Episode 14

full
Published on:

18th Apr 2023

A tale of hypoplastic left heart syndrome: Anna Jaworski's fierce advocacy to save her son- 14

Frank and Anna Jaworski's baby, Alex, was born in 1994 and was seemingly ok...to the doctors and nurses. Frank and Anna disagreed. Alex was showing many symptoms of concern including not feeding well, tachycardia, not gaining weight, jaundice, and lethargy. Frank and Anna were continuously gaslighted until Alex's problems became emergent at just two months old. From there, a miracle began to take shape as Alex eventually landed in the right doctor's arms and a diagnosis was made: hypoplastic left heart syndrome. Alex would undergo three open-heart surgeries in before he was 18 (we cover two in this episode) all at University Hospital in San Antonio, Texas.

This story is an incredible story of hope and highlights the importance of listening to your instinct and advocating for your child(ren).

Anna speaks interchangably about Alex and Hope. Alex made the transition to a woman in her early 20s and now goes by Hope. I hope to have Hope on this podcast soon.

Anna is now a fierce advocate for those suffering with congential heart defects. You can find her, her podcasts, and other resources at www.heartsunitetheglobe.org

Her publishing company is www.babyheartspress.com.

Medical terms used in this podcast include:

Hypoplastic left heart syndrome

single ventricle

Norwood procedure

bi-directional Glenn

Hemi-Fontan procedure

B-T-T shunt (Blalock-Thomas-Thomas shunt)

Dr. Park was Alex's former cardiologist

Dr. John Calhoon is Alex's cardiothoracic surgeon

ASD = atrial septal defect

VSD = ventricular septal defect

TGA = transposition of the great arteries

PDA = patent ductus arteriosus

PFO = patent foramen ovale

Anna's books:

"Hypoplastic Left Heart Syndrome: A Handbook for Parents"

"The Heart of a Mother"

"The Heart of a Father"

"The Heart of a Heart Warrior" (this is my newest book)

websites:

www.heartsunitetheglobe.org

www.babyheartspress.com


Website: The Heart Chamber (theheartchamberpodcast.com)


Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)


The Heart Chamber (@theheartchamberpodcast)


Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

Transcript

We feel it is important to have podcast transcripts available for accessibility.

This transcript was part of a portfolio of work that transitioned with this podcast when it joined our network. It has not been reviewed by our staff and may not match the formatting or standards of other episodes. If you find an error in the transcription, or if you would like to use a quote, please reach out to us at connect@37by27.com.

Boots Knighton: [:

Today I interview a heart mom. Anna Ky, she's an author, a publisher, and a podcaster. She is married to Frank Jaworski and Mom to Joey, who is Heart Healthy and hope a single ventricle survivor. Anna is currently the host of several different podcasts, including Heart to Heart with Anna. The C H C podcast as well as the executive producer of Bereaved, but still me, as well as a [00:01:00] Spanish podcast for the Heart Warrior community. She is also the executive director of Hearts Unite the Globe, or Hug for Short, which is devoted to providing free resources to the congenital heart community.

Anna had me on her podcast, heart to Heart with Anna, and it was such a fun podcast that we decided to have her on. The heart chamber as well, and I wanted her to share her story from the caregiver perspective, particularly as a parent of giving birth to a baby, knowing that something just wasn't quite right.

truly one that is a miracle [:

So buckle your seatbelts and get ready, and don't worry, Alex, who's now hope is thriving. It's a beautiful story, but a necessary one. So let's get to it.

I'm so excited to have you on today because there's like so much I wanna cover. obviously you're a heart mom and I, I would love some education around, you know, why you're a heart mom, like, go into all of that.

But then also, Dovetail from that to like then what has led you to the really important work you're doing now? And I want this to also be a platform to raise awareness around the Hug Network and Heart to Heart with Anna and all the other podcasts. And the, basically, I like to think of as a book incubator that you have going, for people to tell their important stories, their heart stories.

about like all the ways that [:

So,

Anna Marie Jaworski: Well, thank you so much, boots. It's such an honor to be on your podcast. I'm super excited about it. It was so much fun for me to have you on my podcast and so now it's exciting for me to be on the other end of the microphone

Boots Knighton: Yes. And I'll put a link in, uh, the show notes to find you and, and that podcast episode cuz we had a good time.

e realize But to speak to my [:

transplantation

ure and was not eligible for [:

while we were waiting for my two month old baby to come out of surgery my family and I were planning a five-year-old birthday party

Boots Knighton: Let's go back to the Norwood procedure. can you explain a little bit more about what that was and is it still a, a procedure used today? Do you know

nals once he popularized his [:

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: this open heart surgery they place a shunt a Blalock Taik Thomas Shun or Blaylock Thomas Tosic shunt B T T shunt in the baby to allow more blood flow Now my baby had flowing in different parts of the heart because my baby had a lot of holes in the heart uh my baby had what's called A P F O which is a Peyton Foramen oal a pda which is a Peyton ductus arteriosis a humongous

V

kind of like a Swiss cheese [:

Boots Knighton: I was just thinking that analogy. Wow. Wow.

Anna Marie Jaworski: Yeah Yeah Well my baby also had what's called transposition of the great vessels And so that's where the two major vessels are switched And normally your left ventricle is your big ventricle and that's the ventricle that pumps the blood to the entire body And right ventricle is a little bit smaller and it looks different because the right ventricle only has to pump blood to the lungs And your lungs are so close to your heart it doesn't have to work as hard The valves between don't ha carry as heavy a load The aorta carries a really heavy load cuz it has to pump blood throughout the entire body Well my child's left ventricle pretty much didn't exist They said it was at the embryonic stage

Boots Knighton: Wow.

Anna Marie Jaworski: a scary thing to hear

Boots Knighton: Oh

body But because my baby had [:

and never was [00:11:00] blue because of all the mixing of the blood but he was yellow he had jaundice So I kept taking the baby back and forth to newborn follow up but even though he was jaundice he was never yellow enough for the Billy lights Had he been yellow enough for the Billy lights they would've put him under the lights They would've seen that he wasn't peeking up because his body was working hard just to stay alive then we would've known but he was never that yellow And so when I was expressing concern about him being yellow they said ah it's just breast milk jaundice So they didn't worry about that when I was worried because he didn't wake up crying To eat or with a wet diaper They said oh he was born three weeks early He still thinks he's inside of you When I complained to the lactation consultants that he wasn't nursing that he would fall asleep after just a few minutes they said the same thing Oh he's just a lamb He thinks he's still inside of you [00:12:00] And so every single time I voiced a concern or my husband voiced a concern they just treated us like we didn't know what we were talking about even though I had a three-year-old son at the time So it's not like this was my first baby I had been through this before and when I objected that way they said Oh.

every child is different Don't compare him to your other son So I did not feel very validated And the worst part was that I was seeing doctors at the same hospital where my husband was a I didn't think I could go to any other hospital and be treated any differently Now I know better now I would go to another hospital in a heartbeat but I thought where would we receive better care than the place where my husband is working

Boots Knighton: I am just struck by that and through all my conversations I've had with fellow heart warriors and heart uh caregivers, I hear stories similar to this more times than should be allowed and, and

Anna Marie Jaworski: I know right

Boots Knighton: [:

I would like to think that people just wanna assume the best of their patients and like they genuinely wanted to assume your baby was just a lamb, but it's like there comes a time where you really have to listen to the patient, to the patients because the patient knows best. Okay. I'm like enraged.

m so they wouldn't make this [:

cried

out Alex's story I just was sobbing thank goodness I could touch type sobbing As I recalled all the different details that involved us going through the diagnosis and going through the first surgery and the second surgery and where we were then I mean at least I had a happy ending We're so lucky that we had a happy ending and I typed everything up used my dad's printer printed it up put it on his recliner because I knew when he got up in the morning that was the first thing he did was grab a cup of coffee and sit in his recliner and I had stayed up all night working on that So I was sleeping in and when I woke up the next morning there was a little post-it note I really wish I had saved it There was a little post-it note on the paper that said now your book is done

Boots Knighton: Aw,

my dad to do that for me So [:

Boots Knighton: and let's, let's review those again for our listeners. Okay. So,

Anna Marie Jaworski: the rapid breathing

Boots Knighton: Mm-hmm.

here when there's not enough [:

Boots Knighton: okay.

Anna Marie Jaworski: we don't say him we say her

Boots Knighton: Mm-hmm.

go Alexander told me that he [:

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: if you hear me say Hope or Alex it's the same person I only have one child with a heart to fat

Boots Knighton: Got it.

Anna Marie Jaworski: My older son does not have any heart problems

Boots Knighton: Mm-hmm. . And that's probably a whole separate podcast of, of having a child transition. Yeah. Um,

Anna Marie Jaworski: actually had hope come on my show and we talked about that

Boots Knighton: oh, great.

Anna Marie Jaworski: it was really interesting and I'm super excited Boots you're the first one for me to say this too Publicly Ho Hope and I are going to write a book together

Boots Knighton: tell me more.

outlined a book so I'm super [:

So

yeah we're making progress on that and our hope is to release it next year during Pride Month

Boots Knighton: Oh, that's beautiful. Wow. And I, you know, I'm hearing so much heartache and fear of losing. Alex so young and that the rage of, of the, at the medical community that you had built so much trust in. And then to hear that hope now hope has, come into her twenties, right? And is living is, is thriving and doing well.

Like that's amazing. But I, I wanna go back and walk through that journey a little bit more if you're willing,

Anna Marie Jaworski: Sure

more than two, based on past [:

Can you walk us through like the timeline?

go into more depth than that [:

how Alexander was doing as he was growing and as he was becoming more cyanotic So after the first surgery his saturation levels were in the eighties For a lot of people that would be a huge red flag that there's something wrong to just be saturating having an oxygen saturation in the eighties for him it was normal and because of the way they were his heart that was okay His body was naturally producing [00:23:00] more red blood cells he had to take aspirin because he was at risk for having a stroke with having extra red blood cells in his

Boots Knighton: his body was adapting.

Anna Marie Jaworski: his body was

Boots Knighton: Yeah.

r life expectancy was greater[:

so I taught to my child's surgeon I said why is it that I'm seeing that these babies who have transplants are living longer And he said well Anna did you look really closely at what they said Because it's it's actuarial And I said I wondered what that meant I'd never seen that expression before He said that's what they project When you look at the research that's done on a bidirectional glen and a Fontan those are real statistics Those are the statistics of the people who actually really did But for the heart transplant we have so few patients who have had them for hypoplastic left heart that they're just projecting how long these children will live and he said let's leave the heart transplant as the last ditch effort As long as Alex's heart is strong enough to sustain life [00:25:00] let's work with his own native tissue When you have transplant you get a whole other bag of problems along

Boots Knighton: Oh yeah.

that they're not developing [:

Boots Knighton: my gosh.

Anna Marie Jaworski: so that sounds interesting He said yeah but he said you know what We're gonna do what's best for Alex You need to trust us A bidirectional Glen is the way to go We have like a 90% success rate with a bidirectional Glen Let's do the bidirectional Glen And the bidirectional Glen is also called a Hemi Fontan So the plan was for them to go in when we saw he was too cyanotic and they would take top part of his body and they would connect it so that the pulmonary the the pulmonary arteries and the Wait I'm sorry let me get my book I

Boots Knighton: Sure.

Anna Marie Jaworski: this in a long time

g that I'm just, that I just [:

Anna Marie Jaworski: Oh absolutely After Alexander survived the first surgery they really made it sound pessimistic that he was going to first of all they made it sound like he wouldn't live to the surgery doctor's appointment was on a Friday and we were in San Antonio next morning Well it was a weekend and the doctor did not wanna use weekend staff to operate on Alex and he was in congestive heart failure by the time they diagnosed the condition And so his heart went from the center of his chest all the way over to one side It was huge so congested and so swollen And they said we're gonna use some drugs to try and pull some of the fluids off to give his heart [00:28:00] a rest Because they had been working so hard he was intubated were feeding him through a feeding tube It was heartbreaking because I had been nursing him and even though I kind of felt like I was torturing him the way that I was nursing him was used to nursing my baby and all of a sudden I had to use a breast pump I had never done that before So all of that was really hard But then when he did survive the surgery they said you know.

m holding him and he started [:

intensivist came in and I said Alex wants to eat And they said oh no it's too soon It's too soon my breasts are starting to leak right

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: half your baby starts crying Your breasts get prepared to to feed them And I I could feel myself You know my body reacting to my baby's crying And I said no I I really think I need to feed him Oh.

no no it's too soon You don't want him to vomit You don't want him to to take in And then he vomits and that's really bad He just had open heart surgery and as soon as he left the room I peeked around the at this time we were all in open base They weren't actually rooms There was just a little curtain So I peeked around the corner and I saw the surgeon down the hall right I ran down the hall and I said Dr Calhoun Dr Calhoun Alex wants to eat Alex is crying to eat And he goes feed the boy

Boots Knighton: Oh

ie Jaworski: back to the bay [:

I

put my baby to my breast and he latched on and he sucked with such vigor I'm gonna start crying He had never ever nursed that way I just Obviously I just started crying because I thought knew something was wrong All those days that I had been nursing my baby I knew something was wrong and I really wish that I had trusted my mother's intuition because he was a different baby and it we weren't even a week out He was a different baby and when they saw that he could nurse and he was producing urine I never realized how important urine was until the nurses were waiting after

Surgery

yeah it was so exciting And [:

Boots Knighton: Mm-hmm. . Mm-hmm.

Anna Marie Jaworski: another symptom is failure to thrive where they're not gaining enough weight she said if he doesn't start gaining enough weight the doctor's not gonna give you an option You're gonna have to nursing And I said okay well how long do you think I have And she said well let's just take it day by day so by the time Alex was three months old we were able to go back home before then And I I had hungry baby I had little boy who was decided to make up for lost time And

n my cardiologist nurse said [:

Boots Knighton: Oh my.

rolling over He was sitting [:

So He was even starting to say words We were getting closer and closer months were going by I was working on the book I was learning so much more about these surgeries That's why I asked the doctor maybe transplant and I was being told no So with the Hemi let's get back real quick

Boots Knighton: Yeah. Yeah. Mm-hmm.

Anna Marie Jaworski: They they attach the superior vena cava to the pulmonary artery seems

Boots Knighton: it. All of this is magic to me. Anna

Anna Marie Jaworski: So that's that's a big

Boots Knighton: Yeah.

ttach that They use a baffle [:

heart

acts like a two chamber pumping heart kind of like a frog's heart instead of the heart actually pumping blood to the lungs doesn't do that with the connections that it has it actually travels to the lungs based on the child's heart pressures which to me if that's not a miracle I don't

Boots Knighton: Wow. Wow.

Anna Marie Jaworski: entire purpose of the heart is to pump blood to the body

Boots Knighton: Mm.

avels passively to the lungs [:

Boots Knighton: Well and Anna, if I could interrupt, it's not like you were set up to trust doctors at the start with this child.

Anna Marie Jaworski: Yeah Yeah Thank you Thank

Boots Knighton: Mm-hmm.

months of Alex's life But to [:

Boots Knighton: Mm-hmm.

or who worked on my child to [:

with

Apparently that's not common [:

Boots Knighton: Mm-hmm.

econd surgery the only thing [:

Boots Knighton: Yeah.

Anna Marie Jaworski: days And he watched him a little bit longer and he said he should be okay until

Boots Knighton: Wow.

Anna Marie Jaworski: [:

Boots Knighton: Oh yeah.

iatricians and just share my [:

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: to constantly tell us that everything we were observing was wrong So anyway let's fast

Boots Knighton: Yeah. Yeah. Mm-hmm.

Anna Marie Jaworski: growing

may not sound great but hey [:

But

runny nose I took him to the [:

Boots Knighton: and what, which hospital was this at?

d they told us how long they [:

anything

to panic

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: And finally a nurse came out and she said Anna you know Dr Calhoun said that he might do something else And I said yes And she said he's doing something else and he'll be out to talk to you when it's done

Boots Knighton: my gosh.

ust trust the doctor like my [:

Boots Knighton: Oh my gosh.

eart said I believe Alex can [:

He said I don't know any other babies this age have had this procedure said but I believe in Alex And you know I knew if that great man believed that my kid could make it I could believe that he would make it he did he surprised everyone but not without a lot of complications He had serious ple effusions which is very common with a fontan procedure That's where you have fluids that are coming out of your plural area And that went on way longer than it did with the first surgery Went on for two weeks But uh the other problem was that his was paralyzed vocal cords were paralyzed So my baby who went in say mama bye bye dad Dad came out and had no voice whatsoever We would see him cry and you couldn't hear anything And he was on he was completely [00:50:00] oxygen dependent because of his diaphragm And his surgeon told me this could be temporary or it could be permanent He may have to have an oxygen concentrator for the rest of his life but we really hope it's just a temporary problem And a his diaphragm will come back But before we could go home we had Secure an oxygen concentrator for our house And then we also had a portable oxygen concentrator for in the in the car

Boots Knighton: And so how long were y'all in the hospital before you were sent home? With the oxygen concentrator?

Anna Marie Jaworski: two weeks It felt like a lot longer than that

Boots Knighton: Yeah. Yeah, I bet.

Anna Marie Jaworski: two weeks which is short I've talked to so many people who will be in there for months and the

Boots Knighton: Oh, wow. Okay.

y is and it's a testament to [:

Boots Knighton: had his diaphragm and his vocal cords woken up

Anna Marie Jaworski: within a

Boots Knighton: within a year

Anna Marie Jaworski: and his vocal cords were completely back to normal the diaphragm healed within a couple months but it took about a year.

before his vocal cords were completely repaired

ts Knighton: how long was he [:

Anna Marie Jaworski: for a couple of a couple of extra months

Boots Knighton: Okay.

Anna Marie Jaworski: It was like two or three

Boots Knighton: Oh, fair enough. Considering.

said if just gimme something [:

Boots Knighton: oh my gosh.

Anna Marie Jaworski: I said God that is not the sound I was talking about I was I couldn't believe it I said my kid sounding like a kid in this is not the sound I was talking about but you know what

Boots Knighton: It was a starting point.

Anna Marie Jaworski: what you get This is a starting point This is what you get

So

lation of air that's the one [:

Boots Knighton: Okay.

train his brain how to speak [:

Boots Knighton: Mm-hmm.

t'll help somebody else okay [:

Boots Knighton: You know, listeners, as we've been having, Anna and I have been having this conversation. there's moments I haven't been able to breathe cuz it's like I'm going through all these emotions of awe and wonder of the human condition and how we can survive seems to be un like, what should be in our brains, like this unsurvivable situation.

Alex's parents and how they [:

Anna Marie Jaworski: Uh you are so sweet to say that it's it's funny but I really feel that God gave me Alexander in a mission

Boots Knighton: Well, it that's clear.

o communicate and he couldn't[:

Boots Knighton: Joseph. Meaning Joey? Mm-hmm.

Anna Marie Jaworski: Yeah Joey Joseph

Boots Knighton: Mm-hmm. .

Anna Marie Jaworski: call yeah

Boots Knighton: Mm-hmm.

y really helpful But despite [:

Boots Knighton: Oh,

Anna Marie Jaworski: and it was just

Boots Knighton: mm-hmm.

Anna Marie Jaworski: It was a very milk is a very iconic sign the thing that was really cool was I remembered reading about the the development language development of children who are hard of hearing and deaf and they talked about how when they first learned sign language some of the quote unquote mistakes they would make So to make an American sign language to make the word mother you have your hand in like a five position and your thumb touches the bottom of your chin but Babies who are hard of hearing are deaf when they're first learning or babe peering children of parents who are deaf who are signing all of the time it's very common for them to take their pointer finger and put their pointer finger on their chin And that's Mama and Joey did that I was like oh my gosh my kids developing language

Boots Knighton: Mm-hmm.

t of hearing And so that was [:

Boots Knighton: and I love the name of your nonprofit.

Anna Marie Jaworski: Thank you Heart Unite the Globe

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: Carl who is the lawyer that I consulted when I decided to put together a nonprofit said to me you're picking the name for your nonprofit you want it to have an acronym that is fun and easy to remember And so our acronym is hug

Boots Knighton: Yeah

Anna Marie Jaworski: is easy to remember Everyone needs a hug

Boots Knighton: Yeah.

Anna Marie Jaworski: Yeah.

that's why we chose Heart the Globe so that we could give everybody a hug if everybody needs a hug it's someone in a heart community right

t, heart to heart with Anna, [:

I don't have a, a quality connection. And we ended up talking for like, almost an hour, and it just felt like my mom is deceased. And it was just like, I, it was just such a healing conversation. And I mean, that's the whole point of my podcast is that when people listen to each episode, they find hope and healing.

And Anna feels like a hug. , so does her organization. And so Anna, how do we find Heart Hearts Unite the globe? How do we find you on the internet? And tell me a little bit more about the mission and and all of that

an introvert a very serious [:

those commonly occurred together She had a grandma seizure and that's what ended up killing her taking her life [01:09:00] Michael is a super quirky fun guy So I had him as a guest on my show and I realized in interviewing him a bereaved father the way that he was able to communicate and still be so supportive and so uplifting spite of suffering what I considered the worst trauma a parent can go through and that is losing your child knew he would be the perfect host for a podcast So I asked him if he would do it and he said he would do three episodes on one condition And the condition was a mutual friend of ours Nancy Jensen he said has to be involved She has to be the first guest on my program And I said okay I'm looking for someone to do a whole year 12 episodes And yes you can have Nancy and he said well we'll do three and we'll see what happens here we are seven years later

Boots Knighton: Oh my gosh, .

Anna Marie Jaworski: a producer

Boots Knighton: That's so fun.

rski: a producer We have not [:

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: amazing We did change our focus At first it It looked like we were only going to talk to heart families who had lost a child So Nancy was the first episode was a was a guest on the first episode Her daughter Jessica passed away before Michael's daughter Lielle did And that's how they became much much closer And when things were looking really dire Michael reached out to Nancy and she kept all of the rest of us in a heart group apprised So he wasn't having to say over and over again what was going on The two of them would talk and then she would let the rest of us know what was happening So she was a touchstone for Michael That was really really crucial at a at a critical time in his life So she's you know the three of us are family to one

Boots Knighton: Mm-hmm.

ike family and in some cases [:

Boots Knighton: Oh yeah.

art to heart with Michael be [:

Boots Knighton: Can't see that.

Anna Marie Jaworski: they continue to grow

Boots Knighton: Mm-hmm.

her fifties living with ait [:

Boots Knighton: Yes. I can't wait.

Anna Marie Jaworski: has an amazing amazing story to share And then Marta Raquel Montero is

the co-host and she is from Puerto Rico is amazing She's an author is a fantastic heart mom and I can't wait to go to Puerto Rico and meet her That's on my bucket list So go to Puerto Rico just to meet Marta Montana It'll be awesome

Boots Knighton: Wow,

mmon with a foreign language [:

Boots Knighton: Mm.

Anna Marie Jaworski: want it to just be interview based I wanted to do have panel discussions like town hall meetings So half of the year we'll be doing interviews and the other half the episodes will be town hall meetings and our first one will be later this month

Boots Knighton: gosh. That's amazing.

eanna That really feels like [:

Boots Knighton: That just gave me the

on I have not listed my date [:

of Heart Warriors We have made about 50 stories by four over 40 heart warriors sharing different aspects of their life Hope has written and I will tell you all right away hope did not like the title of my book and has been against it from the very beginning But I have the heart of a mother I have the heart of a father and the simplest way to announce the next book was the Heart of a Heart Warrior Yes I.

could have said the heart of a person who was born with a caja or heart defect but that doesn't really

Boots Knighton: just too long. No Mm-hmm.

Anna Marie Jaworski: hopes

is

I am not a heart warrior refuses to let her heart defect define her and good for her

Boots Knighton: Yeah.

who feels that way so let's [:

Boots Knighton: Oh, hilarious. Well, I mean, and that's just how it is. All of us have such a unique journey and it's gonna resonate with someone, and it's okay that hope doesn't wanna be defined, but yet your other friend does. Like, that's just, that's just where we're at on any given day.

Anna Marie Jaworski: had multiple open heart surgeries and just recently had a heart transplant So it's understandable why he feels

Boots Knighton: Wow.

Anna Marie Jaworski: he doesn't mean it defines him in a

Boots Knighton: Mm-hmm

Anna Marie Jaworski: I think maybe it would be more popular term is informs

Boots Knighton: Okay. Yep.

is is the word that he chose [:

Boots Knighton: Yeah.

Anna Marie Jaworski: and it he's an amazing individual I just love talking to him Whenever I get a chance to talk to him he has a fantastic story That's the thing is every single person who contributed to my book could write their own book They all have these amazing stories and if you would've told me 28 years ago when Dr Park told me to take my baby home to love him for what little time he had left that someday would be co-editing a book with a heart warrior from Australia named Megan Tones and that we would be putting together an entire book of essays by people born with heart defects I wouldn't have believed it

Boots Knighton: Yeah. I mean, I feel you. Like I

Anna Marie Jaworski: would've given me hope You know it would've

Boots Knighton: mm-hmm. Mm-hmm. .

Anna Marie Jaworski: what I'm hoping this book will do

Boots Knighton: Yeah.

aworski: These are stories of[:

Boots Knighton: Beautiful.

Anna Marie Jaworski: is what this is what I want everybody who's in that waiting room for eight hours like I was I want them to have a book like this where they can read story after story after story of people who have had challenging lives I'm not gonna take away their struggle Their struggle is part of what makes them the amazing people They are your story boots I mean the fact that you did what you did that you lived as long as you did not even knowing you had a heart defect and then almost dying

Boots Knighton: Mm-hmm.

Anna Marie Jaworski: coming out the other end and now producing a podcast of your own to help people That's inspirational It's amazing

Boots Knighton: I can't believe it.

Anna Marie Jaworski: part of the book I'm gonna put together the heart of the Heart of a Heart Warrior two and I hope you will choose to write for that

um, out there conquering the [:

And, uh, listeners, I will put, basically, we just went to medical school in the past hour, , and I will put, I will put, um, all of those terms once I make sure they're all spelled correctly in the show notes. And you will have 8,000 ways to connect with Anna. Anna, thank you

Anna Marie Jaworski: thank you.

so much Can I give you my publishing company's

Boots Knighton: yeah, baby heart, baby heart's. Press. Mm-hmm.

Anna Marie Jaworski: baby Hearts Press is my publishing company and it's baby hearts press.com you

hamber podcast.com, and make [:

Would you like to share your story on this podcast? You can either send me an email at boots the heart chamber podcast.com or you can go to my website and go to the contact link and leave me a message there. There's also a way to leave via voicemail on my website. I'm so glad you joined me for today.

Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.

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About the Podcast

The Heart Chamber
Conversations on open-heart surgery from the patients' perspective
**The name of this podcast is changing on June 4, 2024. Be sure to subscribe so you don't miss the announcement!** Join Boots Knighton every Tuesday for conversations on open-heart surgery from the patient perspective. Boots explores the physical, emotional, mental, and spiritual experiences of surgery with fellow heart patients and health care providers. This podcast aims to help patients feel less overwhelmed so you can get on with living your best life after surgery. You not only deserve to survive open-heart surgery, you deserve to THRIVE!
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