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

wrong. I was so wrong because I did

resume not only a beautiful quality of life, but one

that I will forever be grateful for. I mean,

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

was amazing. And I do have

a greater appreciation, like you sort of mentioned,

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

was never going to get to do again. So

I do have a renewed appreciation for those

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

continue my community service and my cardiac screenings.

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

Welcome to open heart Surgery with Bootst, the

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

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

Boots Knighton, here to share the ups,

downs and everything in between about

heart surgery from the patient's perspective.

Before we dive into this operating room of our

shared experiences, please make sure this

podcast stays on the healthy side of the

charts. If you're finding this podcast helpful or

inspiring, please subscribe and leave a

review. Your support is the heartbeat

that keeps the show alive. And

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

community, come on over to our Patreon.

Join us in the heart chamber. You can

find us at the

www.patreon.com

openheart surgery with boots. There you'll get

exclusive content, behind the scenes stories, and

a chance to connect with other heart warriors.

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

of heart surgery from the other side of the

scalpel.

Holly, I am so glad we have

connected over our hearts. And the amazing

thing about this podcast is I have

had the opportunity of meeting so many incredible

souls who have taken their heart journey

and turn it into something positive, which

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

first set the scene of how

you became a heart patient. Okay,

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

much for including me. It's an honor

to be included and I loved having the opportunity to

meet with you and have some pre recorded

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

for sure. You're welcome. Thank you.

So, boots, my story began quite

a long time ago. My family has a genetic heart

disease called hypertrophic cardiomyopathy,

and our family was affected pretty

extremely. Quite a few family members, I

believe. Out of eleven possible family members, nine of

us had the disease. Sadly, and tragically, six

have died. However, three of us live thanks to

interventional methods, including myself. This was

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

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

and medicine in order to save or protect

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

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

then I started doing some community

service work, heart related. And

ironically, I wasn't conclusively diagnosed with the

disease until a few years after starting my

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

hypertrophic cardiomyopathy, and I had to have a

defibrillator implanted to protect myself from sudden

death. And that journey has

been quite challenging, and that

ultimately, the device in my body

ultimately resulted in me needing emergency

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

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

Yes. So you started a nonprofit

called Heartfelt screening, and you did

that in response to your family's

journey, but prior to the

defibrillator being implanted? Yes. And let me

provide a little bit of clarification. So I actually

began my nonprofit community service work

in 1999. It was with

another organization that I helped create,

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

founder of that organization, and it wasn't called

Heartbelt, but I did start my community service work

at that time, which happened to be providing

community based cardiac screenings in order to save lives from

sudden cardiac arrest through early detection. And

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

conclusively diagnosed myself until

2002, a few years after starting my efforts.

Wow. So what I'm really

struck by already, Holly, is

you were moved by your family's

journey, and you

had the heart pun totally intended to help

others. And I can't help but wonder

how that has actually likely saved your life.

And the reason why I say that is, you

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

episodes I've released. And so I've

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

that the heart patients that

have, that are more generous with their time

and resources, I guess resources is time is

resource, but are more generous and thinking of their

fellow man and woman and wanting to leave the

world better than they found it, have a better

outcome in their health. That's interesting.

Very interesting perspective. And I wouldn't deny it

for my own personal circumstance or just generally speaking, I

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

be possible. And yes, I began

my efforts motivated by my

personal story in terms of my family history

and in memory of my loved ones lost.

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

time, who had already received a heart

transplant, and he encouraged me to

start my advocacy. But

really, the initiation of

the cardiac screenings were a result of

continuing to hear about these young athletes dying

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

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

news or in the newspapers, but we would continually

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

a family with heart disease, we felt

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

the media made it sound like it was some crazy

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

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

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

combination of those two things, a personal

family history, as well as just being,

again, pun intended, heartbroken over continually

hearing about these young athletes dying on the playing field and

really believing that those deaths and

tragedies were probably more often than not a

preventable tragedy. And again, I

wasn't diagnosed myself in 2002. My journey has

been lengthy. It's been sort of simultaneous

with my community service, my own personal health journey,

because it's been broad over all these

years and multiple surgeries and

challenges and complications, again, all the while doing

the community service work. And I do believe

that the risk of sounding overdramatic,

that my life was spared so that I could

save others. And I believe it not

only a blessing to do my work, but an

absolute privilege. And so it kind of goes hand

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

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

And it does give me a whole nother

level of gratitude, right, to be in a

position where I can protect others and save lives

while fighting for my own. It's an

experience and a journey, for sure.

Yeah, no, I love that. And where

you and I have, and I hope this lands

well. My intention is good, but I feel

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

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

same and that we have a perspective

that can't be learned in a book. Amen

to that. And when you finally realize

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

that you can't take all your wealth

and successes with you, and

that really all you can do is take

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

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

really started to live differently. And I just aired

an episode yesterday where a childhood friend that I

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

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

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

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

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

just such power in words. And

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

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

way of loving. Well, because here you are looking

to save lives that lives you've never even

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

everyone could be that way, if we could be thinking

beyond ourselves, imagine the world we would be

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

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

so now you have this diagnosis, and

things started to shift.

Yes. So it was pretty

astonishing to receive my

diagnosis. And, and because I was already doing

the cardiac screenings and the community service, I had a

pretty large network of cardiologists on my medical

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

directly in doing these cardiac screenings.

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

was blessed to receive, and some guidance

and advice in terms of next steps for me.

And it pretty much became clear that,

you know, not only because what my family had

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

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

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

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

my own advice for myself and continue to try

to educate, raise awareness and provide early

detection. So at that time, I made a decision

to have a defibrillator implanted in my

body and boots. Just unfortunately, it

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

incorrectly, causing me a tremendous

amount of pain and suffering. And

I didn't really receive any help or

assistance from the doctor that

put the device in my body. So I was

left to basically navigate through, I

mean, pain, unmerciful pain, pain

that. I realize that this sounds quite

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

people kill themselves that suffer with chronic pain because

it was unbearable and I would never wish that

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

but it was, like I said, unmerciful. And

it was because the device was implanted incorrectly and

it was wreaking all sorts of havoc within my body.

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

every breath that I was taking, my device was

ripping some major muscle groups in my chest and under

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

it became really bad

because no doctors were willing to

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

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

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

that time was just to basically let me suffer.

And it was dreadful. So that was the beginning of

my journey. I, thankfully, almost a year

later, had a surgery to correct that,

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

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

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

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

and I recovered. And then, unfortunately, I was

affected by, like, all the manufacturer

recalls of the equipment that was implanted in my body.

So that led to a few more surgeries. Then I

had a. Some need for battery replacement

kind of prematurely. But even though

those were challenges, the surgeries went

well. And so I didn't have any

other than the, what, six to eight week

typical recovery time. I didn't have anything more

dramatic than that, so I was thankful. But then

right around 2012, I found

out that my leads, the wires,

had been recalled by the manufacturer, and I

knew that was potentially going to be

dangerous. The recommendations at the time,

depending on the use of your

pacemaker inside the defibrillator, that was sort

of set the recommendations of how quickly you

needed the leads or the wires replaced. So mine

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

fractured. And so that

expedited the need for me to have surgery to

not only replace them, but to have a few

existing ones removed, which, again, I realized

was going to be potentially dangerous. And I can

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

So was the recall, because there was a

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

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

exact reasoning for the recall.

I think they were at risk of fracturing

or just malfunctioning. Okay. But I don't

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

particular case, you know, I needed them out.

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

devices in our body for a lengthy period of time.

We run out of room for the wires, so

the removal can be quite challenging. And

so I once again sought the advice

of many of my heartfelt cardiologists of

who I might see to have this situation resolved.

And I was guided to a very skilled

cardiac surgeon in La county.

And so I prepared to have that surgery.

And that was in July of 2012. And

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

Yeah, it went really poorly.

Yeah. So, basically,

I. When I was in surgery, they

had ruptured a vein under my

clavicle, and I was bleeding out and

dying. And so the surgeon had a very limited

amount of time to open me up with open heart

surgery to try to repair the vein, which I learned

later is never successful or usually never

successful, but here I am. So he

obviously, with the 90 seconds that he had available

to him, repaired the vein and saved my

life. I remember

waking up in the hospital, in the ICU,

and to a sweet little gentle kiss on my forehead

from my surgeon, and he sort of whispered in my

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

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

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

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

technical terms, what had happened in terms of

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

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

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

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

motivation for the sweet little kiss was to make sure that

neurologically I was okay and that my senses, my

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

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

lot. I have so many questions.

So is that a risk? The vein

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

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

know? Yes, and I was really

grateful for that. In fact, I remember my

initial consultation with the surgeon,

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

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

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

He was so soft spoken and seemed so genuine,

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

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

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

the most stressful in my career.

And he told me the risks, and he was super

candid. And I remember sharing that conversation with my friends

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

absolutely appreciative because I didn't want anything

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

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

was. And I'm not sure that he illustrated

that specific risk of the vein under the clavicle,

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

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

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

that. And so I was prepared. But you

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

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

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

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

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

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

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

anywhere. I. No.

So my open heart surgery was my

6th surgery, heart related, all

related to my device. And I don't

know why, but

my recovery from the open heart surgery was

once again, unbelievably challenging. Like,

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

call it a day. And when I went into that

surgery, my device was obviously on my left

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

six surgeries and this situation, my

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

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

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

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

I was cut along my left side, my right

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

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

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

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

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

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

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

combination of so many things that

just once again put me back in

tremendous pain for a very long

period of time. And I think the toughest part for

me, because I was a very active and sporty person

prior to the surgery, even through knowing that I had

heart disease and having the device. I

really got to a place where I just

absolutely couldn't imagine any quality of life ever

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

and dark and in so much pain. I

just couldn't comprehend that I could come out

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

you, I got on social media

platforms, I found the Zipper club Facebook

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

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

because I got to connect with people who

had similar journeys. Maybe not exactly the same, but

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

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

me tremendous support and

advice and, you know,

love. And finding those

platforms were my first spark of hope.

Because like you said earlier, it's hard to

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

in your shoes and all our journeys are

different. And I just was so appreciative

of finding my people that could help support me through

mine, and they gave me hope and words of

encouragement. And I think I posted

frequently about, you know, all my struggles. And

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

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

telling you, I will forever be

grateful because it was wonderful. And

then I think it took me about eleven

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

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

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

pain went away. I healed. My body was

miraculous and I came out the other side

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

so wrong because I did resume not only a

beautiful quality of life, but one that I will forever

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

thinking about it, but it was amazing. And I

do have a greater appreciation, like

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

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

So I do have a renewed

appreciation for those things. And then also being able to

get back to my work and continue my community service

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

so blessed. Thank you for being so real with

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

grateful to him and his team, but

they unintentionally set me

up to think that I would come out

skipping. And I kind of did compare to a

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

too. And it would

have only benefited me to mentally

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

sugarcoat it for heart patients listening to this

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

on like Holly has, like I have, you are

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

for. For it to suck for a little bit,

right? It just does. I mean,

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

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

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

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

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

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

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

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

have experienced such a radical shift in my whole soul,

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

to, like, the miracles that will transpire despite

the challenge. That's a beautiful way

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

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

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

have great empathy and compassion, because we understand

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

you had to as well, but it is

magnificent, right? That we get to support each

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

and doing the podcast and giving us an ability

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

person that might not be on our Facebook group.

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

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

Okay, so even though my. My website

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

It's just. It's just heartfelt or

heartfelt cardiac connections is actually the official name. And

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

sounds like a dating or something, and so I

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

So I usually after I get to know

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

dealing with a parent that's tragically lost their child

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

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

because everything about it is absolutely heartfelt.

But we're a 501 nonprofit

organization dedicated to saving lives from sudden

cardiac arrest through early detection, education,

and increasing public awareness. So the other reason why

I'm appreciative of today, Boots, is because

anytime I have a chance to educate or raise awareness

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

I appreciate that. I have entered my

25th year of doing cardiac screenings in the

community. This past Saturday, we returned to

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

over a decade and saved multiple lives. But we

hit a huge milestone, and we screened our

60,000th heart on Saturday, and

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

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

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

I believe that often the gift of purpose is

found through great adversity. So that

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

was spared once again through emergency open heart

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

been magnificent. I'm going to be super

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

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

so worthy of and so deserving of, and

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

60,000 individuals with no funding,

so imagine what we could do with funding.

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

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

entered into this sector thinking that I was

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

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

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

we know that there are some other much larger national

organizations that are highly visible that are receiving

funding and, you know, they do some great

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

grassroots organizations that their boots on the

ground are missing out on the

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

really figured out how to really get that message

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

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

I wanted to have heartfelt in the

tetons where I live? Like, do you?

Is there a way for folks to bring

heartfelt to their communities, or do you have to

travel? Short answer to that is not at this

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

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

that timeframe, I certainly have traveled to multiple

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

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

now. So the longer answer is if there

were specific funding available,

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

trying to really stay focused right here in southern

California, in Orange county and the bordering

counties, La County, San Diego County, Riverside

county, because just logistically and

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

time. Yeah, well, every person you help,

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

or in Southern California. So every life,

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

incredible work despite your six

surgeries. Well, now I've had seven

because I had another one in

2019 because my device had

come out of its pocket and I had to have it

revised. But you're okay now?

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

of its pocket. And that happened a little over,

I think, gosh, already a year ago and

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

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

my right side now. It's definitely

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

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

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

But I did make a commitment to myself

that I would try to see if somehow

my body would miraculously acclimate to

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

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

leaving it as is, and I'm comfortable and

so I am okay. Okay, Holly,

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

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

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

If you have it, if you have the resources,

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

doing amazing work. And as for this podcast,

have you subscribed yet? Have you followed? Be sure

to follow this podcast and share it with a

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

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

because independent podcasters like myself

heavily depend on reviews. It is

amazing how valuable they are. And all the big

name podcasts out there with thousands of reviews

guess what they likely paid for those. So if you

could please just take a moment of your day,

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

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

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

Patreon community I am launching. And if

you donate $10 or more, you get to

join a monthly Zoom heart

chat. I'm naming the community the heart

chamber, which was the former of this podcast

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

excited to connect with listeners and hear

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

too. So until next Tuesday, I

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