0:00

The methods of anesthesia that I've described here

0:02

. This may not be what you receive

0:04

for a similar procedure at your own facility

0:06

. That's okay . One of the things that we have

0:08

learned in our training is that there's 100 different

0:11

ways to do an anesthetic for any given case ["The

0:19

Heart With Anna"] .

0:20

Welcome to Heart with Anna . I

0:22

am Anna Jorski and your host , muscle

0:24

heart , mom to an adult who was born with a single

0:27

vitriculture and who is 29

0:29

years old . That's the reason I am

0:31

the host of your program . With

0:33

me today is Frank Jorski . Frank

0:36

Jorski is my husband and

0:38

dad to our daughter Hope , who was born with

0:40

a single ventricle heart , and to our

0:42

heart-tubby son Joey . Frank

0:46

is the Certified Registered Nurse and Aesthetist

0:48

, or CRNA for short . Today

0:51

, frank and I will talk about special considerations

0:53

for members of the CHD community

0:56

when it comes to visiting the Electrophysiology

0:58

Lab , or EP Lab . This

1:02

can be a very scary place for heart warriors

1:04

to visit . People visit

1:06

the EP Lab when their heart's electrical

1:09

system is not behaving . The

1:11

heart may be having extra beads , maybe

1:14

beating too , fast or too slow

1:16

or have intervals between beads

1:18

that aren't quite right . Patients

1:20

often feel their hearts beating out of their chest

1:23

or they faint or have

1:25

other symptoms . Some patients

1:27

don't even realize their hearts are misbehaving

1:29

until they have an electrocardiogram

1:32

, also known as an ECG

1:34

or EKG . Frank

1:36

is gonna answer some questions about arrhythmias

1:39

from the perspective of a nurse , anesthetist

1:41

the medical professional who

1:43

helps with pain management and anesthesia

1:46

. After our interview , I will

1:48

read the front matter of the heart of a heart

1:50

warrior , volume two , endurance

1:52

. You can sign up to take part in

1:54

a book study of volume two on our

1:57

website , babyheartspresscom

1:59

. We will be discussing

2:01

the book on Thursdays from five

2:04

to 6 pm , usa Central

2:06

Time . We'll discuss the book for

2:08

the first three weeks and the fourth week will

2:10

be a jeopardy game where people can win prizes

2:12

. All questions will be based

2:14

on volume two and what we discussed

2:17

in the book study sessions . It's

2:19

only $10 per session and people are

2:21

welcome to join any session , but I'm

2:23

limiting participation to 12 people

2:25

so we all have time to share in the

2:27

discussion . Welcome back to Heart

2:29

to Heart with Anna Frank .

2:32

Well , thank you , anna , I'm glad to be back here with you

2:34

again .

2:35

Well , you know , I always love having you on the

2:37

program and I love it when you can teach us something

2:39

new .

2:41

Well , I am an easy get for you

2:43

, because how can I refuse ?

2:48

Well , Frank , when I talk to members of

2:51

the CHD community who need to visit

2:53

the EP Lab , they're usually really

2:55

nervous and they're afraid . Can

2:57

you start by telling me the best thing a patient

3:00

can do to prepare for a visit to

3:02

the EP Lab ?

3:04

At some point you will have a pre-procedure

3:07

visit , a pre-op visit , with your

3:09

anesthesia provider or with member of their staff

3:11

, and they will ask you a bunch

3:13

of questions to find out more about your medical history

3:15

, your allergies , any problems you may have

3:17

that would affect your anesthesia . They'll

3:20

also give you preoperative instructions . It's

3:22

very important to listen carefully to their

3:24

instructions , listen to what they say , clarify

3:27

any questions you have , specifically ask

3:29

them questions about when you should

3:31

stop eating before the procedure , and

3:34

also specifically that you should ask them about

3:36

your medications . Many of the medications

3:39

that you take on a regular basis

3:41

they'll want you to stop at a certain point before

3:44

your procedure . Some of the medications you

3:46

take on a regular basis they'll want you to take the morning

3:48

of the procedure . So clarify exactly

3:50

which medicines to take , which one's not to take . That's

3:52

very important .

3:53

That's so important because so many of our heart

3:55

warriors are on multiple medications

3:57

.

3:58

Yes , and the medications can affect both

4:01

the performance of your heart terms of the electrophysiology

4:03

, in terms of the current . They can also affect things like

4:05

bleeding or propensity to bleed

4:08

if you're on a blood thinner of some kind .

4:10

Right , okay , so that's all really good advice . So

4:12

make sure when you're in that pre-op visit

4:14

you have a list of all of your medications

4:17

and you double check with

4:19

whoever the screener is . Make sure to

4:21

ask them specifically for each

4:23

and every drug that they take .

4:25

Yes .

4:27

Okay , well , that is good to know . So

4:30

why is anesthesia necessary

4:32

for ablation of ventricular

4:34

dysrhythmia such as ventricular

4:36

tachycardia or V-tech , and

4:39

premature ventricular contractions

4:41

or PVCs ?

4:44

When a person goes to the cath lab for

4:46

correction of blockages

4:48

of their vessels , frequently they give a

4:50

very light sedation and

4:52

they use a local anesthetic and

4:55

put the catheters into

4:57

the groin and it causes some pain

4:59

and discomfort but it is bearable with only a light

5:01

sedation . One of the reasons why

5:03

a stronger anesthetic , a

5:05

deeper sedation , is necessary for ablation

5:07

is that they are actually going to place

5:09

a wire inside of your heart and they

5:11

are going to burn tissue . They are going to place

5:14

that wire up against a part of the heart wall

5:16

through which the electricity is conducted

5:18

and they are going to pass radio frequency energy

5:20

. It is called radio frequency ablation

5:23

or RFA , and it hurts

5:25

. It literally hurts . It feels like somebody

5:27

is stabbing you in the heart with a very tiny needle .

5:29

Sounds painful .

5:31

Yes , and people do have an ache . Afterwards they

5:33

say , oh , my heart hurts . Well , that is not surprising

5:36

. They have actually burned a little bit of the tissue inside

5:38

of there . So the two reasons why

5:40

a deeper sedation is necessary is one

5:42

because it hurts , and the other reason is because

5:45

we need you to hold very still .

5:47

So if a person is Right because you don't want to burn

5:49

the wrong spot .

5:51

Absolutely correct . We go to great lengths

5:53

to make sure the heart is as still and as

5:55

motionless as possible . Obviously we can't stop

5:58

the heart for these , but sometimes we'll

6:00

actually encourage the heart to beat slower

6:02

. So there's more time between beats to

6:04

place the wire correctly . And if we're

6:06

controlling the patient's ventilation because

6:09

for some procedures we do actually take control of

6:11

the ventilation we will decrease

6:13

the volume of their ventilation so that the diaphragm

6:15

moves less and the heart moves less .

6:18

I did not know that . So does that mean

6:20

that people who have these

6:22

ablations will be intubated ?

6:26

Sometimes , but not specifically for the

6:28

ventricular dysrhythmias , and

6:30

the reason for that is that going

6:33

for a deeper anesthetic , a general anesthetic

6:35

, can be contraindicated if

6:37

you're doing a ventricular ablation , and

6:39

the reason for that is because it will actually

6:41

suppress the dysrhythmias . And

6:43

I've done cases before more than once

6:45

in which we'll have a patient under a fairly heavy

6:48

sedation not a general anesthetic but

6:50

a deep sedation using a propofol

6:52

and the cardiologist

6:54

will ask me to actually lighten up the sedation

6:57

, to back off on it , because

6:59

the medication is masking the dysrhythmias

7:01

. If the person is not actively in the dysrhythmia

7:04

when you're trying to ablate

7:06

it , you literally can't find it . You have

7:08

to see the dysrhythmia with the

7:10

sensors you place inside the heart . So if

7:12

they don't produce the dysrhythmia , you can't treat the

7:14

dysrhythmia . So we'll back off on the sedation

7:17

so that the dysrhythmia will show itself .

7:20

Do you also give them medication so they

7:22

don't remember it ? Because this to me

7:24

sounds like it would be a scary thing

7:26

to remember .

7:28

We can . There are medications that fall

7:30

into the category of benzodiazepines

7:32

. The most commonly known one of those is Valium

7:34

. We can give IV Valium . More

7:37

commonly , we use a medication called Medazolam

7:39

, which is also called Versed , and

7:41

Medazolam is a great medication because it

7:44

does two things very well it decreases

7:46

anxiety and it tends to suppress

7:48

memory of the events that happen while you have that

7:51

medication in your body . I

7:53

personally have had Versed before a procedure

7:55

not an EP procedure , but another kind of

7:57

surgery and I don't remember anything

7:59

from the time that they gave the medication till

8:02

after I woke up , even though I was awake

8:04

for some time before I actually fell asleep for

8:06

the anesthetic . So that's a good thing

8:08

. Also , the medication that we give , the Propofol

8:10

, commonly used for sedation , all by itself

8:13

, frequently with a deep enough sedation will

8:15

produce amnesia too .

8:17

Okay . And that's okay

8:19

, so what kind of anesthesia is

8:21

used when you have ablations ?

8:24

It depends what kind of ablation you're having . You

8:27

were talking specifically about ventricular dysrhythmias

8:29

. For ventricular dysrhythmias you don't

8:31

want to use too strong of an anesthetic because it

8:33

will suppress the rhythm . But there are some kinds of

8:35

procedures , specifically atrial

8:37

fibrillation treatment . Atrial

8:39

fibrillation is a common dysrhythmia after heart

8:41

surgery , for congenital heart defects

8:44

and for adults with acquired heart disease . Atrial

8:47

fibrillation we can use a general anesthetic

8:49

and we also almost always intubate

8:52

the patients . We'll do a general anesthetic with

8:54

an endotracheal tube for a

8:56

couple of reasons it's easier to manage the airway

8:58

if you're going for a deep anesthetic and

9:00

it's safer to manage the airway also because you guard

9:02

the airway from aspiration and because

9:05

sometimes we'll do transasophageal

9:07

cardiogram , a TEE , during these procedures

9:09

. So you guard the airway with a tube

9:12

in the trachea and they can pass the TEE probe

9:14

down the esophagus .

9:16

Okay , I know a lot of patients

9:18

who have had those TEEs

9:20

. Hopefully their anesthesia provider

9:22

also explained this to them . But

9:25

I'm hoping that this will help people who have yet to

9:27

have an ablation or who are a little bit

9:29

nervous about having an ablation , Because

9:31

I think for a lot of people the anesthesia

9:34

is one of the scariest parts .

9:36

Yes , I agree , and I'd like to clarify . You

9:38

were saying anesthesia for TEEs . I

9:40

was talking specifically about a TE done during

9:43

an ablation , like for atrial fibrillation . But

9:45

if a person has a TE just for a

9:47

sake of a TE . It's very commonly done

9:49

under sedation . They won't have a general anesthetic

9:52

with endracheal too .

9:54

Okay .

9:54

And we'll generally use propofol for that . Although

9:57

there are medications we can use , like

9:59

verset , like fentanyl , like ketamine

10:01

, which we can use . Sometimes , again , it varies

10:04

from person to person in terms of the

10:06

patient's needs , in terms of the

10:08

standard of practice the institution you

10:10

work at , in terms of the pattern of practice

10:13

the individual anesthesia provider , be it an anesthesiologist

10:16

or nurse anesthetist , commonly uses .

10:19

Okay . Well , it's nice to know that

10:21

the medical team is going to look at each

10:23

person individually

10:25

and they will determine what concoction

10:28

of medications is going to work best

10:30

for each person , Because I

10:32

don't think with anesthesia or with anything , there's

10:34

a one size fits all solution

10:36

.

10:37

That's absolutely true . The methods of anesthesia

10:39

that I've described here . This may not be

10:41

what you receive for a similar procedure

10:43

at your own facility . That's okay . One

10:46

of the things that we have learned in our training is that

10:48

there's 100 different ways to do an anesthetic . For

10:50

any given case . You can use different

10:52

techniques , different equipment , different modalities

10:54

, and that's okay as long

10:57

as you effectively keep the patient calm

10:59

, under control . Hopefully

11:01

, you have no memory of the event itself .

11:03

My last question for you , Frank , is what

11:05

question should a patient ask

11:07

their anesthesia provider ?

11:10

When it comes to the preoperative phase , it's important

11:12

to know what they expect of you . When it comes to the

11:14

day of the procedure , feel free to ask any questions you want

11:16

. Ask them specifically

11:19

what's going to happen when they get into the room

11:21

for the procedure itself . It helps a lot

11:23

for anybody's anxiety to be prepared for those

11:25

kinds of things . So ask them what they

11:27

plan to do . Ask them to explain things . Sometimes

11:30

you don't want to know all the precise details Some

11:32

people don't want to but if you do want to , feel free

11:34

to ask . We'd be happy to tell you what we're

11:36

going to do . All the anesthesia providers

11:38

that I work with working in the electrophysiology

11:41

lab have lots of experience

11:43

and they will be happy to tell you what

11:45

they're going to do and why . So ask

11:48

them any questions you have . Explain

11:50

to them any concerns you have specifically

11:52

.

11:53

What kind of questions do people generally ask

11:56

you ? Are most people nervous ? Are

11:58

they afraid when they're in the EP lab with

12:00

you ?

12:01

Most people are nervous for any kind of procedure

12:03

, for any kind of anesthesia . People can

12:05

be more afraid of the anesthesia than they can of the procedure

12:07

itself . That's not uncommon . Most

12:10

people also will try to hide their nervousness

12:12

in various ways . They'll talk

12:14

very loudly , They'll make a lot of jokes or

12:16

they'll go the opposite direction . They'll be extremely

12:18

quiet and guarded .

12:20

So if you could give them the top three

12:22

questions that every person should

12:25

ask their anesthesia provider , what

12:27

would those three questions be ?

12:30

Again , do you mean on the day of the procedure ?

12:33

When they're sitting in front of their anesthesiologist

12:36

or their nurse anesthetist and

12:38

they're about to go under . What questions

12:40

should they ask ?

12:42

Well , what would I do if I were the patient ? I

12:44

would ask them please tell me when you're going to start

12:46

, don't surprise me . I

12:49

would ask them is there anything

12:51

specific you need me to do ? Do you need me to be in a certain position

12:53

? Do you need me to breathe in a certain manner

12:55

? Do you need me to open or close my

12:57

eyes ? Whatever it is ?

12:59

Do they ask if it's going to hurt and if you can

13:01

help them with that .

13:03

They absolutely do ask if it's going to hurt Because that's what I would

13:05

want to know .

13:06

Is this going to hurt ? Am I going to feel it ? Am

13:08

I going to remember it ?

13:10

One of the medications we use primarily is called Propofol

13:12

and it's an excellent drug . It

13:15

tends to help you go to sleep very fast and wake up

13:17

very fast afterwards . However , it

13:19

does cause some chemical irritation of

13:21

the vein when it goes in . Now we can give

13:23

a local anesthetic Right before

13:25

we give that or with that medication to help blunt

13:27

that pain . Sometimes it works , sometimes

13:30

it doesn't . I've had the medication myself

13:32

before surgery . Yes , it did hurt

13:34

going in . No , it doesn't cause any damage

13:36

to the vessel and I have

13:39

had it on more than one occasion and I didn't

13:41

have any problems going back , knowing that it might

13:43

hurt again the next time . I can't tell

13:45

you right now what it felt like because I have no recollection

13:47

, but I know that it hurt when they gave it to me

13:49

.

13:50

Is Emla Cream something that can be

13:52

used ?

13:53

Emla Cream is really a topical anesthetic . Emla

13:55

Cream is used to help manage

13:58

the pain for starting an IV , for actually making

14:00

a placement of an IV catheter . Now what

14:02

I'm talking about is you actually get pain inside

14:04

the vessel . When the medication flows inside , it irritates

14:06

the inside of the blood vessel and causes a burning

14:09

pain or an aching pain . There

14:11

are medications you can give . You can

14:13

give one of the components of Emla Cream . You can give

14:15

lidocaine IV through the IV

14:17

before you give the Propofol , and

14:20

that will help to suppress the pain . But

14:22

frequently we tell people is take a deep breath

14:24

and breathe through it and it'll pass . It's

14:27

not the worst pain you'll ever feel . It doesn't

14:29

last very long . It doesn't cause any damage

14:31

.

14:32

So if you're a big chicken like me and I

14:34

said I know it's going to hurt

14:36

Can you give me some lidocaine

14:38

? Do you have that on your cart ? Would you be able to give me

14:40

some ?

14:41

I would give you lidocaine and , depending on your

14:43

degree of anxiety , I might give you some verset

14:45

also , because at least in that case you'd

14:47

be less likely to remember it later on .

14:50

That's good to know .

14:51

Absolutely , Absolutely , and also

14:53

the verset . If I gave it to you , the medazolim , it

14:56

would decrease your anxiety that you

14:58

have in anticipation of it possibly hurting

15:00

. There are things we can do to help prevent

15:02

it from hurting . Minimize the hurt , minimize

15:04

the recollection of the hurt .

15:07

So one of the scariest things seems to be your

15:09

endosarithmia . You don't know what's causing it

15:11

. You don't know if the ablation is going to be successful

15:13

. You don't know how much is going to

15:15

hurt Some of the patients

15:18

that I've talked to . They're afraid that they

15:20

may be admitted to the hospital

15:22

, especially if they can't get the ablation under

15:24

control . So there's a lot of conditions

15:27

that can be anxiety producing

15:29

and it's nice to know

15:31

that you can talk to the CRNA or the anesthetist

15:34

and say I'm really nervous

15:36

about this because there's so much uncertainty

15:39

. Is there something you can give me to help

15:41

me with that ? Because I imagine

15:43

if the patient is more relaxed the

15:46

procedure would go more smoothly .

15:48

Not necessarily the procedure itself , but at least the induction

15:51

of anesthesia . Once the patient is anesthetized

15:53

, their state of mind , it does not affect the

15:56

progress of the procedure but it can raise

15:58

their blood pressure . It can raise their heart rate if they're

16:00

agitated or concerned . That's

16:02

completely understandable . One of the worst things

16:04

about any kind of anesthesia is the feeling of

16:06

loss of control . If

16:09

you lose control of your situation , that's scary

16:11

. So if

16:13

you can reassure them , or even if you

16:16

can't reassure them , if you can distract them . I

16:18

commonly talk to people about mundane things

16:20

as we're putting monitors on getting settled

16:22

in before we actually induce the anesthesia . Because

16:25

I want them to think about things that are calm

16:27

and normal , I'll ask them where they would

16:29

be that day if they weren't in the hospital , if they'd

16:31

be at work , if they'd be at home with their family . Ask

16:33

them where they came from , how far they had to drive to come

16:36

in , because I find that it puts

16:38

them into more of a controlled frame of mind . They

16:40

feel like they're normal selves in a very unfamiliar

16:42

environment .

16:44

Yeah , it's important to feel like you have some

16:46

control . It's important to feel like this

16:49

is temporary Within

16:51

. After this , I'm going to lunch at

16:53

Cracker Barrel . Wherever you're going to lunch

16:55

, it gives you something to look forward to .

16:58

That's one of the things I talk about . Is I talk about where you're

17:00

going to go for lunch afterwards ?

17:01

Yeah , You've got to have that

17:03

little carrot to help you get through it . Yes

17:06

, this is bad , but it's only temporary

17:08

and then I'm going to do something hopefully

17:10

enjoyable . So well , thank

17:13

you for explaining about anesthesia

17:15

during a really difficult and scary

17:17

time for our community

17:20

. I think that the information you

17:22

gave will be helpful to them . Frank .

17:25

Glad to help in any way that I can and for anybody

17:27

that I take care of as a patient . Ask

17:30

your questions . There's no mysteries . There's no

17:32

secrets . We'll be happy to tell you everything we're going to

17:35

do Terrific .

17:36

That does conclude the interview portion of the

17:38

podcast . We'll take a short break but when

17:40

we come back you'll have a chance to hear me read

17:42

from our new book , the Heart of a Heart Warrior

17:44

, volume 2 , endurance . Today

17:46

you'll hear me read the front matter of the book , including

17:49

a forward by Heart Mom and former

17:51

Heart to Heart with Anagest Dana Henning

17:53

. This content is not intended to

17:55

be a substitute for professional medical

17:57

advice , diagnosis or treatment

17:59

. The opinions expressed in the podcast

18:02

are not those of Heart should unite

18:04

the globe , but of the hosts and guests

18:06

, and are intended to spark discussion about

18:08

issues pertaining to congenital heart disease

18:11

or bereavement . Just

18:34

like in February , I'm going to be reading from

18:36

our new book , the Heart of a Heart Warrior , in

18:38

March we will be reading from Volume

18:40

2 , endurance . I'm

18:42

very excited about this . I'm going

18:44

to skip over the warning disclaimer and

18:47

the table of contents and the dedication

18:49

, because all of that is the same as

18:51

in the first book and I'm just going to start

18:53

with the forward . The

18:55

forward to book 2 is different than the

18:57

forward to book 1 . So here

18:59

we go Forward

19:01

. My name is Dana Henning

19:04

and I have been married to my best friend , brian

19:06

, for 23 years . My

19:08

passion is supporting families of children

19:11

with congenital heart defects CHDs

19:14

. I am the coordinator of Mended

19:16

Little Hearts of Austin and I serve

19:18

on the Parent-Faculty Advisory Council

19:20

at Dell Children's Medical Center . Our

19:23

heart journey began when my son , evan

19:26

, was born in August 2011

19:28

. We knew he had two CHDs

19:31

previously found when I was pregnant

19:33

. They diagnosed him with hypoplasic

19:35

left heart syndrome , hlhs

19:37

, and a common atrium . Once

19:40

he was born and they completed his

19:42

first catheterization , we learned

19:44

he had four other heart defects . So

19:46

the three stage surgeries they had told us

19:49

he would need transformed into

19:51

his only hope was a heart transplant

19:53

. We were terrified but

19:56

hopeful . Until we learned about

19:58

Evan's heart defects , we had only heard

20:00

about children being born with holes in their hearts

20:02

. We had no idea children could be

20:04

born with extremely severe heart defects

20:07

. Nobody and either of our families

20:09

had heart complications . As babies , we

20:12

felt very alone . Even with all the family

20:14

support we received , nobody

20:16

really knew what to say , except that they would

20:18

keep all of us in their prayers . Honestly

20:21

, I lived each day to the fullest

20:23

, not knowing how my child's

20:25

life was going to play out . Evan

20:27

had his first open heart surgery at just

20:29

ten days old , where they performed a

20:32

hybrid Norwood procedure and placed

20:34

a large stent in his ductus arteriosus

20:36

. Evan's doctors listed

20:38

him for a heart transplant at two and

20:41

a half weeks old and he received

20:43

his donor's heart at six and a half months

20:45

old . The doctors

20:47

discharged Evan from the hospital

20:50

after seven and a half months , but

20:52

only as far as Aron and McDonald House . Evan

20:55

had to stay within a two hour radius

20:57

from the hospital until he was three months

20:59

out from transplant . We longed

21:01

to go home , as we had seen so many

21:04

families come and go throughout the time we were

21:06

there . Eventually , after

21:08

nine months spent in Dallas , we

21:10

felt relieved to take our son home

21:12

to Cedar Creek . I learned

21:15

about Mended Little Hearts while Evan was impatient

21:17

. They started the Dallas chapter

21:19

in October 2011

21:21

and they held their meetings at the hospital

21:24

. I attended as many meetings

21:26

as possible and I finally found

21:28

a core of heart moms that I could relate

21:30

to . However , once I returned

21:32

home , I felt very alone all over

21:34

again . All my heart mom friends

21:36

lived in various cities all over Texas

21:38

and Oklahoma . I eventually

21:41

heard about the Children's Heart Foundation

21:43

and met a bunch of local heart families

21:45

. I met Anna Jaworski and her husband

21:47

Frank when I co-chaired the 2016

21:50

Central Texas congenital heart walk

21:52

. I also met David Franco

21:54

, whose story is in this book , as he

21:56

was always available to help with whatever

21:59

was needed . Eventually

22:01

, some of our heart families started Mended

22:03

Little Hearts of Austin and I became

22:05

involved in our local chapter . I've

22:08

been the coordinator of our Austin chapter

22:10

for several years , as I never want

22:12

anyone to feel alone . Each

22:14

of our heart warriors has their own journey

22:16

, but the loneliness and the need for support

22:19

and community live in each of us . I

22:21

wish I would have come across a book like this when

22:23

my son's heart journey started . Talking

22:26

about the journeys of so many others brings

22:28

hope to my heart . I've also

22:30

had the privilege of being on several Heart to

22:32

Heart with Anna podcast episodes . I

22:34

truly appreciate all that Anna brings to

22:37

the heart community and I appreciate

22:39

her passion for our heart families

22:41

. This book covers multiple

22:43

generations of heart warriors , their

22:45

struggles and how they fight to live

22:47

their best lives with CHDs . That's

22:50

written by Dana Henning , austin Mended Little

22:53

Hearts coordinator . Parent faculty

22:55

advisory council member . Adult Children's

22:57

Medical Center Profess

22:59

. Welcome to the book we

23:01

wish somebody would have given us many years

23:03

ago . Our dream with this book

23:06

is to provide a resource to let others

23:08

in the congenital heart effect CHD

23:10

community know they are not alone

23:13

. Who are we ? The

23:15

editors are a parent of an adult with a

23:17

CHD , anna , and

23:19

a heart warrior , megan . We

23:21

came to know each other thanks to Facebook

23:23

. We have known each other since January

23:26

2015 , but it feels as

23:28

though we have always been part of each other's

23:30

lives , although 8261

23:33

miles separate us , with

23:35

me being in Temple , texas , and

23:38

Megan being in Brisbane , australia

23:40

. Living with CHDs

23:42

in the 21st century is better than

23:44

it was when most of the contributors to

23:46

this book were born . When

23:48

they were born , there was no internet

23:50

. More babies were born every

23:53

year than there were adults alive with

23:55

CHDs , and medicine was

23:57

more of a trust me on the doctor type

23:59

of practice rather than one based on

24:01

family-centered care . My

24:04

heart warrior was still a child and

24:06

I didn't even know Megan when the idea

24:08

for this book was conceived . While

24:11

a handful of adults with CHDs wrote

24:14

for my two other anthologies , the heart

24:16

of a mother and the heart of a father , the

24:18

idea of having a book entirely

24:20

written by heart warriors was still

24:22

a dream , especially since my wish

24:25

was for my own child to be a contributor

24:27

. It has taken us years

24:30

to gather essays , work with the contributors

24:32

and we find our vision for the book , but

24:34

it has finally happened . As

24:37

scary as it is to be the parent of

24:39

a child with a CHD or an adult

24:41

with a CHD , these are miraculous

24:43

times we live in . The diagnostic

24:46

tests available , drugs and supportive

24:48

devices such as implantable cardiac

24:51

defibrillators , icds , left

24:53

ventricular assist devices , lvads

24:56

and even implantable loop recorders

24:58

make the management of CHDs

25:01

something that is less scary and

25:04

more successful . They have

25:06

refined the surgical procedures to help

25:08

those born with CHDs over years

25:10

, which now sometimes include

25:12

the use of robotics , 3d

25:14

printing and even stem cells to

25:17

help our heart warriors live their best

25:19

lives . These types of

25:21

technologies are game changers . It

25:23

truly is an exciting time for us to

25:25

be alive , to witness history

25:27

in the making . That

25:29

is what makes this book so valuable

25:32

and so unique . Many

25:34

of the people who have written for this book were

25:36

some of the early pioneers . These

25:38

children had parents who refused to give

25:40

up on them and who decided that

25:43

a potential future was better than no future

25:45

at all . This gave permission

25:47

to surgeons , cardiologists and other medical

25:49

professionals to do what had

25:51

to be done in order to save their children's

25:54

lives . They put their trust

25:56

in the medical system and to feel the pediatric

25:58

cardiology blossomed Today

26:01

. There are often multiple procedures

26:03

available to help medical teams treat

26:05

their patients and there are enough

26:07

results from previous cases to

26:10

give them an idea of the potential outcome

26:12

. Sadly , there was a downside

26:14

to being a pioneer Bullying

26:16

, confusion , misinformation and

26:19

uncertainty were part of everyday life

26:21

for many of our heartwarriors and their

26:23

families . Many heartwarriors

26:26

were told they were fixed after their first

26:28

surgery and for some they would

26:30

lead happy , healthy lives until

26:32

an unexpected event would land

26:35

them in the emergency room . Depression

26:38

, anxiety and post-traumatic stress

26:40

are all conditions that many heartwarriors

26:43

and their family members experience

26:45

because of the circumstances involved

26:47

with such uncertain futures

26:49

. Muriat hospitalizations

26:52

and procedures , and even conflicting solutions

26:54

from professionals , depending on when

26:56

and where care was administered , contributed

26:59

to challenges with mental health . This

27:02

book is needed because of the shared

27:04

experiences so many heartwarriors

27:06

understand . People need to know

27:08

they are not crazy , they are not misinformed

27:11

and they are not alone . This

27:14

book is for all the people in the CHD

27:16

community who believe that their lives

27:18

were the lives of their children , siblings

27:21

, grandchildren or friends matter

27:23

. They had lives worth

27:25

saving , despite the trials and

27:27

tribulations . There is a book for

27:29

anyone who has dealt with a broken heart

27:31

, but who chose to look at the whole person

27:34

instead of just a damaged organ

27:36

. This book is for the believers

27:38

, the dreamers and the fighters . This

27:40

book is for all heartwarriors and their

27:43

families . Thank you for the sacrifices

27:45

you have made . May the stories in

27:47

this book make your hearts a little lighter

27:49

and may you realize if you

27:51

didn't know this already you belong

27:54

to a very special substance of

27:56

the world . Anna Marie Jorski

27:58

.

28:03

Heart to Heart with Anna is a presentation of Hearts

28:05

Unite the Globe and is part of the Hugg Podcast

28:08

Network . Hearts Unite the Globe

28:10

is a non-profit organization devoted to

28:12

providing resources to the congenital heart

28:14

defect community to uplift , empower

28:17

and enrich the lives of our community members

28:19

. If you would like access to free

28:21

resources pertaining to the CHD community

28:23

, please visit our website at wwwcongenitalheartdefectscom

28:28

for information about CHD , the

28:31

hospitals that treat children with CHD , summer

28:33

camps for CHD survivors and much

28:35

, much more .

28:38

Acknowledgements . This

28:40

publication took over four years to go

28:42

from concept to actual book . First

28:45

, we need to acknowledge and thank every person

28:47

who contributed to this book . We

28:49

wrote , edited and revised essays

28:51

repeatedly . We have grown closer

28:53

to these amazing people and their stories

28:55

inspire us . Since you can easily

28:58

see the names of each of the contributors in

29:00

the Table of Contents and throughout

29:02

the book , we won't list each of them

29:04

here too . However , I would like to

29:06

acknowledge a few family members who helped

29:08

us with contributions , especially

29:10

after a heart warrior passed away . Special

29:13

thanks to Chris Atherton , roseanne

29:16

Franco , roseanne Bishop , mary

29:18

Kay Klein , arlen Kerr and

29:20

Dawn Martin . We really appreciate

29:23

you helping us to make sure the contributions

29:25

were the legacy your loved ones deserved

29:28

. Dana Henning and I have been

29:30

friends for years . When I thought about

29:32

who would be the perfect person to write a forward

29:34

about endurance , I could think

29:36

of no one more qualified than Dana to

29:38

write the forward . Her son has been

29:41

through so much , but Dana has always

29:43

been by his side and also present

29:45

for parents who needed to know they weren't

29:47

alone . I extend my heartfelt gratitude

29:50

to Dana for dedicating her time to

29:52

craft a personal forward that enhances

29:54

the intrinsic worth of this book for

29:56

every reader who encounters it . I

29:59

would like to thank members of Facebook who responded

30:01

to polls . We would like to thank our beta

30:04

readers , especially Joe Flowers , lowry

30:06

Smith , beth Greenaway , julie Valaderes

30:08

, helen Simpson , kimmy Salvage

30:11

, sasha Elizabeth O'Donald and her

30:13

daughter Odette , daphne Davis-Patrick

30:15

, dina Barber , sherry Turner and

30:18

Cora and Valerie Garan . Feedback

30:20

from the congenital heart-to-fake community is

30:22

so important . Thank you especially

30:24

to Jane Hunt , debbie Gilmore , rita Skoggins

30:27

, amy M Lee and Jenny Muscatel

30:29

. All of you are always

30:31

there with helpful advice and an encouraging

30:33

word . There are always

30:35

people behind the scenes who are instrumental

30:38

. Brenda Vignoroli was our webmaster

30:40

extraordinaire . She did so much

30:42

to help me in the early stages and

30:44

until Lauren Elizabeth took the reins

30:46

from her . Lauren did a wonderful

30:48

job of revamping a website just in

30:50

time for the launch of Baby Hearts Press as

30:53

a hybrid publisher . Janet

30:55

Scherer and her daughter Stephanie have also

30:57

provided encouragement and support

30:59

. Thanks to Monica Mossy , the spreadsheet

31:01

queen . We had a list of people who wanted

31:03

to be part of the book and their contact

31:06

information . Many of you know this

31:08

book as the second in the heart of a series

31:10

. Thanks to suggestions

31:12

from Jenny Muscatel and Amy M Lee , I

31:14

decided I needed to get an artist to

31:16

make new book covers for all three books

31:18

to show they are in a series . Thank

31:21

you to Lauren Elizabeth for coming up with

31:23

the clean , uncluttered design we needed

31:25

for this book series . Our

31:27

goal with this book was to have one place where

31:30

adult heart-warriors could share important

31:32

aspects of their lives with the world , to

31:35

stand as a testament to the resilience of

31:37

the human body and mind . The

31:39

pages that follow are not the stories in

31:41

their rawest form . Instead

31:43

, megan tones an hour to each author to

31:45

help them craft their stories . Amy

31:48

M Lee even added a helping hand in

31:50

the developmental editing phase and

31:52

gave several contributors her helpful insight

31:55

. I know that other family members

31:57

, friends and writing buddies also helped

31:59

in this process . I'm sorry not to

32:01

have the names of all those people to give credit

32:03

where credit is due , but if you're reading

32:06

this and you are one of those helpers , thank

32:08

you . Megan tones

32:10

met with me regularly to edit

32:12

work on formatting the book , help with

32:14

communicating with our contributors and so much more

32:17

. Having a co-editor who actually

32:19

was a heart-warrior was something I

32:21

felt was necessary in order to give this

32:23

book the tone it needed . I

32:25

knew Megan understood each and every essay with

32:27

every fiber of her being . As

32:30

a heart mom . I could appreciate the stories

32:32

, but Megan lived many of those stories

32:34

, thoughts and experiences . Also

32:37

helping with the editing , formatting and design

32:39

work with the book was heart-warrior and

32:41

contributor Lauren Elizabeth . Thank

32:43

you for helping us finally get the advanced reader copies

32:46

of the book ready for distribution and

32:48

getting the book ready for publication . Our

32:50

husbands were instrumental because they sacrificed

32:53

many hours that we could have spent with them

32:55

in order to let us work on this book

32:57

. Franchi Worski and Matthew Tones

33:00

have never wavered in their support and love

33:02

for us during this book project . Franchi

33:05

also always fed me and kept me hydrated

33:07

. Thank you to both our significant

33:09

others for keeping us sane during the tenure

33:12

of this project . Although it

33:14

may seem unconventional , I think we also

33:16

need to give a thank you to our furry children

33:18

, who were literally by our

33:20

sides during so much of the process . My

33:23

miniature schnauzer , missy , often

33:25

insisted on sitting in my lap or

33:27

on my feet when I first started this book

33:29

After she passed away , buck

33:31

and Chloe were almost always on the pillow

33:33

by my desk or my feet or

33:35

somewhere in my office while I worked . It

33:38

was because of them I would get up to take breaks

33:40

and I never felt lonely while working on

33:42

the book , meaghan

33:44

writes . Belle often slept on the top

33:46

of the lounge chair behind me , snoring

33:48

loudly for a toy fox terrier , while

33:51

her younger sister , pandora , curled up

33:53

in the sun . Together . They were my office

33:55

ladies , although they were often joined by

33:57

their brothers , kratos and Brutus . Sadly

34:00

, brutus and Belle are no longer with

34:03

me . However , they're passing enabled

34:05

us to welcome Coco and Bella . Alas

34:07

. Kratos now has three younger sisters

34:10

and often looks a bit frazzled as he curls

34:12

up on my lap . That's

34:14

written by Meaghan Tones . Finally

34:17

, I believe there were many angels on our shoulders

34:19

while we worked on this book , and I would like

34:21

to acknowledge that . Sadly , we

34:23

have lost too many friends in the CHD

34:26

community far sooner than we would have liked

34:28

. I need to acknowledge my mother , who also

34:30

passed away in 2018 . In

34:32

her last days , she dealt with AFib and

34:34

I learned even more about treatments that many

34:37

of our hard warriors must endure , but

34:39

it's thanks to my mother's Texas sized

34:41

heart that I learned how to love others

34:43

from a young age . If I had to

34:45

sum up this book in a word , that's

34:48

the word I'd choose Love . The

34:51

introduction is written by Meaghan Tones

34:53

. In the year 2000

34:55

, I was 17 and on the cusp of

34:57

adulthood , as my classmates

35:00

bought cars , when on dates and

35:02

planned their gap years or daydreamed about

35:04

sharing houses and university

35:06

. I just looked forward to the next day

35:08

when I could lie on the lounge and watch music

35:10

videos . Even though I dropped

35:13

every class I could without affecting my capacity

35:15

to graduate , I still knotted off in

35:17

class and had trouble focusing . I

35:20

just managed to pass , even though I had

35:22

top marks in primary school and junior

35:24

high . Aware that I had a heart condition , the teachers

35:26

gave me a pass . My English teacher

35:29

even told me I could go to sleep while the rest

35:31

of the class watched Macbeth . Unbeknownst

35:34

to me and everyone else

35:36

, I was living with untreated heart

35:38

failure . I didn't know anybody

35:40

else with a congenital heart defect , chd

35:42

and my only involvement in the

35:44

CHD world was when I went to

35:47

my pediatric cardiologist every two

35:49

years , who always told my parents and me

35:51

I was fine . At my

35:53

graduation , the high school gave out several

35:55

awards . The class of 2000

35:57

sat in a gymnasium with their families as

35:59

they announced various achievements top

36:02

marks for core subjects like English

36:04

, maths and Sciences , and several

36:06

sports and community awards . Then

36:09

came Achiever of the Year . My

36:12

name was called . I walked

36:14

up to the bright stage with the Dexes and

36:16

Athletes , where a local member of

36:18

Parliament smiled and handed me a certificate

36:20

with both hands . She whispered

36:23

I understand it takes over

36:25

an hour for you to get to school . Perplexed

36:28

, I nodded as the

36:30

speeches went on . I wondered why I

36:32

had received the award . It had been

36:34

a rough year for my family , with several personal

36:36

problems which affected my studies to where

36:39

I received special consideration

36:41

. My family had moved two

36:43

years ago and I wanted to stay at my old

36:45

school , even if it meant commuting

36:47

across town by train . Still

36:49

, I knew of several other students facing

36:51

personal difficulties and a long

36:53

commute . Why was I singled out

36:56

? I felt self-conscious standing

36:58

up there holding an award that I received simply

37:00

for staying in school . My

37:03

cardiology team finally discovered my

37:05

heart failure in my mid-20s and

37:07

I found out that not only was I

37:09

not cured , but that I

37:11

needed another surgery . This

37:13

crisis prompted me to Google CHD

37:16

and I found what I had sorely

37:18

been missing in life Education

37:21

about CHD and a supportive

37:23

community . Words can't express how

37:25

validating and empowering it was

37:27

to discover that world . I

37:30

met many wonderful people from across the

37:32

globe who had had similar experiences

37:34

to me . All of them helped me

37:36

so much just by listening and sharing

37:39

. I have stayed in contact with

37:41

the community since then and

37:43

I feel like it would take an entire lifetime

37:45

to pay it forward , but I do what I can

37:47

. When Anna approached me

37:49

about this book in 2018 , I

37:52

had already known her for a few years

37:54

. In 2015 , I was a guest

37:56

on her podcast and before long

37:58

I started working as a scriptwriter for

38:00

Heart to Heart . With Anna , we would get

38:02

together with our dogs on Skype or a Facebook

38:05

call and brainstorm together to

38:07

write captivating bios and questions

38:09

for her many guests . Over the years I

38:11

knew she had edited two books written by heart

38:13

mothers and heart fathers , so I was

38:15

very excited . When she raised the idea

38:17

of editing a book written by adults

38:19

with CHD , I saw

38:21

a wonderful opportunity to create a resource

38:24

I thought back to when I was

38:26

an exhausted teenager , wondering how

38:28

on earth I would be an adult and what

38:30

a difference a book like this might have made

38:32

. As a person with CHD

38:35

myself , words like hope and inspiration

38:37

make me cringe a little as

38:39

I think back to the award I received at my graduation

38:42

and how it made me feel . It was

38:44

like people telling me I was brave and strong

38:46

for going through this or that procedure when

38:49

I didn't feel like I was doing anything other

38:51

than what I had to do . However

38:53

, I truly believe that this book conveys

38:55

a sense of hope and inspiration to

38:58

people living with CHD and their

39:00

families , not because the authors

39:02

have CHD and get up and live

39:04

their lives like everyone else , but because

39:06

of the creativity and tenacity they

39:08

display to be heard , prove

39:10

others wrong and do the best they can

39:12

, even if sometimes they had to

39:15

go about life a slightly different way than

39:17

they planned . I hope you

39:19

will read these diverse essays and

39:21

find yourself and your loved ones represented

39:24

, and maybe even imagine a future

39:26

you didn't think would be possible

39:28

. Anna and I organized the book

39:30

into ten different chapters , each representing

39:32

a different theme . You may start from the

39:34

beginning or read whichever chapters

39:37

you like the sound of . There's

39:39

also an index in the back to help you find

39:41

topics of interest to you . When

39:43

I write , the text will be in italics

39:45

to differentiate my writing from Anna's . You'll

39:48

notice that my spelling may be a bit different

39:50

from Anna's , since she's from Texas

39:52

and I'm from a little place called Brisbane

39:54

, australia . We felt it was important

39:57

that we and all the contributors shared

39:59

their words and spelling as they would

40:01

in their homeland , meek and tones

40:04

. That concludes this episode

40:06

of Heart to Heart with Anna . Thanks for listening

40:08

today . I hope you found this program helpful

40:11

. Please see our review of the podcast

40:13

on Apple Podcasts Reviews

40:15

. Help others searching for podcasts about CHD's

40:18

find us , and I appreciate

40:20

Frank coming on the program today

40:22

and sharing his information and advice with

40:24

us . I'm thankful for him and

40:26

for all of you loyal listeners , especially

40:29

the listeners who join our Patreon program

40:31

or the giving programs on Spreaker

40:33

or Buzzsprout For the cost of a cup

40:36

of coffee . You can help me continue to provide

40:38

free programming to the CHD

40:40

community . That's all for today and

40:42

remember , my friends , you are not alone

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.

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Thank you again for joining us this week . We

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hope you have become inspired and empowered

40:50

to become an advocate for the congenital

40:52

Heart community . Heart to Heart with Anna

40:54

, with your host , anna Jaworski , can be

40:56

heard at any time , wherever you get your

40:58

podcasts . A new episode is released

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every Tuesday from Noon Eastern Time

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.