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 Newsletter for almost weekly content for this podcast and other heart related news.

Join the Patreon Community! The Joyful Beat zoom group is where you'll find connection and hope that you aren't alone in your journey.

If you just want to support the show as a one-time gift (thank you), go here.

**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

If you enjoyed this episode, take a minute and share it with someone you know who will find value in it as well. You can share directly from this platform or send them to:

Open Heart Surgery with Boots

Transcript
Speaker:

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

Speaker:

wrong. I was so wrong because I did

Speaker:

resume not only a beautiful quality of life, but one

Speaker:

that I will forever be grateful for. I mean,

Speaker:

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

Speaker:

was amazing. And I do have

Speaker:

a greater appreciation, like you sort of mentioned,

Speaker:

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

Speaker:

was never going to get to do again. So

Speaker:

I do have a renewed appreciation for those

Speaker:

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

Speaker:

continue my community service and my cardiac screenings.

Speaker:

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

Speaker:

Welcome to open heart Surgery with Bootst, the

Speaker:

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

Speaker:

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

Speaker:

Boots Knighton, here to share the ups,

Speaker:

downs and everything in between about

Speaker:

heart surgery from the patient's perspective.

Speaker:

Before we dive into this operating room of our

Speaker:

shared experiences, please make sure this

Speaker:

podcast stays on the healthy side of the

Speaker:

charts. If you're finding this podcast helpful or

Speaker:

inspiring, please subscribe and leave a

Speaker:

review. Your support is the heartbeat

Speaker:

that keeps the show alive. And

Speaker:

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

Speaker:

community, come on over to our Patreon.

Speaker:

Join us in the heart chamber. You can

Speaker:

find us at the

Speaker:

www.patreon.com

Speaker:

openheart surgery with boots. There you'll get

Speaker:

exclusive content, behind the scenes stories, and

Speaker:

a chance to connect with other heart warriors.

Speaker:

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

Speaker:

of heart surgery from the other side of the

Speaker:

scalpel.

Speaker:

Holly, I am so glad we have

Speaker:

connected over our hearts. And the amazing

Speaker:

thing about this podcast is I have

Speaker:

had the opportunity of meeting so many incredible

Speaker:

souls who have taken their heart journey

Speaker:

and turn it into something positive, which

Speaker:

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

Speaker:

first set the scene of how

Speaker:

you became a heart patient. Okay,

Speaker:

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

Speaker:

much for including me. It's an honor

Speaker:

to be included and I loved having the opportunity to

Speaker:

meet with you and have some pre recorded

Speaker:

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

Speaker:

for sure. You're welcome. Thank you.

Speaker:

So, boots, my story began quite

Speaker:

a long time ago. My family has a genetic heart

Speaker:

disease called hypertrophic cardiomyopathy,

Speaker:

and our family was affected pretty

Speaker:

extremely. Quite a few family members, I

Speaker:

believe. Out of eleven possible family members, nine of

Speaker:

us had the disease. Sadly, and tragically, six

Speaker:

have died. However, three of us live thanks to

Speaker:

interventional methods, including myself. This was

Speaker:

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

Speaker:

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

Speaker:

and medicine in order to save or protect

Speaker:

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

Speaker:

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

Speaker:

then I started doing some community

Speaker:

service work, heart related. And

Speaker:

ironically, I wasn't conclusively diagnosed with the

Speaker:

disease until a few years after starting my

Speaker:

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

Speaker:

hypertrophic cardiomyopathy, and I had to have a

Speaker:

defibrillator implanted to protect myself from sudden

Speaker:

death. And that journey has

Speaker:

been quite challenging, and that

Speaker:

ultimately, the device in my body

Speaker:

ultimately resulted in me needing emergency

Speaker:

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

Speaker:

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

Speaker:

Yes. So you started a nonprofit

Speaker:

called Heartfelt screening, and you did

Speaker:

that in response to your family's

Speaker:

journey, but prior to the

Speaker:

defibrillator being implanted? Yes. And let me

Speaker:

provide a little bit of clarification. So I actually

Speaker:

began my nonprofit community service work

Speaker:

in 1999. It was with

Speaker:

another organization that I helped create,

Speaker:

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

Speaker:

founder of that organization, and it wasn't called

Speaker:

Heartbelt, but I did start my community service work

Speaker:

at that time, which happened to be providing

Speaker:

community based cardiac screenings in order to save lives from

Speaker:

sudden cardiac arrest through early detection. And

Speaker:

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

Speaker:

conclusively diagnosed myself until

Speaker:

2002, a few years after starting my efforts.

Speaker:

Wow. So what I'm really

Speaker:

struck by already, Holly, is

Speaker:

you were moved by your family's

Speaker:

journey, and you

Speaker:

had the heart pun totally intended to help

Speaker:

others. And I can't help but wonder

Speaker:

how that has actually likely saved your life.

Speaker:

And the reason why I say that is, you

Speaker:

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

Speaker:

episodes I've released. And so I've

Speaker:

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

Speaker:

that the heart patients that

Speaker:

have, that are more generous with their time

Speaker:

and resources, I guess resources is time is

Speaker:

resource, but are more generous and thinking of their

Speaker:

fellow man and woman and wanting to leave the

Speaker:

world better than they found it, have a better

Speaker:

outcome in their health. That's interesting.

Speaker:

Very interesting perspective. And I wouldn't deny it

Speaker:

for my own personal circumstance or just generally speaking, I

Speaker:

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

Speaker:

be possible. And yes, I began

Speaker:

my efforts motivated by my

Speaker:

personal story in terms of my family history

Speaker:

and in memory of my loved ones lost.

Speaker:

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

Speaker:

time, who had already received a heart

Speaker:

transplant, and he encouraged me to

Speaker:

start my advocacy. But

Speaker:

really, the initiation of

Speaker:

the cardiac screenings were a result of

Speaker:

continuing to hear about these young athletes dying

Speaker:

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

Speaker:

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

Speaker:

news or in the newspapers, but we would continually

Speaker:

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

Speaker:

a family with heart disease, we felt

Speaker:

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

Speaker:

the media made it sound like it was some crazy

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

combination of those two things, a personal

Speaker:

family history, as well as just being,

Speaker:

again, pun intended, heartbroken over continually

Speaker:

hearing about these young athletes dying on the playing field and

Speaker:

really believing that those deaths and

Speaker:

tragedies were probably more often than not a

Speaker:

preventable tragedy. And again, I

Speaker:

wasn't diagnosed myself in 2002. My journey has

Speaker:

been lengthy. It's been sort of simultaneous

Speaker:

with my community service, my own personal health journey,

Speaker:

because it's been broad over all these

Speaker:

years and multiple surgeries and

Speaker:

challenges and complications, again, all the while doing

Speaker:

the community service work. And I do believe

Speaker:

that the risk of sounding overdramatic,

Speaker:

that my life was spared so that I could

Speaker:

save others. And I believe it not

Speaker:

only a blessing to do my work, but an

Speaker:

absolute privilege. And so it kind of goes hand

Speaker:

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

Speaker:

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

Speaker:

And it does give me a whole nother

Speaker:

level of gratitude, right, to be in a

Speaker:

position where I can protect others and save lives

Speaker:

while fighting for my own. It's an

Speaker:

experience and a journey, for sure.

Speaker:

Yeah, no, I love that. And where

Speaker:

you and I have, and I hope this lands

Speaker:

well. My intention is good, but I feel

Speaker:

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

Speaker:

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

Speaker:

same and that we have a perspective

Speaker:

that can't be learned in a book. Amen

Speaker:

to that. And when you finally realize

Speaker:

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

Speaker:

that you can't take all your wealth

Speaker:

and successes with you, and

Speaker:

that really all you can do is take

Speaker:

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

Speaker:

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

Speaker:

really started to live differently. And I just aired

Speaker:

an episode yesterday where a childhood friend that I

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

just such power in words. And

Speaker:

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

Speaker:

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

Speaker:

way of loving. Well, because here you are looking

Speaker:

to save lives that lives you've never even

Speaker:

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

Speaker:

everyone could be that way, if we could be thinking

Speaker:

beyond ourselves, imagine the world we would be

Speaker:

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

Speaker:

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

Speaker:

so now you have this diagnosis, and

Speaker:

things started to shift.

Speaker:

Yes. So it was pretty

Speaker:

astonishing to receive my

Speaker:

diagnosis. And, and because I was already doing

Speaker:

the cardiac screenings and the community service, I had a

Speaker:

pretty large network of cardiologists on my medical

Speaker:

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

Speaker:

directly in doing these cardiac screenings.

Speaker:

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

Speaker:

was blessed to receive, and some guidance

Speaker:

and advice in terms of next steps for me.

Speaker:

And it pretty much became clear that,

Speaker:

you know, not only because what my family had

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

my own advice for myself and continue to try

Speaker:

to educate, raise awareness and provide early

Speaker:

detection. So at that time, I made a decision

Speaker:

to have a defibrillator implanted in my

Speaker:

body and boots. Just unfortunately, it

Speaker:

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

Speaker:

incorrectly, causing me a tremendous

Speaker:

amount of pain and suffering. And

Speaker:

I didn't really receive any help or

Speaker:

assistance from the doctor that

Speaker:

put the device in my body. So I was

Speaker:

left to basically navigate through, I

Speaker:

mean, pain, unmerciful pain, pain

Speaker:

that. I realize that this sounds quite

Speaker:

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

Speaker:

people kill themselves that suffer with chronic pain because

Speaker:

it was unbearable and I would never wish that

Speaker:

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

Speaker:

but it was, like I said, unmerciful. And

Speaker:

it was because the device was implanted incorrectly and

Speaker:

it was wreaking all sorts of havoc within my body.

Speaker:

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

Speaker:

every breath that I was taking, my device was

Speaker:

ripping some major muscle groups in my chest and under

Speaker:

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

Speaker:

it became really bad

Speaker:

because no doctors were willing to

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

that time was just to basically let me suffer.

Speaker:

And it was dreadful. So that was the beginning of

Speaker:

my journey. I, thankfully, almost a year

Speaker:

later, had a surgery to correct that,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

and I recovered. And then, unfortunately, I was

Speaker:

affected by, like, all the manufacturer

Speaker:

recalls of the equipment that was implanted in my body.

Speaker:

So that led to a few more surgeries. Then I

Speaker:

had a. Some need for battery replacement

Speaker:

kind of prematurely. But even though

Speaker:

those were challenges, the surgeries went

Speaker:

well. And so I didn't have any

Speaker:

other than the, what, six to eight week

Speaker:

typical recovery time. I didn't have anything more

Speaker:

dramatic than that, so I was thankful. But then

Speaker:

right around 2012, I found

Speaker:

out that my leads, the wires,

Speaker:

had been recalled by the manufacturer, and I

Speaker:

knew that was potentially going to be

Speaker:

dangerous. The recommendations at the time,

Speaker:

depending on the use of your

Speaker:

pacemaker inside the defibrillator, that was sort

Speaker:

of set the recommendations of how quickly you

Speaker:

needed the leads or the wires replaced. So mine

Speaker:

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

Speaker:

fractured. And so that

Speaker:

expedited the need for me to have surgery to

Speaker:

not only replace them, but to have a few

Speaker:

existing ones removed, which, again, I realized

Speaker:

was going to be potentially dangerous. And I can

Speaker:

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

Speaker:

So was the recall, because there was a

Speaker:

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

Speaker:

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

Speaker:

exact reasoning for the recall.

Speaker:

I think they were at risk of fracturing

Speaker:

or just malfunctioning. Okay. But I don't

Speaker:

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

Speaker:

particular case, you know, I needed them out.

Speaker:

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

Speaker:

devices in our body for a lengthy period of time.

Speaker:

We run out of room for the wires, so

Speaker:

the removal can be quite challenging. And

Speaker:

so I once again sought the advice

Speaker:

of many of my heartfelt cardiologists of

Speaker:

who I might see to have this situation resolved.

Speaker:

And I was guided to a very skilled

Speaker:

cardiac surgeon in La county.

Speaker:

And so I prepared to have that surgery.

Speaker:

And that was in July of 2012. And

Speaker:

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

Speaker:

Yeah, it went really poorly.

Speaker:

Yeah. So, basically,

Speaker:

I. When I was in surgery, they

Speaker:

had ruptured a vein under my

Speaker:

clavicle, and I was bleeding out and

Speaker:

dying. And so the surgeon had a very limited

Speaker:

amount of time to open me up with open heart

Speaker:

surgery to try to repair the vein, which I learned

Speaker:

later is never successful or usually never

Speaker:

successful, but here I am. So he

Speaker:

obviously, with the 90 seconds that he had available

Speaker:

to him, repaired the vein and saved my

Speaker:

life. I remember

Speaker:

waking up in the hospital, in the ICU,

Speaker:

and to a sweet little gentle kiss on my forehead

Speaker:

from my surgeon, and he sort of whispered in my

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

technical terms, what had happened in terms of

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

motivation for the sweet little kiss was to make sure that

Speaker:

neurologically I was okay and that my senses, my

Speaker:

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

Speaker:

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

Speaker:

lot. I have so many questions.

Speaker:

So is that a risk? The vein

Speaker:

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

Speaker:

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

Speaker:

know? Yes, and I was really

Speaker:

grateful for that. In fact, I remember my

Speaker:

initial consultation with the surgeon,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

He was so soft spoken and seemed so genuine,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

the most stressful in my career.

Speaker:

And he told me the risks, and he was super

Speaker:

candid. And I remember sharing that conversation with my friends

Speaker:

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

Speaker:

absolutely appreciative because I didn't want anything

Speaker:

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

Speaker:

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

Speaker:

was. And I'm not sure that he illustrated

Speaker:

that specific risk of the vein under the clavicle,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

that. And so I was prepared. But you

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

anywhere. I. No.

Speaker:

So my open heart surgery was my

Speaker:

6th surgery, heart related, all

Speaker:

related to my device. And I don't

Speaker:

know why, but

Speaker:

my recovery from the open heart surgery was

Speaker:

once again, unbelievably challenging. Like,

Speaker:

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

Speaker:

call it a day. And when I went into that

Speaker:

surgery, my device was obviously on my left

Speaker:

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

Speaker:

six surgeries and this situation, my

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

I was cut along my left side, my right

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

combination of so many things that

Speaker:

just once again put me back in

Speaker:

tremendous pain for a very long

Speaker:

period of time. And I think the toughest part for

Speaker:

me, because I was a very active and sporty person

Speaker:

prior to the surgery, even through knowing that I had

Speaker:

heart disease and having the device. I

Speaker:

really got to a place where I just

Speaker:

absolutely couldn't imagine any quality of life ever

Speaker:

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

Speaker:

and dark and in so much pain. I

Speaker:

just couldn't comprehend that I could come out

Speaker:

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

Speaker:

you, I got on social media

Speaker:

platforms, I found the Zipper club Facebook

Speaker:

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

Speaker:

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

Speaker:

because I got to connect with people who

Speaker:

had similar journeys. Maybe not exactly the same, but

Speaker:

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

Speaker:

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

Speaker:

me tremendous support and

Speaker:

advice and, you know,

Speaker:

love. And finding those

Speaker:

platforms were my first spark of hope.

Speaker:

Because like you said earlier, it's hard to

Speaker:

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

Speaker:

in your shoes and all our journeys are

Speaker:

different. And I just was so appreciative

Speaker:

of finding my people that could help support me through

Speaker:

mine, and they gave me hope and words of

Speaker:

encouragement. And I think I posted

Speaker:

frequently about, you know, all my struggles. And

Speaker:

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

Speaker:

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

Speaker:

telling you, I will forever be

Speaker:

grateful because it was wonderful. And

Speaker:

then I think it took me about eleven

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

pain went away. I healed. My body was

Speaker:

miraculous and I came out the other side

Speaker:

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

Speaker:

so wrong because I did resume not only a

Speaker:

beautiful quality of life, but one that I will forever

Speaker:

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

Speaker:

thinking about it, but it was amazing. And I

Speaker:

do have a greater appreciation, like

Speaker:

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

Speaker:

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

Speaker:

So I do have a renewed

Speaker:

appreciation for those things. And then also being able to

Speaker:

get back to my work and continue my community service

Speaker:

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

Speaker:

so blessed. Thank you for being so real with

Speaker:

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

Speaker:

grateful to him and his team, but

Speaker:

they unintentionally set me

Speaker:

up to think that I would come out

Speaker:

skipping. And I kind of did compare to a

Speaker:

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

Speaker:

too. And it would

Speaker:

have only benefited me to mentally

Speaker:

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

Speaker:

sugarcoat it for heart patients listening to this

Speaker:

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

Speaker:

on like Holly has, like I have, you are

Speaker:

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

Speaker:

for. For it to suck for a little bit,

Speaker:

right? It just does. I mean,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

have experienced such a radical shift in my whole soul,

Speaker:

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

Speaker:

to, like, the miracles that will transpire despite

Speaker:

the challenge. That's a beautiful way

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

have great empathy and compassion, because we understand

Speaker:

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

Speaker:

you had to as well, but it is

Speaker:

magnificent, right? That we get to support each

Speaker:

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

Speaker:

and doing the podcast and giving us an ability

Speaker:

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

Speaker:

person that might not be on our Facebook group.

Speaker:

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

Speaker:

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

Speaker:

Okay, so even though my. My website

Speaker:

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

Speaker:

It's just. It's just heartfelt or

Speaker:

heartfelt cardiac connections is actually the official name. And

Speaker:

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

Speaker:

sounds like a dating or something, and so I

Speaker:

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

Speaker:

So I usually after I get to know

Speaker:

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

Speaker:

dealing with a parent that's tragically lost their child

Speaker:

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

Speaker:

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

Speaker:

because everything about it is absolutely heartfelt.

Speaker:

But we're a 501 nonprofit

Speaker:

organization dedicated to saving lives from sudden

Speaker:

cardiac arrest through early detection, education,

Speaker:

and increasing public awareness. So the other reason why

Speaker:

I'm appreciative of today, Boots, is because

Speaker:

anytime I have a chance to educate or raise awareness

Speaker:

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

Speaker:

I appreciate that. I have entered my

Speaker:

25th year of doing cardiac screenings in the

Speaker:

community. This past Saturday, we returned to

Speaker:

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

Speaker:

over a decade and saved multiple lives. But we

Speaker:

hit a huge milestone, and we screened our

Speaker:

60,000th heart on Saturday, and

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

I believe that often the gift of purpose is

Speaker:

found through great adversity. So that

Speaker:

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

Speaker:

was spared once again through emergency open heart

Speaker:

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

Speaker:

been magnificent. I'm going to be super

Speaker:

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

Speaker:

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

Speaker:

so worthy of and so deserving of, and

Speaker:

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

Speaker:

60,000 individuals with no funding,

Speaker:

so imagine what we could do with funding.

Speaker:

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

Speaker:

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

Speaker:

entered into this sector thinking that I was

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

we know that there are some other much larger national

Speaker:

organizations that are highly visible that are receiving

Speaker:

funding and, you know, they do some great

Speaker:

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

Speaker:

grassroots organizations that their boots on the

Speaker:

ground are missing out on the

Speaker:

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

Speaker:

really figured out how to really get that message

Speaker:

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

Speaker:

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

Speaker:

I wanted to have heartfelt in the

Speaker:

tetons where I live? Like, do you?

Speaker:

Is there a way for folks to bring

Speaker:

heartfelt to their communities, or do you have to

Speaker:

travel? Short answer to that is not at this

Speaker:

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

Speaker:

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

Speaker:

that timeframe, I certainly have traveled to multiple

Speaker:

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

Speaker:

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

Speaker:

now. So the longer answer is if there

Speaker:

were specific funding available,

Speaker:

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

Speaker:

trying to really stay focused right here in southern

Speaker:

California, in Orange county and the bordering

Speaker:

counties, La County, San Diego County, Riverside

Speaker:

county, because just logistically and

Speaker:

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

Speaker:

time. Yeah, well, every person you help,

Speaker:

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

Speaker:

or in Southern California. So every life,

Speaker:

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

Speaker:

incredible work despite your six

Speaker:

surgeries. Well, now I've had seven

Speaker:

because I had another one in

Speaker:

2019 because my device had

Speaker:

come out of its pocket and I had to have it

Speaker:

revised. But you're okay now?

Speaker:

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

Speaker:

of its pocket. And that happened a little over,

Speaker:

I think, gosh, already a year ago and

Speaker:

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

Speaker:

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

Speaker:

my right side now. It's definitely

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

But I did make a commitment to myself

Speaker:

that I would try to see if somehow

Speaker:

my body would miraculously acclimate to

Speaker:

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

Speaker:

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

Speaker:

leaving it as is, and I'm comfortable and

Speaker:

so I am okay. Okay, Holly,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

If you have it, if you have the resources,

Speaker:

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

Speaker:

doing amazing work. And as for this podcast,

Speaker:

have you subscribed yet? Have you followed? Be sure

Speaker:

to follow this podcast and share it with a

Speaker:

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

Speaker:

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

Speaker:

because independent podcasters like myself

Speaker:

heavily depend on reviews. It is

Speaker:

amazing how valuable they are. And all the big

Speaker:

name podcasts out there with thousands of reviews

Speaker:

guess what they likely paid for those. So if you

Speaker:

could please just take a moment of your day,

Speaker:

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

Speaker:

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

Speaker:

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

Speaker:

Patreon community I am launching. And if

Speaker:

you donate $10 or more, you get to

Speaker:

join a monthly Zoom heart

Speaker:

chat. I'm naming the community the heart

Speaker:

chamber, which was the former of this podcast

Speaker:

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

Speaker:

excited to connect with listeners and hear

Speaker:

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

Speaker:

too. So until next Tuesday, I

Speaker:

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

SUPPORT THE HEART CHAMBER

We rely on the generous donations of listeners like you to bring inspiration, hope and healing every week. Thank you for contributing to our cause.
DONATE HERE
B
Bill W $50
Keep up helping heart warriors!
A
Anonymous $100
Show artwork for Open Heart Surgery with Boots

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!
Support This Show