04

Oh , i don't mean any disrespect , i don't mean any disrespect

10:06

, Yeah . I just mean more laid back

10:08

. I assume laissez faire was more laid

10:10

back , not as opposed

10:13

to a more aggressive approach

10:15

, which I feel like many

10:17

of the hospitals here in the US are much

10:19

more aggressive , and

10:21

that has a really negative connotation

10:24

. I don't mean that in a negative way either

10:26

. I just mean that they're more

10:28

apt to try

10:30

new things . But once you're an adult , you

10:33

could do what my kid did And you can

10:35

say no , like my child's cardiologist

10:38

decided that she

10:40

needed a pacemaker , and

10:42

my daughter did

10:44

not believe she needed a pacemaker . She

10:47

did her own research and found

10:49

out that one

10:51

of the new drugs that they put her on , one

10:54

of the side effects , could be arrhythmias

10:56

, and so

10:59

she met with an electrophysiologist

11:02

and said I don't think I need a pacemaker

11:05

until we determine whether or not this new drug

11:07

I'm on is what's actually

11:09

causing the problem . And thankfully the

11:11

electrophysiologist agreed with her and

11:13

come to find out . Yes , indeed , it was

11:15

that drug . It was causing the arrhythmias , and

11:18

now she doesn't have those arrhythmias

11:20

And she doesn't have a pacemaker . So

11:23

I think it's really important to be able to be assertive

11:25

for yourself and to do your own research , and

11:29

that's one of the things I like about the heart dialogues

11:31

is that you're talking to people about their

11:33

own specific conditions

11:35

and their own specific journey , and you were

11:37

really detailed . With the one

11:40

newsletter that I read , you

11:42

really went into a lot of detail

11:44

with Tracy And asked

11:47

her a lot of questions And because she

11:49

felt really safe with you , lee , she really

11:51

opened up to you and shared

11:54

a lot of information . I think one

11:56

of the problems for her heart warriors is it's

11:58

hard to find anyone else just like you . It's

12:01

hard to find anyone else who's gone through exactly

12:03

what you've gone through , and

12:06

even with these dialogues , tracy

12:08

didn't go through exactly the same thing you did , but

12:11

just by having that conversation it

12:13

gives you a chance to hear somebody else's story

12:15

And then , if you start to experience

12:18

something that you've read

12:20

somebody else has experienced

12:22

, maybe you know some of the possible

12:24

consequences or at least some of

12:26

the jargon and terminology to use

12:28

when you talk to your doctor .

12:30

Yeah , i've been really lucky that

12:32

when it's been really open and

12:35

candid with me , and I feel

12:37

very lucky to the people that I've interviewed

12:39

for being that way . I think

12:41

one thing that's been interesting , that sort of emerged

12:43

from this , is there are so

12:45

many little things where people

12:48

talk to me and I go , oh my gosh , that exact

12:50

thing happened to me Or I know exactly

12:53

what you're talking about And I've never

12:55

had anyone in my life where

12:57

that's been true . I think it's also

12:59

interesting that there's as much

13:01

where , oh , that experience is very

13:04

different from mine . People who've had

13:06

more interventions or fewer interventions

13:09

. We call this congenital

13:11

heart disease or congenital heart conditions

13:13

, but that encompasses such a

13:15

wide array of defects

13:17

and experiences and severity

13:19

and all that kind of stuff . Yeah , it's been equally

13:22

rewarding to hear the stuff that feels really

13:24

familiar and the stuff that feels really different

13:26

. ["song of the Heart"] .

13:33

And Tonight Forever by the Baby Blue

13:35

Sound Collective . I think what I love

13:37

so much about this CD is

13:39

that some of the songs were inspired

13:42

by the patients .

13:44

Many listeners will understand many

13:46

of the different songs and what they've been inspired by

13:48

. Our new album will be available

13:51

on iTunes , Amazoncom

13:53

, Spotify .

13:54

I love the fact that the proceeds from

13:56

this CD are actually going to

13:58

help those with congenital heart defects

14:00

.

14:00

Enjoy the music .

14:01

Home Tonight Forever . ["song

14:05

of the Heart"]

14:08

. This content is

14:10

not intended to be a substitute for

14:12

professional medical advice , diagnosis

14:14

or treatment . The opinions expressed

14:16

in the podcast are not those of

14:19

Heart's Unite the Globe , but of the hosts

14:21

and guests , and are intended to spark

14:23

discussion about issues pertaining to congenital

14:25

heart disease or bereavement .

14:28

["song of the

14:30

Heart"] . You are listening to Heart to Heart with Anna

14:32

. If you have a question or comment

14:34

that you would like to address on our show , please

14:36

send an email to Anna Jaworski at Anna

14:39

at hearttoheartwithannacom

14:41

. That's Anna at hearttoheartwithannacom

14:44

. Now back

14:46

to Heart to Heart with Anna .

14:53

Lee , before the break we were talking about your

14:55

cardiac condition and it

14:58

sounds like you've been very careful with your

15:00

care because you've never fallen

15:02

out of care , But I'm sure

15:04

that doesn't mean you haven't struggled , because you just told

15:07

me that you've had four procedures

15:09

. That's a lot of procedures to have to

15:11

undergo , plus additional procedures

15:13

that were not cardiac . Tell me why you started

15:15

the heart dialogues .

15:17

I think there's a couple different things . So

15:19

I really started getting more involved with

15:21

the congenital heart community

15:24

probably two or three years ago

15:26

, and I think there's some really

15:28

fantastic groups out there that

15:30

are raising awareness

15:32

, that are doing medical research , that are

15:34

doing advocacy work in DC . Every

15:37

time I would be in a webinar

15:39

or a conference or a fundraising event

15:41

, people would talk about what we really

15:44

want as community . I found

15:46

also that a lot of the time the

15:49

conversations that people would have would

15:51

just really be focused

15:53

a lot on the medical staff . So when people introduced

15:56

themselves , it was hi , i'm

15:58

Lee and I have tricuspid atresia

16:00

. These are the surgeries I had And

16:02

that's how we would relate to each other . And

16:05

I felt , of course , all of that is

16:07

very important , all stuff we need to

16:09

talk about , but also there are

16:11

so many other things that are involved with having

16:13

congenital heart

16:15

condition and even just having an illness

16:17

since birth . There's things like having

16:20

scars , how to talk to your boss

16:22

about having a bunch of doctor's appointments

16:24

, how your parents deal with

16:26

your care . For some people they're very involved

16:29

, for some people they're not . So it just

16:31

seemed like there was a lot of other

16:33

stuff out there that we could be talking

16:35

about . And then I think for me I'm a journalist

16:38

, i've been a journalist for many years and

16:40

I've worked in newsletters in my job

16:42

for many years And I really

16:44

gravitated toward that medium . I

16:47

subscribed to a lot of newsletters I love newsletters

16:49

And it felt like there wasn't really

16:51

something out there that was a newsletter where

16:54

you didn't necessarily have to be

16:56

part of a conversation or

16:58

log into Facebook , but there was something

17:00

that could come to your inbox a couple

17:02

of times a month that you could read at

17:05

your leisure digest and think

17:07

about . So I felt like there was an opening

17:09

there for me to bring my skills for my work

17:11

, life and my passion for this

17:13

community or this subject

17:15

and kind of put them together for the

17:17

heart dialogues .

17:19

I love it . I love it And I think you're absolutely

17:21

right . And to be totally honest with you

17:23

, Lee , even if there were another

17:25

newsletter out there , there's room for two .

17:27

There's room for three or four or five .

17:29

Exactly because , Exactly there

17:31

are so many stories that need to be told

17:34

and you can't tell everything

17:36

in one newsletter . We have multiple podcasts

17:38

now , which is so exciting to me that

17:40

there are multiple opportunities

17:42

for people to go on the air

17:45

and do this audibly . Not everybody

17:47

likes to listen to things

17:49

. Some people are more visual learners or they

17:51

prefer to look on

17:53

their phone and read while they're on the train or

17:55

something like that , and so that's where the newsletter

17:58

comes in really handy . So

18:00

, as I mentioned earlier , i

18:02

really enjoyed your issue with Tracy

18:05

Levecke because she had been on my

18:07

show before and I just find

18:09

her fascinating . I

18:11

was so impressed with how in

18:13

depth your interview

18:15

with her was , because I think that would

18:17

have taken longer

18:19

than the 30 minutes to an hour I

18:22

usually spend with people

18:24

putting together my podcast . So

18:26

can you take us through the process that you

18:28

go through to create your newsletter ?

18:31

Yeah , so these interviews , at

18:33

least so far , have all been phone conversations

18:36

. We've talked for a

18:39

range from 40

18:41

minutes to 60 plus

18:44

minutes and

18:46

I usually go in . I try and

18:48

do as much research on the person as I can

18:50

. I do the cyber-stalking

18:52

of things not in a creepy way Nice

18:54

to talk about , they're creepy way . I

18:57

want to go in as prepared as I can be . I

18:59

usually have the general list of questions

19:02

that I would like

19:04

to get into , some of which are unique

19:06

to the person , some of which are things that I ask

19:08

everyone . But we also let the

19:10

conversations just go where they will

19:13

and I think every time I've been surprised

19:15

by where they go , and

19:17

I also try and make sure

19:19

I ask some very personal

19:21

questions .

19:22

You did even about her childhood

19:25

And I thought that was really telling

19:27

. I really enjoyed reading

19:29

that because that's not something that

19:31

normally gets discussed . You did a really

19:33

good job with that .

19:35

That makes me very happy to hear , but

19:37

I also practice every interview by telling

19:39

people that I do have personal questions , but

19:41

you don't have to answer them And if

19:44

it's uncomfortable you don't have to go there . I do

19:47

want people to feel really safe and protected

19:49

. I'm not out to make them look silly

19:52

or anything like that . I think

19:54

it's really just about having an honest conversation

19:56

and talking about all the good things and all the bad

19:58

things and getting as deep as you

20:01

can possibly go .

20:02

Yeah , i think you do an excellent job . I can

20:04

definitely see that you've had training

20:07

in that area , but I also think , just

20:09

from what I've read and the

20:11

limited conversations I've had

20:14

with you already , you're a very

20:16

empathetic person And you

20:18

come across as somebody who's very trustworthy

20:21

and that you care about how

20:23

other people feel .

20:27

Good . I think that's good for a reporter . I'm really about

20:30

to think about one Also . It's

20:33

true , I do really care . I

20:35

do care about what I'm talking to

20:37

.

20:37

So you feel like

20:39

a very authentic person and

20:42

that you're in touch with the deeper

20:44

part of yourself . I need to say this

20:46

, but I feel like a lot of people are superficial

20:48

and they're not really

20:50

looking deep within , they're not introspective

20:53

. You strike me as a kind of person who's

20:55

much more introspective and you're

20:57

interested in other people's experiences

21:00

And you don't mind listening

21:02

and taking in what their contrasting

21:05

experiences have been . So I just

21:08

really find it fascinating And I think

21:10

you're the right person for the job . I think you

21:12

came up with the right medium

21:14

for you and you do an excellent job . Thank

21:16

you so much . You're very welcome , my

21:18

dear .

21:19

No one can see vids , but I'm blushing .

21:24

I can see and you're just adorable . So

21:27

tell me how you decide who you're

21:29

going to feature in your newslet because

21:31

, as I said , there are a lot of people out there

21:33

and I find it challenging

21:36

with me , even with the podcast Who

21:39

am I going to select ? A lot of times

21:41

, i'm in a lot of different groups on Facebook and people will

21:44

start talking about something and I'll think , oh my gosh

21:47

, i haven't covered that on my podcast yet

21:49

and I'll reach out to one

21:51

of those people to see if they would like to come on

21:53

this show and talk about

21:55

it . How do you choose who you're going to

21:57

feature ?

21:59

I had a few interviews already

22:01

in the bag before I launched

22:03

and I reached out to people

22:05

who I knew or knew of

22:07

who I thought would be open

22:10

to sharing their stories . That was initially

22:13

the criteria , because I wanted

22:15

to find people who are comfortable talking

22:18

about this . Since I've launched , i've actually

22:20

been approached by a lot of people

22:22

who've come to me , so I thought this would be the

22:24

most difficult part of the newsletter . It's finding

22:27

people to talk to and , in fact , within

22:29

the easiest part , people are coming to me . The way

22:31

I would like for it to take

22:33

shape is , i think , a lot about

22:36

having a big diversity of

22:38

voiceless , gender or racial

22:40

, geographic , of course , but also

22:42

different heart conditions , different

22:45

ages and also

22:47

different levels of intervention

22:49

. Some people have had really

22:52

many serious medical interventions

22:55

and some people really haven't . It was something

22:57

that happened when they were a kid , and

23:01

it's fine now Isn't that lovely

23:03

.

23:03

There are some people who have only had one surgery

23:05

and that's all they needed . I

23:07

love it when I have people who come on my program

23:10

and they talk candidly , like

23:12

you have , about yeah , i had multiple procedures

23:14

, some were closed heart , some were open heart

23:16

, and you're perfectly fine with

23:18

saying that , and I can empathize

23:21

because my heart warrior has had three

23:23

surgeries herself . But then

23:25

it is lovely sometimes to get somebody who says

23:27

, oh , yeah , i'm considered a one and done

23:29

. I think , wow , thank goodness

23:31

there are some people out there like that and not everybody

23:34

has to have so many procedures

23:37

because it's hard

23:39

psychologically , emotionally , physically

23:41

. It's so hard to go through all of

23:43

that . I'm glad to hear you're looking for

23:46

diversity , different types

23:49

of heart effects , different experiences

23:52

. I think that's really wonderful . And different

23:54

ages That's nice too , because

23:56

, as we know , this happens to

23:58

people of all ages and so many

24:01

of you are living to be adults

24:03

and even older adults , which to

24:05

me is really exciting . I love having somebody

24:08

on my show who's in their 50s or in their

24:10

60s . That gives me so much hope for my

24:12

heart warrior .

24:15

And I think the medical care is just so

24:17

different . Even a difference of

24:19

10 years . I talked to someone who

24:21

is 10 years younger than me and

24:23

their experiences are different from mine . Oh

24:25

, really .

24:26

And now all these people who are

24:28

living in the age of COVID and

24:31

that was their first experience

24:33

with dealing with the heart world

24:35

that's got to be so much harder

24:38

. At least , when my heart

24:40

warrior , and when you were having to

24:42

undergo your first surgeries , both

24:44

your mommy and your daddy could be there with you

24:46

, and during the highest

24:48

part of COVID that wasn't necessarily said

24:50

they were only allowed to have one person be

24:53

back there with them . I think that's got to be a lot

24:55

harder , don't you ? Yeah

24:57

, yeah , did you have both your

24:59

parents with you when you had your surgery

25:01

? I think it was mostly my

25:03

mom , yeah , Yes that

25:05

task usually does fall mostly to

25:07

the moms , but I know that my husband

25:09

was there as much as he could be . Now

25:12

it was his insurance that we use

25:14

here in the States . that's really important . So

25:16

he had a certain amount

25:19

of time that he could take away from work . but

25:21

he was afraid to take too much because

25:24

we couldn't afford to lose our

25:26

insurance And unfortunately

25:28

we were at a hospital three hours away from where we lived

25:30

So he couldn't just come after

25:32

work and then make it back to work the

25:35

next day .

25:37

Anna Jaworski has written several books to

25:39

empower the congenital heart defect

25:41

, or CHD , community . These

25:43

books can be found at amazoncom

25:45

or at her website , wwwbabyheartspresscom

25:50

. Her best seller is The Heart

25:52

of a Mother , an anthology of stories

25:54

written by women for women in the CHD

25:56

community , and as other books , my

25:59

Brother Needs an Operation , the Heart of

26:01

a Father and Hypoplastic Left Heart

26:03

Syndrome . A handbook for parents will

26:05

help you understand that you are not

26:07

alone . Visit babyheartspresscom

26:10

to find out more .

26:19

Heart to Heart with Anna is a presentation of Hearts

26:21

Unite the Globe and is part of the Hugg Podcast

26:24

Network . Hearts Unite the Globe

26:26

is a non-profit organization devoted to

26:28

providing resources to the congenital heart

26:30

defect community to uplift , empower

26:32

and enrich the lives of our community members

26:35

. If you would like access to free

26:37

resources pertaining to the CHD community

26:39

, please visit our website at

26:41

wwwcongenitalheartdefectscom

26:44

for information about CHD , the

26:46

hospitals that treat children with CHD , summer

26:49

camps for CHD survivors and much

26:51

, much more .

26:54

So before the break we were learning about

26:57

the heart dialogues with

26:59

Lee And in this segment I'm going

27:01

to talk to Lee about her plans

27:03

for the future . So , of course

27:06

, with your great writing background and the excellent

27:08

job you've done with your newsletter already

27:10

, i'm wondering do you think the heart dialogues

27:13

might turn into a book ?

27:15

I'm certainly open to that . I'm not

27:17

quite looking that far ahead right this

27:20

moment , but I am thinking of the

27:22

future of the newsletter . I think there's a whole

27:24

bunch of essay ideas that I have

27:26

that I'd like to roll out . I'm

27:28

publishing every other week

27:31

currently , but I would love to

27:33

run once a week . So

27:35

that's the next big step .

27:37

It is a big step Yeah .

27:39

I think there's other different kinds of posts

27:41

that I'd like to do . I'd like to

27:43

eventually include some links , roundups

27:46

and recommendations , and

27:49

I just made a bonus just this week

27:51

with comments from readers

27:53

, so I'd like to do more of that

27:55

.

27:55

Yeah .

27:56

The next step is trying some of these different formats

27:59

, getting to one for the week and

28:01

we'll see how it goes from there .

28:04

Do you think you might end up getting a

28:06

co-editor or somebody to

28:08

help you , because this is a lot of work

28:10

and you have a full-time job ?

28:12

Yeah , I know

28:14

That's something I thought about . I

28:16

guess I'd have to see how it goes .

28:19

Yeah , before we go . I

28:21

know a lot of people who are listening love

28:24

to write as well . I'm

28:26

wondering if you have any advice for

28:28

aspiring writers who were

28:30

born with a congenital heart condition ?

28:32

Yeah , I

28:34

give the same advice for anyone

28:37

who wants to write and I'm

28:39

certainly not an expert

28:41

. I've been doing journalism

28:43

for a long time . I've been writing

28:46

since I was a kid . I think there's

28:48

lots of great resources out there . But

28:50

yeah , I would say this sounds silly , but

28:52

I think the first thing to do is actually write

28:55

.

28:56

It doesn't sound silly when you're a writer , because

28:59

writers are the worst people procrastinating

29:02

about writing .

29:03

Yeah , i think it's really hard for you have

29:05

a job , if you have kids , if you have all

29:08

the to-do lists . That goes on and on . I

29:10

think it's really easy to push writing off

29:12

. I think it's also

29:14

easy to get intimidated and think that

29:17

I have to write something that's beautiful

29:19

, i have to write something that gets published , i

29:21

have to write something that is a certain

29:23

length , or I have to spend four hours

29:25

at a time doing it . I would say none

29:27

of that is true . I would just carve

29:30

out 20 minutes , if

29:32

you can , and just sit write

29:34

. Don't put any restrictions

29:36

on yourself , don't put any pressure on yourself , just

29:38

write . Writing is

29:40

a big part of writing . And also

29:43

, i would say , read a lot , find

29:45

what you like to read . When you encounter

29:47

something that you read that really moves you or

29:49

that you really connect with , i'd say , try

29:51

and figure out why it does that

29:53

, try and pick it apart . Yeah , reading

29:56

, i think , is a big part of writing .

29:59

I think so too . As

30:01

a writer myself , i find

30:03

that the first time I read a

30:05

book I'm just absorbing

30:08

it . But then , like

30:10

you said , if I find that it really moves

30:12

me or I really am touched

30:14

and I really like it and I find

30:16

my mind going back to things that

30:18

I had read in that book , i'll read it

30:20

the second time to do what you said , to be more

30:23

analytical . It's hard for me to

30:25

analyze the very first time through because I'm

30:27

so into it and I just

30:29

gobble it up . I

30:31

think that's excellent advice and you're right , and

30:33

that advice would be perfect

30:36

for somebody , whether they have a cardiac condition or

30:38

not . It's for anybody who wants to

30:40

be a writer . I think it's

30:42

brave of you to move to the United

30:44

States after living in Canada as

30:46

a child . Moving to a different country

30:49

, especially one where the healthcare

30:51

situation is so radically

30:53

different from the one that you grew up

30:55

with , it's got to be a little

30:57

bit scary . So what advice would

30:59

you give to other adults who

31:01

are born with cardiac conditions , who

31:04

want to experience living in a different

31:06

country ?

31:08

Yeah , i think , ironically , actually moving

31:10

to New York was much less

31:13

scary than a couple

31:15

of the moves I'd had before that . So

31:18

when I moved to New York , first of all it's

31:20

very close to Toronto , so a very quick

31:23

flight . My mom lived in Massachusetts

31:25

at the time so I was actually moving

31:27

closer to her And

31:29

I had gone to university

31:32

in Vancouver , canada , which is way on the

31:34

West Coast , which is a five

31:36

hour flight across multiple time

31:38

zones . So New

31:41

York was actually closer and easier

31:43

to be in touch with my family . And

31:46

then , immediately before I moved to New York

31:48

, i did a four month packing

31:50

trip solo through India

31:52

And through India

31:54

.

31:55

Yeah , whoa , i

31:57

was not expecting you to say India . Okay

32:00

, what drove you to go to

32:02

India Backpacking across

32:04

India ?

32:05

Wow Yeah . So I

32:07

think my mom was like okay , i can

32:09

deal with New York , but there's

32:12

like a couple of things that I want to talk

32:14

about with my cardiac care and some of these

32:16

travels . I think before I went I

32:18

talked to my cardiologist , i cleared it

32:20

with him . I had his contact information

32:23

. He knew I was going , so

32:25

that was a big part of it .

32:27

Good , all of that's

32:29

really smart , yeah .

32:31

And then I think the other thing was that I've always

32:33

had this feeling that at

32:35

some point it might get to a

32:37

situation where I can't do things like

32:40

that . I don't know where my whole is going

32:42

to go , and the reality is

32:44

that everyone has that I was just

32:46

going to say my husband and I are entering

32:48

our 60s all the 60

32:50

this year And we've been saying , okay

32:53

, where do we really want to go , that

32:55

we know we have to be in good enough

32:57

health to do it , that we need to do it now

32:59

, before we get into our 70s

33:01

It will be a lot harder , yeah

33:04

, and I think that people

33:06

who were born with these complex

33:09

conditions , both

33:11

for good and for ill , have a

33:13

real sense that our

33:16

lives are finite and

33:18

our health is finite , yeah , and

33:21

so for me it was more important

33:23

even if something did happen that

33:25

I got the opportunity to back

33:27

panic through India , and I got the opportunity

33:29

to go to grad school and study journalism

33:32

in New York City . These things

33:34

have changed my life , and I

33:36

know that there was some risk involved

33:39

, but for me it was worth the risk .

33:42

I'm so impressed that you

33:45

look at it that way , and I think

33:47

that's the perfect way anybody should

33:49

look at their lives . And honestly , lee

33:52

, i think when I was

33:54

granted hope as

33:56

my child , that God gave me

33:58

hope and a mission , and that mission

34:01

was to help other families

34:03

like mine . And I think I also

34:05

got a tremendous gift , and

34:08

that gift was the knowledge that tomorrow

34:10

isn't guaranteed and that

34:12

I needed to appreciate every day And I already

34:14

did because I was one of those people

34:16

who had a really hard time getting pregnant . So

34:19

it took me five years before I had my

34:21

first child , and three

34:23

of those years were

34:25

fraught with a lot of concern . What

34:27

was wrong with me that I couldn't get pregnant ? I

34:30

think maybe it was God's plan

34:32

for me to wait for a while , and

34:34

I think I needed the maturity that

34:37

comes with being a little bit older

34:39

to navigate the complexities

34:41

of having a child with special

34:43

needs . My first child luckily didn't . His

34:46

own special character taught

34:49

me about how to be a mother to

34:51

a very challenging child , but not Medically

34:54

challenging . And then , when I had

34:56

hope , being 31

34:58

was a good thing because I knew how

35:00

to do research . I knew how to be an advocate for

35:02

my child . I did have some of

35:04

that extra wisdom that comes

35:07

from being a little bit older , and

35:09

I'm glad I wasn't 20 or 21

35:11

when I had a child like that . I think it would have

35:13

been tremendously more difficult

35:16

. But just learning How

35:19

precious each and every day is and not taking

35:21

these for granted and saying to yourself

35:23

okay , this is an experience I would like

35:25

to have . It comes with some risk . Let

35:27

me minimize that risk . You called

35:29

your cardiologist , you did your research

35:31

, you knew where you could go for help

35:34

if you needed to . That's just brilliant

35:36

. I wish everybody would do something

35:38

like that , because every

35:40

trip that you take comes with some risk

35:42

, whether you have a medical condition or

35:44

not , and it just makes sense to

35:46

know where can I go , especially if you're going

35:48

in a place where you don't speak the language . And

35:51

the thing about India is What

35:53

are there ? 42 different states

35:56

and just as many languages .

35:59

Yeah , it helps that English is an

36:01

official language . But , yeah

36:03

, absolutely every state It's very different

36:05

and different languages .

36:06

Yeah , now did you have a friend in India

36:09

, or had you read something

36:11

or seen something that made you decide This

36:14

is where I want to go .

36:16

Yeah , i think I had just always been interested

36:19

in the Culture and

36:21

the food . So in Canada when I

36:23

was born , there were these things called baby bonuses

36:25

, where the government Would give you

36:28

like a few hundred dollars for every baby that you had

36:30

, and my dad just put it in like

36:32

a high interest savings account

36:34

until I was 21 . And so

36:37

I Graduates from university

36:39

and had a few thousand dollars in

36:42

this account and I

36:44

knew I wanted to take some time off before

36:46

grad school and I'd always wanted

36:48

to go to India . So I

36:50

was like , alright , this is what I'm using

36:53

the money for , i'm gonna go Wow . And

36:55

I spent the first month in a

36:57

rural development project north

37:00

of Delhi . So I met people

37:02

as part of that project and Pray

37:05

the time I traveled with some of them week

37:07

Chris Cross path . Part of the time I

37:09

was alone . Part of the time I met other people

37:12

on my travels . Yeah

37:14

, there was a whole community of backpackers

37:16

, so it didn't feel Totally

37:18

alone . But I did not fly with

37:20

a friend or plan the trip with a friend

37:22

.

37:23

Wow . And how did you feel

37:25

when you said , hey , i'm gonna go to India

37:27

, for I . Don't

37:29

know how long did you say you did that ? a couple like

37:31

four and a half months Yeah , it's

37:34

a long time . How

37:37

did your mom react ?

37:39

I think in her heart of heart She was

37:41

probably really freaked out , but I think she also

37:43

knew that I was gonna do it anyway And

37:45

I think she knew that it would enrich

37:47

my life . What ?

37:49

you did , sure I hope

37:51

wanted to do an internship in Germany

37:53

and I

37:55

felt by the time she was of

37:57

the age to do that , which was also

38:00

when she was in college , i felt

38:02

, if there was anyone who deserved to spread her

38:04

wings , of why it was hope after everything

38:06

she had been through . And We did

38:08

the same thing . We found out about the

38:10

doctors . Now she actually went and stayed with

38:12

some friends of mine who

38:15

the mother and father were her

38:17

parents , so I knew that they knew

38:20

the doctors , they knew the hospital . It

38:22

wouldn't freak them out . They knew the lingo

38:24

, so that made me feel a little bit more comfortable

38:26

. But I had a lot of my friends who had

38:29

perfectly heart-healthy children say

38:31

to me How can you let her go all

38:33

the way to Germany without you

38:35

? and I said , no , she can do

38:37

this . When the kids were young We did a lot

38:39

of traveling , so I knew she knew how

38:41

to negotiate being in an airport

38:43

and She had been on every kind

38:45

of public transportation you can imagine , including

38:48

gondolas in Italy . So I knew she

38:50

would be able to figure it out . Like you said

38:52

, i think it was an enriching experience

38:54

for her and By the time

38:56

you're in college . You don't want your parents

38:58

tagging along . You want to spread your wings

39:01

and Good , yeah , yeah

39:03

.

39:03

Yeah , and I think my family was the

39:05

same way . We traveled a lot . My older

39:07

sister Looked in Singapore

39:10

for a few years and in San Francisco

39:12

My mom had moved to Massachusetts

39:14

. I Did school

39:17

about as far away as you can get in

39:19

Canada , so there's some precedent

39:21

for it .

39:22

Wow , this has been so much fun

39:24

. I had no idea we were gonna go there about travel

39:26

. I love to travel , but I have never

39:28

been to India . It's too bad that you

39:31

don't work in a job where you

39:33

get to travel and right . Have you ever

39:35

considered getting a job as a travel

39:37

writer ?

39:39

Not was a travel writer . I have

39:41

had a job before where I did get

39:43

to travel from time to time

39:45

for work , so yeah , that was a

39:47

lot of fun .

39:48

Yeah well , i Thoroughly

39:51

enjoy getting to know you a little better and

39:53

getting to know about the heart dialogues . Let's

39:56

tell everybody how they can find it , and then I'll include

39:58

it in the show notes too , lee great

40:00

.

40:00

Yeah , so you can sign up at the

40:03

heart dialogues dot sub stack

40:05

comm and It's

40:07

free . It comes every other week and

40:10

again , the heart dialogues dot sub stack

40:12

comm .

40:13

So the heart dialogues . Easy

40:16

to subscribe you go to the page , box

40:19

pops up super easy and

40:21

you'll get all kinds of wonderful content . It's

40:23

totally worth it . I completely

40:26

endorse it And I'm hoping

40:28

that you'll want to be part of the hug podcast

40:30

network . We have a media

40:32

channel and we don't have any newsletters

40:34

up there , so I would love to feature your

40:36

newsletter on our media channel . Oh Yeah

40:40

, sure , then people can go

40:42

from my page to your page and

40:44

I can get your beautiful newsletter . Awesome

40:47

. Well , thanks for coming on this show , lee . This

40:49

was fun .

40:50

Yeah , thank you so much for having me . I

40:53

really appreciate it and this was really fun .

40:56

Friends . That does conclude this episode of heart to

40:58

heart with Anna . Thanks for listening today . Hope

41:00

you found this program helpful . You have

41:02

any questions about the show . Please feel free to

41:04

send them to me at the hug website

41:07

That's heart unite the globe org . Or

41:09

at Anna at heart to heart with Anna comm

41:12

. I'm sorry , it's really long to spell So

41:14

it's easier to go to the website

41:16

, but I'll put the links in the show notes

41:18

. Okay , so any of you are on your bike

41:20

or in your car , you don't have to worry about grabbing

41:22

a pen . The link to the heart dialogues

41:25

and to my website will be

41:27

in the show notes . Have

41:29

a great day , my friends , and remember

41:31

you are not alone .

41:37

Thank you again for joining us this week . We

41:39

hope you have become inspired and empowered

41:41

to become an advocate for the congenital

41:43

heart community . Heart to heart with Anna

41:45

, with your host , anna Jaworski , can be

41:47

heard at any time , wherever you get your

41:49

podcasts . A new episode is released

41:51

every Tuesday from noon Eastern time

41:54

.