Episode 65

full
Published on:

27th Aug 2024

Why Heart Scans Matter: A personal Battle with Hypertrophic Cardiomyopathy

Hey Heart Buddies! We hear from Holly Morrell who shares the profound impact of hypertrophic cardiomyopathy on her family and herself including her personal experience with a faulty defibrillator implant, multiple surgeries, and a life-threatening rupture that necessitated open-heart surgery. Despite these challenges, Holly finds strength and purpose, continually striving to prevent sudden cardiac arrest in communities through her nonprofit, Heartfelt.

You can get in touch with her at holly@heartfeltscreening.org

Join the Patreon Community! The Joyful Beat zoom group starts in September 2024.

**I am not a doctor and this is not medical advice. Be sure to check in with your care team about all the next right steps for you and your heart.**

How to connect with Boots

Email: Boots@theheartchamberpodcast.com

Instagram: @openheartsurgerywithboots or @boots.knighton

LinkedIn: linkedin.com/in/boots-knighton

Boots Knighton

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Open Heart Surgery with Boots

Transcript
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I came out the other side and it's unbelievable. I was so

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wrong. I was so wrong because I did

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resume not only a beautiful quality of life, but one

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that I will forever be grateful for. I mean,

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it makes me want to cry just thinking about it, but it

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was amazing. And I do have

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a greater appreciation, like you sort of mentioned,

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for the simple things in life, right? The things that I thought I

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was never going to get to do again. So

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I do have a renewed appreciation for those

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things. And then also being able to get back to my work and

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continue my community service and my cardiac screenings.

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I mean, wow, I just. I'm so blessed.

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Welcome to open heart Surgery with Bootst, the

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podcast that gets to the heart of what it's really

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like to go under the knife. I am your host,

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Boots Knighton, here to share the ups,

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downs and everything in between about

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heart surgery from the patient's perspective.

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Before we dive into this operating room of our

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shared experiences, please make sure this

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podcast stays on the healthy side of the

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charts. If you're finding this podcast helpful or

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inspiring, please subscribe and leave a

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review. Your support is the heartbeat

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that keeps the show alive. And

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if you want to be a part of an even closer knit

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community, come on over to our Patreon.

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Join us in the heart chamber. You can

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find us at the

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www.patreon.com

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openheart surgery with boots. There you'll get

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exclusive content, behind the scenes stories, and

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a chance to connect with other heart warriors.

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But for now, let's open up and explore the world

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of heart surgery from the other side of the

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scalpel.

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Holly, I am so glad we have

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connected over our hearts. And the amazing

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thing about this podcast is I have

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had the opportunity of meeting so many incredible

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souls who have taken their heart journey

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and turn it into something positive, which

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listeners today will get to hear from you. But let's

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first set the scene of how

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you became a heart patient. Okay,

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well, I would like to start off by saying thank you so

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much for including me. It's an honor

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to be included and I loved having the opportunity to

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meet with you and have some pre recorded

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discussions. I love your energy and I thank you for your advocacy,

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for sure. You're welcome. Thank you.

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So, boots, my story began quite

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a long time ago. My family has a genetic heart

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disease called hypertrophic cardiomyopathy,

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and our family was affected pretty

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extremely. Quite a few family members, I

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believe. Out of eleven possible family members, nine of

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us had the disease. Sadly, and tragically, six

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have died. However, three of us live thanks to

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interventional methods, including myself. This was

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happening a very long time ago. I think that's why there were so

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many deaths, because there hadn't been advancements in technology

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and medicine in order to save or protect

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their lives. So I had been dealing with this for most of

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my life, since I was a small child, actually. But

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then I started doing some community

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service work, heart related. And

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ironically, I wasn't conclusively diagnosed with the

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disease until a few years after starting my

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community service. So I did find out that I indeed had

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hypertrophic cardiomyopathy, and I had to have a

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defibrillator implanted to protect myself from sudden

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death. And that journey has

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been quite challenging, and that

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ultimately, the device in my body

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ultimately resulted in me needing emergency

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open heart surgery. So I'll be happy to share

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more details about that when you're ready. Yes.

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Yes. So you started a nonprofit

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called Heartfelt screening, and you did

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that in response to your family's

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journey, but prior to the

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defibrillator being implanted? Yes. And let me

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provide a little bit of clarification. So I actually

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began my nonprofit community service work

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in 1999. It was with

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another organization that I helped create,

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and I was the executive director. However, I wasn't a

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founder of that organization, and it wasn't called

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Heartbelt, but I did start my community service work

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at that time, which happened to be providing

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community based cardiac screenings in order to save lives from

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sudden cardiac arrest through early detection. And

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so that was in 1999, and you were correct. I wasn't

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conclusively diagnosed myself until

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2002, a few years after starting my efforts.

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Wow. So what I'm really

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struck by already, Holly, is

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you were moved by your family's

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journey, and you

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had the heart pun totally intended to help

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others. And I can't help but wonder

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how that has actually likely saved your life.

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And the reason why I say that is, you

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know, I'm in. I'm now in the sixties range of number of

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episodes I've released. And so I've

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interviewed quite a few heart patients, and I've noticed

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that the heart patients that

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have, that are more generous with their time

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and resources, I guess resources is time is

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resource, but are more generous and thinking of their

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fellow man and woman and wanting to leave the

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world better than they found it, have a better

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outcome in their health. That's interesting.

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Very interesting perspective. And I wouldn't deny it

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for my own personal circumstance or just generally speaking, I

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could have a. Have a clear understanding of how that would

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be possible. And yes, I began

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my efforts motivated by my

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personal story in terms of my family history

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and in memory of my loved ones lost.

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I was motivated by my father, who was still living at the

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time, who had already received a heart

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transplant, and he encouraged me to

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start my advocacy. But

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really, the initiation of

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the cardiac screenings were a result of

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continuing to hear about these young athletes dying

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on the playing field. I mean, it was. The Internet

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was in its infancy, so this was more like on the tv

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news or in the newspapers, but we would continually

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hear about these young athletes dying on the playing field. And as

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a family with heart disease, we felt

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we sort of understood the reason why they were dying, but

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the media made it sound like it was some crazy

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thing that, you know, couldn't be prevented or

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by some act of God or something, you know, that couldn't really

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be addressed. And we felt differently. So it was a

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combination of those two things, a personal

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family history, as well as just being,

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again, pun intended, heartbroken over continually

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hearing about these young athletes dying on the playing field and

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really believing that those deaths and

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tragedies were probably more often than not a

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preventable tragedy. And again, I

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wasn't diagnosed myself in 2002. My journey has

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been lengthy. It's been sort of simultaneous

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with my community service, my own personal health journey,

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because it's been broad over all these

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years and multiple surgeries and

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challenges and complications, again, all the while doing

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the community service work. And I do believe

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that the risk of sounding overdramatic,

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that my life was spared so that I could

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save others. And I believe it not

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only a blessing to do my work, but an

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absolute privilege. And so it kind of goes hand

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in hand with what you expressed. I mean, I gotta keep

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fighting and staying healthy because I know I can save others.

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And it does give me a whole nother

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level of gratitude, right, to be in a

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position where I can protect others and save lives

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while fighting for my own. It's an

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experience and a journey, for sure.

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Yeah, no, I love that. And where

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you and I have, and I hope this lands

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well. My intention is good, but I feel

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like because of what you and I, granted, our stories are

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different, but I. I sense that the outcome is the

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same and that we have a perspective

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that can't be learned in a book. Amen

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to that. And when you finally realize

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that you're not going to get out of here alive, and

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that you can't take all your wealth

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and successes with you, and

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that really all you can do is take

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the love you felt, the love you gave, that's at least what

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I learned through my journey, and that's when I

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really started to live differently. And I just aired

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an episode yesterday where a childhood friend that I

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interviewed, I'm going to think about this for the rest of my

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life, he said. And I ended up putting it in the title of the

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episode. He said, you know, am I loving? Well,

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I ask that every day. And he just put it in

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a way that, like, I had already been living, but there's

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just such power in words. And

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I'm going to say that now every day. And I think about

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you and what you're doing with heartfelt screening, and that's a

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way of loving. Well, because here you are looking

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to save lives that lives you've never even

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meth. You're just, you know, and if

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everyone could be that way, if we could be thinking

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beyond ourselves, imagine the world we would be

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in. So you're making a difference, but let's

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get back to your story. So you were diagnosed in 2002,

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so now you have this diagnosis, and

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things started to shift.

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Yes. So it was pretty

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astonishing to receive my

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diagnosis. And, and because I was already doing

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the cardiac screenings and the community service, I had a

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pretty large network of cardiologists on my medical

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advisory board. And, you know, I was connected with

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directly in doing these cardiac screenings.

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I did have quite, quite a bit of handholding, which I

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was blessed to receive, and some guidance

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and advice in terms of next steps for me.

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And it pretty much became clear that,

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you know, not only because what my family had

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already endured, but also, you know, a doctor said

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to me, like, you're never going to be able to ignore this because

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you live it every day, you know, and I'm preaching

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early detection and intervention. It's not like I could ignore

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my own advice for myself and continue to try

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to educate, raise awareness and provide early

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detection. So at that time, I made a decision

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to have a defibrillator implanted in my

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body and boots. Just unfortunately, it

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didn't go well for me. The device was implanted

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incorrectly, causing me a tremendous

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amount of pain and suffering. And

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I didn't really receive any help or

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assistance from the doctor that

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put the device in my body. So I was

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left to basically navigate through, I

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mean, pain, unmerciful pain, pain

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that. I realize that this sounds quite

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dramatic and negative, but, I mean, I really do understand why

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people kill themselves that suffer with chronic pain because

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it was unbearable and I would never wish that

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on anyone. I pray to God I never experienced it again,

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but it was, like I said, unmerciful. And

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it was because the device was implanted incorrectly and

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it was wreaking all sorts of havoc within my body.

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So, basically, to spare you all the gory details, with

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every breath that I was taking, my device was

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ripping some major muscle groups in my chest and under

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my arm and so on and so forth. It was crazy. And

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it became really bad

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because no doctors were willing to

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address it. Be truthful. They were, I think, fearful

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of what was going on. They kept saying, we haven't seen this

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before. We don't really know what to do. So their choice at

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that time was just to basically let me suffer.

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And it was dreadful. So that was the beginning of

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my journey. I, thankfully, almost a year

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later, had a surgery to correct that,

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and I got my life back again and the use of my arm, I might

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say. And so I was grateful. You know, it was a. It

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was a rough start, for sure, but I was grateful to have

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my life back and the use of my arm. And I got out of pain

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and I recovered. And then, unfortunately, I was

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affected by, like, all the manufacturer

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recalls of the equipment that was implanted in my body.

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So that led to a few more surgeries. Then I

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had a. Some need for battery replacement

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kind of prematurely. But even though

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those were challenges, the surgeries went

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well. And so I didn't have any

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other than the, what, six to eight week

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typical recovery time. I didn't have anything more

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dramatic than that, so I was thankful. But then

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right around 2012, I found

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out that my leads, the wires,

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had been recalled by the manufacturer, and I

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knew that was potentially going to be

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dangerous. The recommendations at the time,

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depending on the use of your

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pacemaker inside the defibrillator, that was sort

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of set the recommendations of how quickly you

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needed the leads or the wires replaced. So mine

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were supposed to sit tight for a little while, but unfortunately, they

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fractured. And so that

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expedited the need for me to have surgery to

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not only replace them, but to have a few

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existing ones removed, which, again, I realized

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was going to be potentially dangerous. And I can

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keep going if you want. I have a question about that.

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So was the recall, because there was a

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risk of them coming apart, and then they came apart. You

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know, to be honest, I don't remember the

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exact reasoning for the recall.

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I think they were at risk of fracturing

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or just malfunctioning. Okay. But I don't

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remember exactly boots, if I. If I'm honest. But in my

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particular case, you know, I needed them out.

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And as you can imagine, I mean, as we get older and we have these

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devices in our body for a lengthy period of time.

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We run out of room for the wires, so

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the removal can be quite challenging. And

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so I once again sought the advice

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of many of my heartfelt cardiologists of

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who I might see to have this situation resolved.

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And I was guided to a very skilled

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cardiac surgeon in La county.

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And so I prepared to have that surgery.

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And that was in July of 2012. And

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again, unfortunately, it didn't go well for me.

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Yeah, it went really poorly.

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Yeah. So, basically,

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I. When I was in surgery, they

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had ruptured a vein under my

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clavicle, and I was bleeding out and

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dying. And so the surgeon had a very limited

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amount of time to open me up with open heart

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surgery to try to repair the vein, which I learned

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later is never successful or usually never

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successful, but here I am. So he

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obviously, with the 90 seconds that he had available

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to him, repaired the vein and saved my

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life. I remember

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waking up in the hospital, in the ICU,

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and to a sweet little gentle kiss on my forehead

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from my surgeon, and he sort of whispered in my

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ear, I'm so glad you're with us. And

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I remember, even though I was on probably a mega dose of morphine,

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I remember that, like, not really registering. What is he

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talking about? And then he told me, in the very

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technical terms, what had happened in terms of

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being cut open. And it was just too overwhelming. And I

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remember just closing my eyes and praying to go back to sleep

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for a while, which I did. And then I later realized,

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after I had the conversation with him, that part of the

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motivation for the sweet little kiss was to make sure that

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neurologically I was okay and that my senses, my

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hearing and my sight and all that kind of stuff were in good,

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good order. I'm just. That's just a

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lot. I have so many questions.

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So is that a risk? The vein

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being torn, ruptured? Like, did they. Did they prepare you

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for that? Going in, saying this could possibly happen, you

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know? Yes, and I was really

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grateful for that. In fact, I remember my

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initial consultation with the surgeon,

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besides just loving every bit of the vibe of their office,

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it had such a family feel to it. I think his wife was

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running the front desk, their dog was running around the lobby.

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He was so soft spoken and seemed so genuine,

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but, I mean, he laid it out on the table. He

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said, I could remove your heart, your lungs, with no

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problem, but this procedure that I'm going to do for you is

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the most stressful in my career.

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And he told me the risks, and he was super

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candid. And I remember sharing that conversation with my friends

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and family and them being bothered by it. Boots. I was

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absolutely appreciative because I didn't want anything

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sugar coated. I wanted to know, you know, what was going, what

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the risks were. I wanted someone to be real with me. And he definitely

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was. And I'm not sure that he illustrated

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that specific risk of the vein under the clavicle,

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but he talked about, you know, because the wires are fish

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hooked into your heart and running through your veins, there's a risk

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of shredding the vein or ripping a hole in your heart or something like

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that. And so I was prepared. But you

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never think it's gonna happen to you. No. No.

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So I'm like, you know, even though you

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already told me the story, it still. It just takes the

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breath away. Okay, so now you have this reality that

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you've now had open heart surgery. Did you have

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a new. Do you have, do you have a. Do you have a new device

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put in or did they just like, this woman has had enough. No more wires

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anywhere. I. No.

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So my open heart surgery was my

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6th surgery, heart related, all

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related to my device. And I don't

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know why, but

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my recovery from the open heart surgery was

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once again, unbelievably challenging. Like,

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I just didn't heal up in a few weeks and

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call it a day. And when I went into that

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surgery, my device was obviously on my left

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side because that's where they placed them. But because of those other

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six surgeries and this situation, my

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left side was just too, I don't know, mangled,

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for lack of a better word, to keep the device there.

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So they had to put the device on my right side. So basically,

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I mean, I was cut. I know you can't really see my hand gestures, but

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I was cut along my left side, my right

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side and down the middle and then all the tubes and everything else that goes

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along with open heart surgery. So I pretty much looked and

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felt kind of like Frankenstein. It was. It was quite a bit.

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And I think that, like, when it's an

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emergency situation, I don't think they handle things very

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gingerly. I think they're busy ripping you apartheid,

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trying to save your life. And so I think it was like a

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combination of so many things that

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just once again put me back in

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tremendous pain for a very long

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period of time. And I think the toughest part for

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me, because I was a very active and sporty person

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prior to the surgery, even through knowing that I had

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heart disease and having the device. I

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really got to a place where I just

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absolutely couldn't imagine any quality of life ever

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again. I mean, I was just so deep in it

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and dark and in so much pain. I

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just couldn't comprehend that I could come out

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of it any other way. And I think I shared with

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you, I got on social media

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platforms, I found the Zipper club Facebook

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pages. That's where I think you and I originally got connected. But

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I'm telling you what, that was my saving grace,

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because I got to connect with people who

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had similar journeys. Maybe not exactly the same, but

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similar. Some less than, some worse than. I mean,

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you know, just. But a lot of people that could relate and offered

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me tremendous support and

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advice and, you know,

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love. And finding those

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platforms were my first spark of hope.

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Because like you said earlier, it's hard to

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relate, right? Unless you find someone that's walked

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in your shoes and all our journeys are

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different. And I just was so appreciative

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of finding my people that could help support me through

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mine, and they gave me hope and words of

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encouragement. And I think I posted

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frequently about, you know, all my struggles. And

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I connected with a couple people that encouraged me that it would get

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better, even though it was taking me a little bit more time. And I'm

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telling you, I will forever be

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grateful because it was wonderful. And

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then I think it took me about eleven

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months to get off all the drugs. I mean, I wore an

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opiate patch on my arm, I think, for like eleven months because of

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the pain, but I got off all the meds and the

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pain went away. I healed. My body was

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miraculous and I came out the other side

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and it's unbelievable. I was so wrong. I was

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so wrong because I did resume not only a

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beautiful quality of life, but one that I will forever

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be grateful for. I mean, makes me want to cry just

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thinking about it, but it was amazing. And I

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do have a greater appreciation, like

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you sort of mentioned, for the simple things in life, right?

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The things that I thought I was never going to get to do again.

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So I do have a renewed

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appreciation for those things. And then also being able to

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get back to my work and continue my community service

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and my cardiac screenings. I mean, wow, I just. I'm

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so blessed. Thank you for being so real with

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us. And I love my surgeon. I will forever be

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grateful to him and his team, but

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they unintentionally set me

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up to think that I would come out

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skipping. And I kind of did compare to a

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lot of people, but I ran into my fair share of complications,

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too. And it would

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have only benefited me to mentally

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prepare for the unexpected. And I don't want to

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sugarcoat it for heart patients listening to this

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now, like, you're in for a ride, but if you hang

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on like Holly has, like I have, you are

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in for the most spectacular life, but you have to be prepared

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for. For it to suck for a little bit,

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right? It just does. I mean,

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heart surgery is no joke. And, I mean, I

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was told that part, at least, but, like, I wasn't prepared

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for, like, the spiritual shifts, the emotional shifts.

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Right? It's like, jesus, I'm like a whole new person, and I

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wasn't, like, I didn't know it was going to be, like, reborn

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and, like, floating on a cloud. Like, I mean, that's how much I've

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shifted spiritually. I mean, I'm not really. That's a. Maybe a weird

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choice of words, but, like, I. I don't know about you, but, I mean, I

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have experienced such a radical shift in my whole soul,

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and it seems like you have, too. And it's just, like, be open

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to, like, the miracles that will transpire despite

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the challenge. That's a beautiful way

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of putting it. And I'm sure, you know, obviously,

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I can tell by your reactions that even though we have our own

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stories, it's hard to hear each other's because we

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have great empathy and compassion, because we understand

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the journey. And I'm sorry you had to endure what

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you had to as well, but it is

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magnificent, right? That we get to support each

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other. And that's why, once again, I thank you for your advocacy

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and doing the podcast and giving us an ability

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to share our stories with a broader platform, perhaps to reach the

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person that might not be on our Facebook group.

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All right, so, yeah, thank you. Yeah. So, in

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the little bit of time we have left, tell us about heartfelt.

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Okay, so even though my. My website

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is heartfeltscreening.org dot, that's not technically the name.

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It's just. It's just heartfelt or

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heartfelt cardiac connections is actually the official name. And

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I think I joked with you. I don't know what I was thinking because it

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sounds like a dating or something, and so I

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just. I just like to call it heartfelt. And it's.

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So I usually after I get to know

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someone or I'm talking about my work or my journey, or I'm

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dealing with a parent that's tragically lost their child

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or dealing with a family where we've saved their loved one's

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life, I usually say, I hope you understand why I named it heartfelt,

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because everything about it is absolutely heartfelt.

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But we're a 501 nonprofit

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organization dedicated to saving lives from sudden

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cardiac arrest through early detection, education,

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and increasing public awareness. So the other reason why

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I'm appreciative of today, Boots, is because

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anytime I have a chance to educate or raise awareness

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is all part of my mission in life and heartfelt's mission. So

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I appreciate that. I have entered my

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25th year of doing cardiac screenings in the

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community. This past Saturday, we returned to

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a school here in Orange County, California, where we've screened for

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over a decade and saved multiple lives. But we

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hit a huge milestone, and we screened our

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60,000th heart on Saturday, and

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that's pretty incredible. It's so incredible.

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So, you know, again, it's not only a blessing, but a

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privilege to do the work. I think I shared with you that

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I believe that often the gift of purpose is

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found through great adversity. So that

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goes along with what I said. I believe my own life

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was spared once again through emergency open heart

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surgery so that I could save others. And it's just

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been magnificent. I'm going to be super

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transparent. I wish that it wasn't so challenging, because

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we do huge work, but we don't have the funding that we're

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so worthy of and so deserving of, and

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that makes it super challenging. I mean, imagine we've screened

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60,000 individuals with no funding,

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so imagine what we could do with funding.

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Right? Right. And why is that such a challenge, you think?

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Well, I. You know, I'll take personal responsibility. I never

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entered into this sector thinking that I was

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skilled at fundraising. I didn't even know that I was skilled at

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screening hearts, but I figured that part out, but not quite

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the fundraising effort. And, you know, to be real,

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we know that there are some other much larger national

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organizations that are highly visible that are receiving

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funding and, you know, they do some great

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work. But that means that a lot of times the smaller

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grassroots organizations that their boots on the

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ground are missing out on the

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funding because it's not being directed our way. And I haven't

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really figured out how to really get that message

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across because there's plenty out there for all. Yeah,

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that's what I'll say about that. Okay. What if

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I wanted to have heartfelt in the

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tetons where I live? Like, do you?

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Is there a way for folks to bring

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heartfelt to their communities, or do you have to

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travel? Short answer to that is not at this

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moment, because I've been doing it for 25 years,

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obviously. Well, not obviously. I'm just going to say that within

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that timeframe, I certainly have traveled to multiple

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states, you know, lots of different areas to provide the screening,

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but we just don't have the financial resources to support that right

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now. So the longer answer is if there

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were specific funding available,

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that could be a possibility. But right now, I'm

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trying to really stay focused right here in southern

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California, in Orange county and the bordering

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counties, La County, San Diego County, Riverside

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county, because just logistically and

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financially, it just makes more sense at this particular point in

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time. Yeah, well, every person you help,

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it has a ripple effect, whether, you know, it's across the country

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or in Southern California. So every life,

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it counts and every life matters. And you are doing such

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incredible work despite your six

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surgeries. Well, now I've had seven

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because I had another one in

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2019 because my device had

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come out of its pocket and I had to have it

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revised. But you're okay now?

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I am okay now, but my device is once again out

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of its pocket. And that happened a little over,

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I think, gosh, already a year ago and

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same thing. I mean, because I've been down this road before I started having the

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pain, it was causing havoc with my right shoulder because again, it's on

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my right side now. It's definitely

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protruding out my chest wall. I don't know if you

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call it a chest wall, but you know what I mean visually. I mean, it's

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so you can see it so clearly. It was never like that.

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But I did make a commitment to myself

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that I would try to see if somehow

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my body would miraculously acclimate to

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wherever it's landed now. And I'm happy to say

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that I'm okay for the moment. So I'm

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leaving it as is, and I'm comfortable and

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so I am okay. Okay, Holly,

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thank you. And I wish I could give you a hug.

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You're making a difference. I will have in the show

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notes how to find Holly, how to find heartland felt.

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If you have it, if you have the resources,

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show Holly some love and her nonprofit. She's obviously

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doing amazing work. And as for this podcast,

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have you subscribed yet? Have you followed? Be sure

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to follow this podcast and share it with a

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friend today. And what will really make my day is, if

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you haven't already, if you would, please leave a review,

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because independent podcasters like myself

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heavily depend on reviews. It is

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amazing how valuable they are. And all the big

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name podcasts out there with thousands of reviews

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guess what they likely paid for those. So if you

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could please just take a moment of your day,

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fellow listeners, and leave a review that would mean the world.

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And then finally, if you've made it this far, thank you.

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And be sure to go into the show notes and check out the

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Patreon community I am launching. And if

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you donate $10 or more, you get to

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join a monthly Zoom heart

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chat. I'm naming the community the heart

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chamber, which was the former of this podcast

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and it is going to be amazing and I'm so

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excited to connect with listeners and hear

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how things are going. And hopefully Holly will be part of it

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too. So until next Tuesday, I

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love you. You matter and your heart is your best friend.

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About the Podcast

Open Heart Surgery with Boots
A podcast for heart patients by a heart patient
Formerly called The Heart Chamber Podcast, Open Heart Surgery with Boots airs every Tuesday for conversations on open-heart surgery from the patient perspective. Boots Knighton 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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