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Resilience in Motion: The Unseen Struggles of Adult Life with Congenital Heart Defects

February 21, 2024 Rita Scoggins Season 19 Episode 437
Resilience in Motion: The Unseen Struggles of Adult Life with Congenital Heart Defects
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Heart to Heart with Anna
Resilience in Motion: The Unseen Struggles of Adult Life with Congenital Heart Defects
Feb 21, 2024 Season 19 Episode 437
Rita Scoggins

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Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it’s an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing.

Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: Survival

The heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope’s inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives.

Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: Survival

Physical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories.

Won’t you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information.

Did you miss hearing Chapter One or the Front Matter of the book? Here are the links:

Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434

Chapter 1: http://tinyurl.com/H2HandChapter1

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

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Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it’s an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing.

Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: Survival

The heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope’s inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives.

Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: Survival

Physical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories.

Won’t you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information.

Did you miss hearing Chapter One or the Front Matter of the book? Here are the links:

Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434

Chapter 1: http://tinyurl.com/H2HandChapter1

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Speaker 1:

It's a privilege not all heart mothers yet to have their children become adults. For us it's a privilege and a blessing.

Speaker 2:

It is a privilege and a blessing, no matter how many minutes, hours, days, years of waste been worrying about them. It is totally a privilege and it is also very humbling. Greetings, friends and welcome to Heart to Heart with Eva. I am Anna Jorski, heart mom to an adult with a single-vental heart, author, publisher and podcaster. I'm very excited to offer you another special edition of the podcast.

Speaker 2:

In this episode of Heart to Heart with Eva, veteran heart mom Rita Spodkins and I will pick up where we left off last week. In the second and third segments, megan Tones and I will continue reading from our new book, the Heart of a Heart Warrior. For those of you who are unfamiliar with the book, this is a nonfiction anthology of essays and works of art by 40 adults with congenital heart defects. Heart warrior Megan Tones and I co-edited the book. For the last two weeks we've been reading from the book for your pleasure. This week, in segment two of the podcast, we'll take turns reading chapter two, segment three of the podcast. We'll be reading the first two essays from chapter three.

Speaker 2:

Last week, my dear friend Rita Spodkins and I talked about our journey of raising children born with funky hearts to adulthood at a time when there were few resources available for parents. Rita's daughter, victoria, is about 10 years older than my daughter Hope. I'll put the link in the show notes. We hope you enjoy this episode. So here we go. In this segment, let's talk about navigating life and death issues. This is something that we have to think about because both of us are getting older. Frank and I have already made arrangements for what we want done when we die. Is this something that you and Robert have talked about or done?

Speaker 1:

We have our wills and all the documents that we need. We keep saying I don't know where I'm going to live when I die, so I don't know if I'll still be living here or I'll be somewhere else. So no, I haven't.

Speaker 2:

I have my medical and financial power of attorney and I have all that and we wrote our will and paid to be cremated.

Speaker 1:

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

Speaker 2:

My mom didn't want to be cremated either, but Joey's in Florida. I don't know where Hope will be, because if she ever gets a chance to get a job in New York she'll be gone, and then Frank and I would be buried here in Texas. There would be nobody to look after the grave, and I don't want them feeling like they have to fly to Texas just to take care of a grave.

Speaker 1:

My parents are both in Arlington National Cemetery, so we don't go unless we're in the DC area.

Speaker 2:

My sister and I go visit my mother's grave every year around her birthday. We make it sisterly time, we take a few days and clean the grave site and we talk to her and sing her happy birthday. So have you talked to Victoria about a medical power of attorney or?

Speaker 1:

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

Speaker 2:

When did?

Speaker 1:

she get all of that. She just got that recently. She decided it was time.

Speaker 2:

I talked to my kid. I was about that before Hope's last surgery. Hope had surgery at 17 and Joey at that point had a girlfriend. They weren't married yet and I said you really should have your medical and financial power of attorney and your will made just in case something were to happen. Both of my children did that then and they say that you should look at your will and all of your important papers every time you get your driver's license renewed, that that's a good rule of thumb to you.

Speaker 2:

So I encourage my kids to do that. And then, of course, anytime you have a major life changing event, like Joey and Ashley had Rowan- I know we hadn't redone ours until maybe a couple of years ago.

Speaker 1:

The kids were still going to our relative. Something happened to both of us. It was like, well, I don't think they'll want you anymore.

Speaker 2:

Things have changed Well, Rita. Today people talk about adulting and I think that making those plans for what will happen when you're gone are part of adulting. And in college, do you think we parents of adults with cajole heart defects need to share with our adults born with CHD's?

Speaker 1:

I did talk to Victoria about getting a will getting power attorney doing those things. I didn't make her do it. That was her decision to do it when she was ready. She's done that. She has a dog. She's a dog mom. Something happens to her. What happens to Shiloh? I love Shiloh.

Speaker 2:

She loves grandma too.

Speaker 1:

She does, so those kind of things that need to be taken pure.

Speaker 2:

I was just talking to one of the members of the CHC podcast I'm the executive producer for that podcast and we were talking about disability. I thought, wow, I know Frank has short and long term disability. Where he works he pays into an account and in case of the war to happen to him he has that as a failsafe. But I don't know if Hope has that. I bet Victoria does, working for the VA.

Speaker 1:

I don't think she does, because that's something I asked her about way, way back, and I think she told me it wasn't available to them. So they must have something else, or their insurance. I'm not really sure.

Speaker 2:

I think that might be a good thing for us to talk to them about.

Speaker 2:

So, for those of you who are listening, if you have an adult with a CHD and maybe they're applying for jobs, they're getting ready to get their first job and they're looking at benefits and trying to compare which job would be a better job for them. If one job offers long and short term disability and the other does it, all things are equal, you might sway them to go towards the one that offers that disability, because that can really make a big difference in your life, whether you have a hard effect or not.

Speaker 1:

Right, we were talking to some young people not long ago about long term healthcare, where you get a policy in case you need to go to a nursing home. Is that something that's very important too?

Speaker 2:

Yeah, and the younger you are when you start a policy like that.

Speaker 1:

The two bird is right.

Speaker 2:

Now I don't know if they promise that it's never going to go up, I bet it still goes up as you get older. Probably yeah, but it's a lot more expensive if you wait when my dad needed round the clock care.

Speaker 1:

We discovered how expensive it was for Robert and I opted to take out the long term healthcare policy.

Speaker 2:

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

Speaker 1:

My dad stayed at home and we had caregivers. My mom was not able to do everything that he needed. She was elderly my dad was 91 when they got the caregivers. My mom was in her late 80s and there just were a lot of things she couldn't do. Now she didn't like having the caregivers around, but she needed them because it was just too much.

Speaker 2:

Right For her to be able to lift your dad or do anything like that would have been really difficult.

Speaker 1:

Exactly.

Speaker 2:

And apparently longevity runs in your family. If your dad was in his 90s, how old was your mom when she passed Almost?

Speaker 1:

90. Wow, wow, we're not short of 90.

Speaker 2:

Wow, well, it sounds like it was a good decision for you to buy that additional policy. Yeah, I think it's hard to talk to our kids about things like this.

Speaker 1:

I know Whether they're hard-hungry or not, don't you? Yeah, I don't want to talk to the one that isn't hard-healthy, I don't want to talk to the one that isn't hard-healthy. I know Victoria thinks about that, so to me that makes it oh, you don't want to tell your kid, okay, cuz you have a heart defect. You're probably gonna die sooner. Hmm, I'm sure she probably thinks that, but we don't know. We don't know who's gonna die.

Speaker 2:

We don't know. That's the thing that we don't know, and I know. With Joey I worried a lot more about him because he is a little bit more Impetuous and a little bit more reckless not so much now that he's married and has a child before that yeah, before that I was more worried about Joey.

Speaker 2:

Yeah, I think the thing that makes it uncomfortable for me to talk to you some of these topics with hope is that I Don't want her to think oh, you are going to become disabled. Oh right, you are going to need this or that, not as part of time is it.

Speaker 2:

Yeah, this is part of that adult thing. All adults really need to think about this and prepare for eventualities or possibilities, because the more prepared you are financially, the less devastating that is. It's already devastating when you have a car accident or if something should happen and you'd become disabled. That's already devastating. But then to add on top of that financial worries that least if you're doing this planning Financially, you've got things taken care of. So if something horrible happens, at least you don't have to worry about the financial end. And I think for a lot of people it's the financial aspect that is the most daunting and the most stressful when you're going through something bad.

Speaker 1:

No, it's like with the insurance. There were times when Robert was going from one job to another and that then there was a waiting period when pre-existing would be covered.

Speaker 2:

So that was always a scary time, you know right and I remember it used to be pretty long, depending on the policy. It could be six months to a year before you were allowed to have an incident that was related to the pre-existing condition, right? And when you have a child with a heart defect, that's a long time especially since most of our kids had to be seen at least annually for echoes and EKGs, that some of those tests, especially the echoes with Doppler, yeah, very expensive.

Speaker 2:

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

Speaker 1:

And Victoria was always seen at least every six months. The very least right. So was to yeah luckily, the time that it happened she was very stable, so we didn't have anything that the doctors had to say it was pre-existing, so that worked, but still it's something you have to think about, there's so many things you have to think about as adults.

Speaker 2:

I don't know. I thought it would be easier when my kid became an adult and I think it's some ways it's harder.

Speaker 1:

No, I agree, I think it's harder. Yeah, can't tell them what to do anymore, for I know they don't have to listen to us exactly.

Speaker 2:

That's a hard part, darn it. I've done all this research and you're not going to take my advice exactly exactly.

Speaker 1:

I've lived so many more years than you have. I know stuff.

Speaker 2:

Yeah, they don't think we know anything.

Speaker 1:

Well, that's not true I?

Speaker 2:

know and hope are very sweet and I do think that they pay credence To what we know. And I will say this for my daughter anyway she's very headstrong. That has served her well as a heart warrior. She has needed to have that very fierce Personality. I don't like it when it's fierce and she's not fighting for what I believe in.

Speaker 2:

Exactly against me, you know however, I will say there was once that I really felt that she needed a certain device and she disagreed with me, the the syphorously. And now, looking back, I think she was right and I'm glad that things worked out the way they did. I'm glad that as much as in my heart I was dreading it and I wasn't happy and I was scared, quite honestly, I'm glad that she can be such a good advocate for herself and I know Victoria is also a very good advocate.

Speaker 1:

Yes, she is herself. She's very stubborn too, but, like you said, I think that's definitely what a heart warrior needs to be stubborn and headstrong. That's part of their strength.

Speaker 2:

It is part of their strength and we've been lucky to be their mothers.

Speaker 1:

Yes, we have. It's a privilege. Not all heart mothers yet to have their children become adults. For us, it's a privilege and a blessing.

Speaker 2:

It is a privilege and a blessing, no matter how many minutes, hours, days, years of waste been worrying about them. It is totally a privilege and it is also very humbling. We owe a huge debt of thanks to so many different people the doctors, the nurses, the techs, the pharmacists.

Speaker 1:

The list goes on and on the doctors, the parents that were brave enough to let their kids have the surgeries before they were.

Speaker 2:

You know totally Well they were still very experimental. I know we were told that HOPE's procedure was considered experimental in the 90s. So certainly people before that were also dealing with these experimental procedures. And you're right. If we hadn't had those parents and heartwarriors willing to undergo very uncertain futures, our children's future may not be what it is today.

Speaker 1:

Something we have to be very grateful for.

Speaker 2:

Absolutely Well, rita. As always, I enjoyed talking with you today. Thank you so much for coming on the program.

Speaker 1:

Thank you for having me, aglombe Enno. It's always a pleasure. Well, friends stay tuned.

Speaker 2:

Next we'll listen to Amiga Times and his Wee-Wee from the Heart of a Heartwarrior, Volume 1 Survival. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 3:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to annajuorski at anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 2:

Chapter 2 how my CHD Defines Me. When I decided to put together a book of essays by adults with congenital heart defects, I asked my heartwarrior to contribute. I had tentatively named the book the Heart of a Heartwarrior and I asked for an essay. I'm not a heartwarrior. I'm not a survivor or a thriver either. Right about that, I said. I said that not all heartwarriors perceived themselves as such and that in the 27 years I'd been a member of the congenital heart defect community, those terms heartwarrior, heart survivor and heart thriver were fairly new. There were other people who felt the same way my heartwarrior did, and they needed their views validated as well. With reluctance, my heartwarrior wrote an essay, received feedback, revised it and finally got it into a form that everyone was satisfied with.

Speaker 2:

During the four years that we have been working on this book, my heartwarrior has been going through a more important transition. My heartwarrior was born Alexander and lived as a male for 27 years. In January 2022, alex informed Frank and me he no longer identified as a male. Hope is a new name. My transgender daughter prefers to go by. She doesn't want to be identified by her cardiac condition. She wants people to know her for who she is, aside from her heart condition, but she's one of the lucky ones. Yes, she's had three open heart surgeries, but she's been able to fully recover and she leads a full life, which includes full time employment, living alone in an apartment and a life full of friends, family and activities.

Speaker 2:

Not everyone born with a heart defect is that lucky. Some people who are born with heart defects are not privileged enough to lead the life they wish they could. Low saturation levels handicap them. They have to adjust their schedules because of some drugs they must take, they're recovering from complications from some cardiac procedure or they simply lack the energy to work full time. Sometimes people's hearts give out completely, forcing them to make really tough decisions. Should they opt for an assist device? Should they have another surgery or procedure? Do the risks outweigh the benefits? Should they opt to be put on the transplant list? For some people, their heart dictates their lives, whether or not they wanted to. One term I've learned from working on the Breved but Still Me podcast is post-traumatic growth, and it is a term that means growth from a traumatic experience. I believe I've experienced post-traumatic growth over the years by working with people in the CHD community. Some adults with CHDs also experience that kind of growth. In this chapter you'll meet my daughter, but you'll also meet two other heart warriors. Jason Crutchley had to make some of the hard decisions I alluded to earlier. He tells us how his heart defect has to find him. Christie Silman, while not needing a heart transplant like Jason, has faced other trials in her life and from some of those experiences she has grown into a remarkable woman, mother and nurse.

Speaker 2:

Not a Heart Warrior. By Hope Jaworski. I could be a warrior, but what does it mean? Why do some people consider themselves warriors, another's don't? I'm not a Heart Warrior, but I have been a warrior in Dungeons Dragons. So why one and not the other?

Speaker 2:

Why are we stopping already? Phil the Barbarian asked there's still sunlight. We can keep going. Sure, but this way we get to sleep in a bed. Before reaching a forest, I pointed out Boring. He grunted as he looked longingly toward the cursed forest, hand resting on his giant axe. I searched my cloak for a pouch of money, tossing him one full of copper coins. Here. Go drink to your heart's content, I suggested, smirking as his eyes lit up. We'll go buy supplies and meet you at the inn later. He headed off merrily, accompanied by Randy R Paladin to make sure he didn't start a tavern brawl for the fun of it.

Speaker 2:

The wizard, the cleric and I went to the marketplace spending our meager savings on what food and equipment we could afford for the upcoming journey. Just one last adventure, the wizard lind aside, then we can retire. Are you ready to live the rest of your life in peace? I asked no more running around finding monsters and fighting for your life? Absolutely. She nodded emphatically. Someone else can take care of monsters. We've done our part. It's still kind of fun, I admitted, as I examined a collection of daggers, wondering if I could justify buying one. I might be at it for a while longer, not me. She shook her head. Our team's cleric nodded in agreement with her. Well, more power to you. When you're living it up in a big city I'll come visit you, I said, forking over a couple of gold coins for the enchanted blade.

Speaker 2:

I wanted Warriors have some agency in the matter. We get to have adventures and face danger on purpose. There's an end in sight, an option to let others take up the torch and carry on with your work. I've never felt that with my heart condition. It's always felt forced on me and every part of dealing with it is just a burden. Not everybody's like that. We all see things differently and uniquely and that's important to understand. Another tree exploded as Linda hurled fireballs. The goblins ran away screaming fill, giving chase. We let him go. He'd make his way back soon enough.

Speaker 2:

The rest of us started putting out the fire before it could spread. How much more of this? Randy asked. There can't be that many more monsters in here. I checked my bag. Eh, there's more, I said. He looked at me sternly. You mean you need to loot more gold from them? Somebody's gotta pay the bills, I said as I examined a dropped sword, wondering if it would be worth carrying around to sell to someone. Besides, we're making a big difference. How many travelers did they ambush and kill? We're making this place safer.

Speaker 2:

The burnt tree crashed to the ground behind us, continuing to smolder. Linda had moved on to another tree trying to put it out before the fire got out of control. As soon as we've achieved our purpose, we should leave them be. Randy said firmly. Violence only gets you so far. I pocketed some more gold coins as I continued searching the bodies to each their own. After all, warriors get something meaningful out of their work, whether it's serving a higher purpose, helping others or just putting food on the table. They can feel they've achieved something, that they're helping, or even just have the right intentions. Struggling with my heart defect isn't about gaining anything. It's just about living. It's survival, nothing more than that.

Speaker 2:

The sun was rising as we left the forest, dragging the troll king's body behind us. The villagers saw our approach and cheered as we entered the gate. I tossed some silver coins to them, grinning as they scooped them up eagerly. Thank you, brave adventurers. The village chief approached us, beaming from ear to ear. How can we ever repay you for this act of kindness? Feeling the weight of the solid gold crown in my bag, I waved away his offer. Don't worry about a thing, sir, I said, shaking his hand. We're just trying to make the world a safer place. Got any more of that good? Ale Phil asked More. Of the village followed us back to the tavern for drinks and a party.

Speaker 2:

The troll king's body was taken to be disposed of, though I'm sure the tusks and some other parts would be turned into trophies. We didn't need it any more. A bigger reputation and some gold were enough. We celebrated until well past sundown the entire village full of life after being freed from the monster's presence. We ate better than we had in weeks and slept soundly in comfortable beds. It was truly the best reward we could ask for.

Speaker 2:

At the end of the journey, a warrior revels in their victory. Chders have such long roads to recovery and not everybody sees an end to that journey. Even those of us that can rest and be at ease know that it'll happen again one day. There are some things in common to the life of a warrior, but to me the difference is stand out more. I'd make a five warrior, especially in games, but I'm not a heart warrior, and that's okay. Everybody should look for what they're good at and then be the best version of themselves that they can be. Hope Jaworski was born in Temple, texas, with a single ventricle heart in 1994. She lived as a male under the name Alexander for 27 years before realizing and accepting that she was a transgender woman. Hope enjoys writing, playing tabletop games with friends and 3D printing. She worked in healthcare for eight years.

Speaker 4:

How my CHD Defines Me by Jason Crutchley. All of us are defined by what we are born with. We're a person born with a congenital heart defect. That is certainly true. However, it's how it defines us that makes us all different.

Speaker 4:

In 1976, I was born with atrial septal defect, transposition of the great vessels, subaortic stenosis and pulmonary atresia. My mother was told I wouldn't make it past my first hour. After several hours she could take me home. I continued to survive for another six weeks when I had my first procedure, called a pulmonary banding. Again, the odds were stacked against me and they expected me to only have three good years. At age six I was the first child at UCLA to undergo the Fontan procedure with a 2% survival expectancy. Years later I had several episodes of SVT in which cardioversion was the only treatment I could get. At 21, I had a lateral tunnel conversion, revision of the Fontan. Three pacemaker surgeries had followed by the age of 23.

Speaker 4:

Because of all the help I received as a child, I knew my mission. My calling was to help others. I recall, shortly after my Fontan surgery, telling my mother I wanted to be a pediatric cardiologist and always thought I couldn't wait to get my license plates for my car which would read I am a doc. I later decided maybe I wanted to be a police officer or firefighter, or even get into the military. However, because of my heart conditions, I realised this could never come to fruition.

Speaker 4:

In 2005, I recall watching the horrific devastation left behind by Hurricane Katrina. As I sat down to eat dinner with my family at our dinner table, I couldn't stop thinking of all my fellow Americans who wouldn't be able to enjoy a hot meal on their dinner table with their families and my heart just sunk. I knew deep in my soul that I had to do something, but didn't know what or even how to help. The following morning, the American Red Cross was raising money during a telethon for the victims of Hurricane Katrina. Before being interviewed, the Red Cross worker asked for 250 volunteers who could immediately be deployed to the affected areas of Katrina to help. I knew at that exact moment that is how I could help. With no hesitation, I called the American Red Cross. After getting clearance from my cardiologist and several gruelling hours of training, I found myself on my way to help the victims of Hurricane Katrina as an American Red Cross disaster services volunteer Finally my chance to give back to others what I was given, throughout my life, a fighting chance.

Speaker 4:

My deployment brought me closer to what I had always wanted to achieve in this life. It brought me closer to new friends and a new family. The work was hard, tedious and often overwhelming. Hours were long and the days never seemed to end. I would go to bed so exhausted from my day and wake up early the following morning eager to get back to my job. After my two-week deployment, I returned home grinning ear to ear, knowing I made a difference in someone's life. I knew without a doubt this is what I was supposed to do.

Speaker 4:

I have since deployed to nearly every major disaster in the US, except for a few because of my health. Having fulfilled my goal of saving my country, I have helped thousands of others in their greatest time of need. I am defined by my CHD Because of my congenital heart defects. I am defined to help others by offering my time, energy and talents, with just as many skilled and talented nurses, doctors and surgeons have done with me. Jason Crutchley currently resides in Chesterfield, virginia, but his hometown is Sacramento, california. Jason was born with an atrial septal defect, transposition of the great arteries, subaltexthenosis and pulmonary atresia. He is a cancer survivor, stroke survivor and heart and liver transplant recipient, thus effectively giving him two birthdays the 4th of March 1976 and the 28th of January 2019. When he's not working, jason's favorite activity is cruising on the open water, finding myself through service to others.

Speaker 2:

By Christie Silman NP. So why do you want to work as a cardiovascular pediatric ICU nurse, asked one of the panelists interviewers as we began my most nerve-wracking and life-changing job interview. I don't, I said with dead-panned confidence. Their jaws hit the floor. I don't want to work here. This is the place of my greatest anxiety, fears and traumas, but I am compelled to work here. I have a passionate drive to work with children who have congenital heart disease because I too have congenital heart disease.

Speaker 2:

A common debate in the adult congenital heart community centers around when we should disclose our congenital heart disease CHD to other people, especially at our place of work. Many people, rightfully, are concerned that it will make employers wary of hiring or promoting them. Other times people worry that disclosure of their CHD will make them appear weak or incapable. I have found that many adults with congenital heart disease, a CHD, either believe the judgments and severely depend on others, despite being very capable, or they overcompensate it for this judgment by being some of the most ambitious individuals I've known. My complex CHD has drastically shaped who I am today and it's difficult for me to privatize such an important part of my self-identity. However, for the first half of my life I rarely talked about my CHD. I wasn't ashamed of it. I just didn't feel I needed it as part of my identity Deep down. Even when my pediatric cardiologist told me I was cured because you turned 18 years old, I knew that this was never something that was going to go away. I had to incorporate my congenital heart defect within my self-identity. I never thought I'd work in the medical field. I had always had my sights on Hollywood and a professional acting career. However, when my fourth open heart surgery at 17 years old resulted in a paralyzed vocal cord and losing my stage and singing voice, I was forced to reevaluate my life. The messages from the universe all kept pointing me in one direction nursing. It was unexpected but ultimately the best choice. Then I applied for that job in a cardiovascular pediatric ICU. I don't even remember applying. It was almost as if I was guided to it from a higher power. I believe my honesty in the interview gave me that job and I began a wonderfully terrifying career as a pediatric cardiovascular critical care nurse.

Speaker 2:

I found it difficult at first to balance my two identities as nurse and congenital heart patient. I worried that when I shared my CHD with my patients and their families. I was instilling a false sense of hope through my lived testimony. My mom reminded me that there was never anything false about hope. Overall, my lived truth became my strength as I practiced with a personal level of empathy and compassion.

Speaker 2:

Despite my direct involvement with inpatient pediatric congenital heart care, I was still caring for myself, under the false pretense that I was cured of my CHD and that I didn't really need cardiology care. I finally listened to my gut feeling that this was wrong and began seeking care, but wasn't sure where to go. I was too old for pediatric cardiology but felt too young to be with the older acquired heart disease patients in general cardiology. It wasn't until I was pregnant with my son that I discovered the Adult Congenital Heart Association and the field of adult congenital cardiology. I cried tears of joy as I read about these physicians who had undergone specialized training to care for adults who had previous congenital heart surgeries, many with outdated techniques, while learning about the long-term consequences of living our entire lives with abnormal hemodynamics and scar tissue within our hearts. I was fascinated with the research being done in this field, from both a medical perspective and a personal perspective, as the newest medical subspecialty in 30 years. Adult congenital cardiology has a unique opportunity for discovery that feels endless.

Speaker 2:

I began immersing myself in the field and patient advocacy organizations to try to find a place within the community. As fate should have it, I was introduced to Dr Susan Fernandez, the Program Director for the Adult Congenital Heart Program at Stanford, at a national conference. Dr Fernandez's expertise, presentation and passion for the care of ACHD patients immediately impressed me. I asked her advice on how to combine my passion for ACHD care with my career and she recommended I apply for an upcoming nursing position with her program. Dr Fernandez recommended that I not speak about my CHD during the interview process and rely solely upon my professional experiences to exemplify my candidacy for the position. I found it impossible to keep hidden as each interviewer asked me why I wanted to work in the field of adult congenital cardiology and ultimately disclosed my truth. It is what makes me who I am, and to hide it feels deceitful and wrong. I've been the nurse coordinator for the adult congenital heart program at Stanford for nearly five years and I'm preparing to leave in just a few months to return to school and train as an acute care nurse practitioner. I'm uncertain of where I'll be practicing once done with school, but I know I will work in adult congenital cardiology. I've found my calling and truly can't see myself doing anything else.

Speaker 2:

Throughout my career as a nurse I have strived to remain mindful of how and when I disclose my CHD to my patients and their families. I have lived by the tenant that if it doesn't serve to strengthen the therapeutic relationship, bring about a higher sense of empathy or provide relatability, then it isn't necessary to share. I never want it to be about me and maintain the focus of my interactions on my patients' lived experiences. I've also struggled with comparisons. I've lost patients with similar diagnoses as myself. Patients struggle with fears and terrors that I can relate to. I have yet to undergo a major cardiac procedure since becoming a nurse, but I know it's in my future and I hope I can navigate the experience gracefully.

Speaker 2:

The patients who have taught me the most about resilience live in peaceful acceptance of the natural fear associated with living with CHD Enduring greatly, dr Brunet Brown states, because true belonging only happens when we present our authentic and perfect selves to the world. Our sense of belonging can never be greater than our level of self-acceptance. Through my career I've learned to find a partnership with my CHD and have found a level of self-acceptance that I never knew was possible. I am a nurse living with congenital heart disease and I have found myself through helping my fellow CHD warriors. Christie Sillman was born in September 1980 with Tetralogy of Fallot, with pulmonary atresia. Her hometown is Sacramento, california. She is married to Steve and they have a son named Noah. Christie is an adult congenital heart disease practitioner.

Speaker 3:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 4:

Chapter 3 being Active with CHD. I never thought I would write the introduction to a book chapter about being active with a congenital heart defect as I didn't even like sports video games, except for Mario Kart. But here I am. At school I dreaded physical education and sports days as I felt like my heart defect was on show through the entire school. One time I was so far behind the other kids in the race that the teacher fired the starting gun for the next race. Before I knew it I was lapped by not one but two groups of kids and I managed to lose two races at once. I still got us thicker, but I believe that incident started my hatred of competitive sports. Fortunately, in my old era age I have learned that the best competitor is yourself and I now work towards improving my fitness.

Speaker 4:

The first two essays are about finding new lifelong pathways to enjoy exercise and sports when complex CHD impede your first choice. Laurie Hill and Michael Hills no relation. Both had big dreams when they were young. Laurie are becoming a physical therapist and Michael are hockey player Undeterred. Laurie shifted her interest towards researching the malformed heart's response to exercise and Michael found his passion for sports in baseball, watching hockey and competitive curling Sports requiring both skill and endurance. Today, both Laurie and Michael are studying towards Koreans in health and sports.

Speaker 4:

The other two essays are about exploring physical activity via other interests. Alicia Lynch, who has complex CHD, started experiencing arrhythmias just after finishing high school. Her symptoms pointed to a need for a Fontaine revision, which was a shock for the young graduate. However, alicia found that the surgery opened up new opportunities for her, as she joined a dance group at college and performed in several shows. The last essay is about a trip to Egypt I took with my husband shortly after I turned 30. While almost all the insurance companies fell to be a liability, our tour guide believed in me and worked tirelessly to create the trip of a lifetime. While I was no Lara Croft, I was grateful to have the experience of climbing among such ancient monuments. I hope you enjoy these essays and that they encourage you to find new ways of being active that align with your goals and interests.

Speaker 2:

For the love of exercise by Laurie Hill. The icy icy wind blew through my hair and my heart was pounding in my ears while flipping around in my chest. As my friend and I ran in from recess on one of the few winter days Houston had that year, we had missed the five-minute warning bell and barely heard the time to go in bell. The third grade teacher on duty, who was not aware of my heart condition, yelled Hurry up, recess is over. Afraid we would get in trouble, we decided running was the only option. When I got back to the classroom my teacher looked at me then quickly told a student Lead the class into another classroom. While she tried not to panic at the close to blueberry shade of blue I was, she slowly hurried me to the school nurse's office. Sit, lay down, take some deep breaths and cool down, said the obviously scared nurse. She helped me pull off the jacket. I was now sweating buckets under. She knew I just need a time.

Speaker 2:

That day I decided I hated active physical activity, despite the fact I had loved trying dance, cheer, soccer and basketball my favorite. Through the years I was done. For the rest of elementary and middle school I was the artsy academic really diving into the wonder of science. In eighth grade I learned about high school athletic training. The program would give me an opportunity to learn basic anatomy and hands-on experience in treating and preventing athletic injuries. The athletic part made me leery. I knew it would not include any running, but I was nervous. Thus far I had stuck to my conclusion that exercise was detestable. I was afraid that I could not physically or mentally do it. The next time I was encouraged to exercise was the day after having my second open heart surgery that summer.

Speaker 2:

In a dazed state over the beeping of machines in my cardiovascular intensive care unit CVICU room, I heard do you want to try to stand and move to a chair from a bubbly physical therapist PT that had just walked in. I just had heart surgery and I am extremely sore. Of course I don't want to move. I thought I knew I did not have a lot to say and to matter. So I obliged Swing your legs over and scoot to the very edge of the bed. She said Good, now I want you to push up as hard as you can to lift your body. To my surprise I rose off the bed and into a somewhat standing position with only a little help. Great. Now let's turn, she exclaimed. Guide with your feet, then let your hips follow.

Speaker 2:

Once I was lined up with the chair, I plopped down in exhaustion. We've got to get you using that 85% oxygen saturation as officially as possible, the PT said when she returned that evening. Follow my lead. She said Big breath in. We breathe in Good. Now purse your lips. She tightens her lips and only partially opens them to show and breathe out through your mouth. I take a couple of these breaths on my own, as she tells me. This technique does not allow you to release as much carbon dioxide to trick your body into taking more deep breaths. Not only will this help keep oxygen levels more stable as you walk, but it will also help you bring them up faster when they do drop. To practice, we went out for my first stroll Five arduous steps to the door of the shoebox size room, two steps out and back.

Speaker 2:

Once back in bed, while being reattached to numerous CVICU machines, I stared straight ahead, thinking I hated walking before, but I could easily make it a hundred yards with minimal effort. Now I can barely hobble a couple of feet without feeling worn out. You just had made your surgery. My PT nurse and my parents echoed it will get easier. They were right. The next morning I walked a half lap around the ICU. That night I made a whole lap. The next few days I was able to make three laps around in a single go. I later moved down to the less intensive floor, becoming less Star Trek Borg looking with each Pacer wire, central line and IV removed.

Speaker 2:

June 21 was my 15th birthday. One, two, three. I was counting my breath slowly to keep my oxygen saturation from plummeting. This lap as I turned the corner with an IV pole in tow. Happy birthday to you. You rupt it from family and friends, along with doctors, nurses and therapists that had become family, realizing the only way to recovery was to walk there. I went on a walk every time I was upset, bored or excited. It tamed emotions well. I eased into the physical demands of athletic training while falling in love with the way the body can move, handle stresses and heal itself.

Speaker 2:

In my junior year of high school I decided I wanted to be a physical therapist. I wanted to help congenital heart patients regain their strength, lung power and confidence, like my PT had done a few summers before for me. To the disbelief of that blue third grader at recess I chose a study applied exercise physiology at Texas A&M University. It was my sophomore year in college and my single ventricle heart was not handling the three plus miles of walking I was doing each day. While trying to amend this problem, I was also planning a potential third open heart surgery. That had only a small likelihood of improving my quality of life. To top it off, I had also taken a certain infamous required class at spring. The class graded on one's ability to accomplish difficult physical activities. I was exempt from the cardiovascular test, but I developed a gym routine four to five days a week. I worked on strengthening my core, legs and arms to accomplish modified leg press, bench press and sit-up tests. I left that class in the best shape I had ever been in. I felt strong and confident. My body and soul were ready to take on open heart number three.

Speaker 2:

That summer my surgeons went in planning for a fontan with a mechanical valve or a biventricular repair with two mechanical valves. Once in there, they concluded each plan would cause more problems than they would solve. To finish the multi-hour ordeal, they opened my 19-year-old pulmonary artery band a few millimeters to allow more pulmonary blood flow. Just like before, 24 hours out of surgery, a PT came knocking on my CVICU door, but this time I was ready. Do you know how to fire off your quads? He asked yes, I exclaimed Excitedly, yet a little surprised. He questioned are you sure? Do you want waist support? No, I got this. I responded. I did hundreds of squats this spring, training for this moment. Okay, he said on three, one, two, three, with feet shoulder-width apart and a straight back where as straight as all the wires and tubes would allow. I pushed out of the bed. Less than five seconds later I was standing facing the PT. Can I take a couple of steps before sitting? I really hate to say this.

Speaker 2:

My cardiologist started the following March, but your saturations have steadied out again at 82 percent and the regurgitation through your common atrioventricular valve is still significant and will most likely only get worse with time. I had already figured this out, since none of my pre-op symptoms had resolved. Before the appointment I had gotten a really great inpatient part-time shadowing position. Though I felt at home in a hospital setting, I didn't have the physical stamina to do the job well for three hours a week, much less every day for eight hours. Though painful, I started looking into other viable careers to help me try to establish pediatric cardiac rehabilitation programs.

Speaker 2:

I don't think physical therapy is a realistic path for you. My doctor said I was coming to the realization and was afraid you'd make it concrete. I replied that ended the idea of physical therapy. And I was med Like that blue third grader all those years ago. I was so mad at exercise that I decided I would try to steer clear of it. This time the boycott only lasted three months. After much research and paper writing for classes, I have realized there is a giant hole in scientific literature on how mild-formed hearts respond to exercise. Maybe helping to fill in these gaps is a first step.

Speaker 2:

Just because one dream gets cut off doesn't mean your ultimate end goal is squashed. Lori is a 26-year-old from the Houston and Dallas areas of Texas. She was born with right-dominant complete atria ventricular canal and double outlet right ventricle. Doctors at Texas Children's performed a PA band Glenn and AV Valve Repair to help improve her quality of life. Since writing her essay for this book in 2018, lori was listed for a heart transplant, graduated from Texas A&M University with honors, completed a master of public health degree and epidemiology, and received her new two-ventrical heart. After 400 days of waiting. Lori is now attending physician assistant school. She can now live all the physical activity dreams she dreamt of while writing her essay, specifically hiking, climbing stairs and running. When Lori is not working as a professional student, you can find her spending time with friends at the gym, running the Houston Bayous or streaming a comfort show.

Speaker 4:

Feeling Normal Through Sports. By Michael Hills. I was born in February 1998 in Etobicoke, ontario, canada. I have an amazing sister and two loving parents. In August 1998, I wasn't feeling well unless taken to the doctor. The doctor said take him to SickKids in Toronto right away. They then diagnosed me with a congenital heart defect called hyperplastic lactant syndrome.

Speaker 4:

I had my first of three surgeries shortly after being diagnosed. My first surgery was the Norwood surgery. My second surgery was the Glen surgery. The third and final surgery was the Fontan surgery. All the surgeries were risky but I had sell up the best surgeons in the world operating on me. I spent months in the hospital.

Speaker 4:

I don't remember any of my time in the hospital and I'm thankful for that. Like parents do, I can only imagine what they were going through. My earliest memories are going to my babysitter Maria's house to spend the day there before I was old enough to be in school. I went for walks with Maria and the other kids all the time when we got snow and I had a winter wonderland. I would play in the snow with the other kids. We made snow angels, snowmen and had snowball fights. After my surgeries the doctors said to my parents you won't be able to play hockey or any contact sports, but it will have chances to play other sports.

Speaker 4:

Growing up in Canada and not being able to play hockey was disappointing. Most of my friends and cousins played and loved it. From watching their games I started to love hockey. The Toronto Maple Leafs are my favourite team. Despite not being able to play hockey, I found joy, happiness and a sense of novelty in other sports. When I was younger, in elementary school, getting changed for gym class, other kids would often ask me what's all those marks on your chest? Or how come you have all those marks on your chest? I told them I've got a heart condition and all these scars are from the surgeries that were done. After explaining about the scars, they understood and they would sometimes ask about my condition. This happened again in high school. I would get the same questions and they would get the same answers. Having this CHD has its disadvantages, but I'm proud of the person I am, even if I'm a bit different from other people.

Speaker 4:

I started skating at five and figure skated until I was 18. It wasn't hockey, but I was able to skate on the ice in some capacity. I became a strong skater. Skating gave me exercise to keep my heart strong and healthy. I always came off the ice exhausted, but in a good way, as my coaches gave me a good workout on the ice, especially when I'd come from curling all day to my skating lessons in the evenings.

Speaker 4:

Another sport I fell in love with at a young age was baseball. I joined a local baseball league with some friends when I was seven years old and played for ten summers. One of my best memories came on the baseball diamond. As a kid I remember one play like it was yesterday. I stole home to tie the game at 5-5. What an experience that was. The game ended in a tie, but it was the closest any team had come to winning against the champions, as they went undefeated that season. Playing baseball for ten summers allowed me to be normal. I was able to run around the bases, get dirty from sliding to make plays, and I took part in activities off the field such as go-karting and playing arcade games. When I got older, I would join my team at McDonald's after winning a game. Fast food wasn't the best for me with my condition, and still isn't today, but I'm able to treat myself once in a while. I met amazing people whom I became friends with, some of whom I still keep in touch with today. My friends and I stopped playing off grass season in 2017. Despite not being in a league anymore, we get together occasionally in the summer and play for fun, or we go to the Toronto Blue Jays games, as we are all huge fans.

Speaker 4:

When I started high school, I was nervous. I was nervous about gym class in grade 9 because I didn't know how the other students would react and treat me when they found out about my heart condition. As it turned out, I had nothing to worry about. The other students were great and my teacher was amazing. They treated me like a normal student. I took gym class throughout high school to stay active and healthy. Later, in grade 9, I heard about the curling team at school. I had always watched curling and wanted to try it. Curling is a sport that requires a lot of strength, especially when sleeping in the rock. I didn't know how I would do with it, but tried it anyway. I loved it. I loved moving on the ice, releasing the rock and seeing how the rock curls on the ice.

Speaker 4:

By the time I was in grade 11, I was on the competitive team, taking part in multiple tournaments during the school year. Throughout the school year I was playing in curling tournaments for school. Multiple times during the year I helped my school team make it too, ofsaa twice. Ofsaa is the Ontario Federation of School Athletic Associations. It's a provincial championship in Canada. After the 2014-2015 season, where we went to OFSAA, they awarded me the most improved player award in boys curling. At my school's athletic banquet my coaches and team mates all said way to go, mike, great season, well deserved. I will always remember the curling teams I was a part of during high school. They were a lot of fun. I'm glad I tried curling in grade nine.

Speaker 4:

Outside of high school I curled at a club In my last year. At the club my team won the club's junior curling championship. One player on the opposing team was my good friend, josh. It was a close game that came down to the last shot. Luckily, I had the last shot to go for the win. It was the most difficult shot I had ever had to make during my time curling competitively. I got into the hack, visualised making the shot and took a deep breath before I released the rock. As soon as the rock got through the guards and was going to hit the rock, it needed to hit to win the game. I threw my arms in the air, looked over at my good friend, josh, and smiled. He knew my team had won. He said congrats, hillsy. That was a heck of a shot in game. My teammates were amazed that I had just made that shot. They were all saying way to go, mike, what a shot. It was awesome to win against Josh. We still talk about that game today, even though it has been several years since it happened.

Speaker 4:

Through sports I could feel and act like a normal kid. Like most kids, my baseball pants got dirty almost every game. Thanks, mum, for washing them every time. Most of all, I had fun and made lifelong friends in every sport I played. Thanks to the team at Sick Kits Hospital, I've been able to go to college and graduate with a degree in sports management. Work at a curling club during the winter, work for Jays Care Foundation in the summer. They are a charitable arm of my favourite baseball team, the Toronto Blue Jays. In the future I plan to attend another college for a degree in sport and event marketing. I've been able to have a healthy childhood and early adult life. I wouldn't have had these significant memories and opportunities in sports and outside of sports, if it wasn't for the hospital for sick children.

Speaker 4:

Michael was born in February 1998 in Ottobicoke, ontario, canada. He has hyperplastic left heart syndrome HLHS. He has had three open heart surgeries the Norwood Glen and the Fong Tan. The left side of his heart was underdeveloped when he was born. He is now living a healthy adult life. A huge sports fan. Hockey and baseball are his favourite sports. His favourite teams are the Toronto Maple Leagues and the Toronto Blue Jays.

Speaker 2:

Thanks for listening today. I hope you found this program helpful. Please drop us a like on our Facebook, youtube, instagram channel to let us know what you thought of this episode. And remember my friends, you are not alone.

Speaker 3:

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Our tartar with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from Noon Eastern Time.

H2HwAnna and The Heart of a Heart Warrior Volume One: Survival Chapter 2 (and part of Chapter 3)
(Cont.) H2HwAnna and The Heart of a Heart Warrior Volume One: Survival Chapter 2 (and part of Chapter 3)
Segment 2 -- Chapter 2 from "The Heart of a Heart Warrior"
Not a Heart Warrior by Hope Jaworski
How My CHD Defines Me by Jason Crutchley
Finding Myself Through Service to Others by Christy Sillman, NP
Chapter 3 Being Active with CHD
For the Love of Exercise by Lorrie Hill
Feeling Normal Through Sports by Michael Hills

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