Six years later, you know, I think I'm doing well, and

then I'm told I have a severely leaking tricuspid

valve. Welcome to Open Heart Surgery with Boots,

where we explore the journey of heart health through the eyes

of those who live it every day. I'm your host, Boots Knighton,

and in season five, we're focusing on what it truly means

to thrive. We'll dive into cutting edge medical

advances, share powerful stories from both sides of the

stethoscope, and learn how to be better advocates for

our own health. From candid conversations with cardiac

patients to insights from dedicated healthcare

professionals, each episode brings you closer to

understanding the complex world of heart health. Whether you're

navigating your own cardiac journey or supporting someone who

is, you're in the right place. So let's get to today's

story. I thank you for being

here, for supporting this podcast, for

showing up in the world and shining your bright light.

It is not easy being a heart patient, and if you are new

to me and this podcast, I welcome you with open

heart and open arms. I started this

podcast for all heart patients worldwide, and

as of this recording, I have now been downloaded in

65 countries, which is just really

astonishing to me. And so thank you.

I love you. I see you, I hear you. I am here

for you. Please send an email

bootsheheartchamberpodcast.com that was the

original name of this podcast and I want to hear from you if

you're just now finding this podcast and tell me what you need to hear

more of what you need support with, and then find us on

Patreon at Open Heart Surgery with Boots.

And that is a great way to support the show and

get involved with the community that I'm slowly getting going

as I still continue to navigate my own heart

story. But today I am excited to bring you

a new friend of mine, Lucinda

McDermott Pirro. And

Lucinda and I met through

Women Heart, which is an incredible

national organization in the United States

that is for women with heart disease. And

Lucinda and I met in Rochester,

Minnesota this fall, 2024, and

I am so grateful. I hopped on a plane as a heart patient and

navigated missed connections and a broken

bathroom on the first flight. It was all worth it,

too. Even after I took a diuretic, it was all worth it

so I could meet Lucinda. And by the way,

I had to pee in a cup. But that's another day, another

podcast, another. Story for another time.

So, Lucinda, thank you for saying yes. Welcome to Open Heart

Surgery with Boots. Oh, thank you, Boots. It's a pleasure to be

here. An honor actually. And I'm looking forward to hearing

that story in detail. Yeah. Because that's, that's the

girl I am. Hanger. Nice.

Nice little teaser. Lucinda is an amazing

musician. She's got some crazy ninja skills

and the acting and production world and she's

also a ninja in the health care space because she,

like a lot of us heart patients, have had to navigate the health

care maze and is doing it with

grace and dignity. And that is one of the reasons why

I brought Lucinda on today. She is a

very young 63 year old woman. I need to

do what she does, dance and sing because apparently that's working.

So Lucinda, you have a brand

spanking new valve and you are

continuing on your cardiac confusion

journey, which, those are your words. And so

I, I invite you to give us the

50,000 foot view of you and your

journey. What's worked and what hasn't. Oh,

wow. Okay. Well, to kick it off, the, the little

piggy valve is about 6 years old. And so in 20, actually

in 2017, fall of 2017, I was in, living in

Richmond, Virginia. I was a couple months out of having hip

replacement surgery. Again. Yes, too young. Hip

replacement surgery. And so something may have happened there, but

I never been told I had an heart issue. And I

started having chest pain. Chest pain, feeling really

tired that I chalked that up to panic

attacks or anxiety. I was in a very

stressful job which eventually was let go

from. So it was a high stress time. There

was one point in there where I actually fainted in my driveway,

but behind the wheel of the car. So luckily I hadn't pulled out

yet. Still I'm like, oh gosh, did I just not eat

breakfast? You know, not paying any attention. I had

my, my heart was being listened to. I had doctor appointments, no one said

anything. And at the end of May, we had moved back to where

we are in the, in the Blue Ridge mountains of Virginia from, from

Richmond. And just because I like my

previous OB GYN nurse practitioner, I went to see her to

check everything under the hood. She listened to my heart and immediately looked at

me and she's a friend with tears in her eyes and said, have I or

any other doctor told you you have a murmur? And I was like,

oh, everybody has a heart murmur, come on. And she said

with all seriousness, yours is really loud and I'm very concerned

and you need to get an EKG and do all the things. And I was

like, well, so I did get said EKG

and at that point, my pcp, who'd been my former

PCP three years previous, also said, that's the same

thing. She said, I sent you a perfectly healthy. You come back to me with

this. What's going on? And it just. So a series of

tests that was in beginning of June,

actually, and by August six, they went in to

try and repair my mitral valve, and it was too far gone. And so they

replaced it. We had a previous discussion. If I needed to have it

replaced, I got a porcine valve. And so then it was all the things that

you deal with coming out of heart surgery. Now I will say I'm going to

kind of try and give you the Cliff Note version. Six years later, you

know, I think I'm doing well. And then I'm told I have a

severely leaking tricuspid valve. When I first had my

mitral valve, everything was moving so fast,

and I really felt like a deer in the headlights. And I

was just going from test to test and doctor to doctor. I didn't have

a secure insurance at that point. So tests that I thought

were covered, I was then told they were not covered. They were considered out of

network. That's a whole other issue for another

episode, I suppose. But I was very happy to

be just told what to do. I had a good friend. I reached

out to my friend Teddy, who had had similar

surgery, and he said, if you. He talked me through some things.

He said, I can tell you what's going to happen if you want to know.

I said, I don't want to know. I said, I don't think I can handle

it. And he said, okay, I won't tell you and don't look

it up. So in terms of what the surgery was going to do,

all the details, he wanted to know. So. So I had to. I just

depended on the. I felt I found a good surgeon. My

cardiologist was about 45 minutes away at the time because there was no one

close. And so for that procedure, I went

in really not knowing. Knowing very little about the heart,

maybe close to nothing. And so, you know,

fast forward to this past March or April,

actually. I had the echo done. And

in April. March, sorry, March and the previous

year, I'd be going through different tests because I started having atrial

fib, a flutter and some pain and feeling

short of breath. And my cardiologist started doing tests. So

it took over a year from the time I said, something's not right. In April

of 23, April of 24, that was in March. So around the

end of April, I get these results about, you have a

severely leaking tricuspid valve. And I was like,

oh, well, I expected you, him to say, like, oh, you're

doing fine. Towel on, off, and we'll do this echo again in three years

or whatever. And so I like, well, what does that mean? He said,

well, you know, we'll, We'll. We'll check it out

in. Again in six months, we'll do another echo. And, you know, if

something needs to be done, well, now they can, you know, do things through the

vein and you might not have to be opened up again.

That's all I got, and that's all I

absorbed. And because I'm. I've been taking

courses towards being a mental health coordinator, on my way

home, I knew that I was flooded and

in some kind of emotional state because I wasn't paying attention to the traffic, and

I almost got hit. And so that's when I realized,

wow, you're really having a rough time

with this information. I'm just hearing this. Very dysregulating.

Yeah, it was out of the blue. So I

determined after that that this time around,

whatever this was going to be, I was going to do, learn as much as

I could. Put myself through a 101 about how the heart

works, read everything I could, read up on what this

thing is, what my options are, and I will not

go to a doctor by myself again. And started

finding out where I can go. Where's the best place for me, whether it's in

Virginia. Cleveland Clinic, which I ultimately went to. And

so I started doing all the research. And that set me on a path to

becoming what I call a fierce patient advocate and eventually also

finding. Finding women heart. Because my second question to him

was, is there any support for heart patients

here in Blacksburg, Virginia? No. How about

the New River Valley, which is our region? No. Roanoke,

which is the closest big. What we call our big city

shopping. 40. 40 minute, 45 minutes away?

No. And I went online. What's in Virginia? Nothing, except in

Hampton Roads. And if you think of the state of Virginia and how that's shaped.

Oh, it's a very long way. It's a long way away. We're in the mountains.

Hampton Roads is the coast. So five hours.

So. And eventually it's when I found women heart and realized kind

of what. When we were there. Boots. The, The. The. We heard

lots of really wonderful scenes. But I think the thing that stuck with me the

most was I first asked, why me? And

then I asked, why not me? Wow. Okay.

Say more about that. Well, I have known for

myself, maybe through the first heart issue and just, you know,

other things in my life. I think it's been kind of a find it

out by doing is that if you're stuck in

something, you can either, you have a choice, you can either stay stuck,

you can either feel sorry for yourself, or you have a choice. And I think

the only way out of something is through, or the

only way through something is out and through helping

either helping others or doing something where you. You got to get outside

of yourself. You got. You got to get over yourself, and you got to get

outside of yourself. It's not to ignore yourself. But if,

you know, no one's been able to tell me how long I have, you know,

and with the new diagnosis that I have, no one's

been able to say, well, here's your life expectancy. So I guess part of

it is, well, if it's going to be shorter than

I had hoped, then I damn well going to make

sure that what I do, at least I feel that

I have spent my time in a good way, that it's been

worthwhile. Well, that's a really good, like, existential

sidebar. The pros and cons of

wanting to know how long. Right. Yes.

Yes. Yeah. Like, what are. What is the benefit of asking that

question and what is the drawback? Well, the

drawback is. Well, let me back up,

because what I. What I hear in my head, my mother is yelling. In my

head, my mother passed away in 2010, and my mother is saying in my head

right now, you either live to live or you live to die. And

I think maybe that answers both questions.

And, you know, I have. I have two children, adult

children, 28 and 30. And if

there's something that I need to do to make things easy

for them, I want to do that. And so I'm not going

to wait around. You know, things are in order.

A will is done that was actually done when they were toddlers, you know, all

those things. And it's funny because I don't get depressed

about that. If it did, I think I'd stop and I'd shift gears in

my. In my brain. But I've been through lots of instances

where, whether it's my husband's parents

or my parents or other folks didn't plan well,

and they made hell on earth for their people, and I don't want to do

that. Gotcha. Yeah. And I. I think it's normal, too,

for us to hit Dr. Google

and, you know, look up Life expectancy. Because

like when I think of life expectancy and asking that

existential question, I think of cancer

diagnoses, als, you know,

some of these like bigger, well this is big too. But like those really

big hitting diseases that are just

on their own level of hard. I'd like to think of

heart disease. I personally, I look at it as having a few

more options and, and more easily

fixed than you know, unwanted cells growing

at fast paced in a human body. It's also just a normal

human curiosity of us to know what, wanting

to know what this means for our longevity or lack

thereof. You know, and it's funny because you mentioned als. So

for me, I guess maybe the thing is that why I'm able to

say I don't. You know, when I first did Dr. Google with

it, I wasn't seeing such great stuff and that was a little

emotional. And then I remembered my father was diagnosed with

ALS when I was four years old and we were told he had two years

to live and he lived for 27. Wow. He lived for

27 years to the ripe old age of 86. It arrested in his

arms and hands and ultimately they weren't sure what

that was. So my takeaway from that is

they don't know everything. And even if they were to

say this, this long, this blah blah, blah, I am not going to allow myself

to be defined by that. And in fact it may just be a

thing of. Well, that's what I'm going to bypass, you

know. While you dance doing it. Yeah, exactly.

So you have this, this severe

tricuspid leakage. Yep.

How is this impacting your day to day? And, and then

also. And then it took you to Cleveland Clinic, right? It

took me to Cleveland Clinic in August. I had, was able

to get a three day workup and going there. It was

my intention to. My goal was to see if I was, was

going to be a candidate for the trans tricuspid valve

repair where they do this cute little thing where they go through.

Did I really just use the word cute? Where.

Yes. Okay. So where they go, you know,

it's, it's non invasive and. But it is cute. If you look

at the video, the little thing is kind of cute. It almost looks like a

little mush. It looks like a video game in my

mind, in my brain. Anyway, it's, it's

new. You have to be considered high risk for them to do

it. So I went and I was tested

and within, after a couple of

tests they said number one, you're too young. Which of Course, you

know, I loved. But it's because this has only

been around. It was just approved by the FDA in April of

24. So they said we don't know how long. What we don't know

because it's so new is how long it will last.

And you're only 63 and

we don't want to have to put, you know, put them on top of each

other. And he literally said like Russian nesting dolls

or to have to go in and do the invas open you up anyway

to take it out. And so that was the first reason,

not knowing how long it's going to last. The second reason is they did not

know if the tricuspid valve issue was a

primary issue or secondary. Primary, meaning the

valve is messed up. Because it's a messed up valve.

Secondary if something else is causing the

leakage. So I was sent home, told we'd

have a follow up on October 2nd. So, as you know, I had that follow

up on October 2nd and I was still a deer in the headlights

from the news I got when I saw you basically the next weekend.

And so what I was told is the tricuspid valve

leakage is a secondary issue and that I have

diastolic heart failure. And again,

deer in the headlights, because what I'm hearing now is

I have something that is no longer acute

and potentially can be fixed. Now I have something

that is chronic and can't be

fixed, will be managed by with medication for the rest

of my life. And this is so the shortness of breath

is because my left ventricle, diastolic

in that mode, does not relax. It is

stiff. So that's what I got. And it was really,

really, really hard to hear. And I didn't

feel like through all of this I haven't felt like my

current cardiologist did due diligence. I

had to keep asking for things to be done. And I

get that he is overworked, but

I feel like he dropped the ball. So I

have been looking for another cardiologist. I do have one. I will have an appointment

actually on November 13th and we'll see how it goes. The other reason

is it's a different health system.

So the current health system I'm in their portal does

not speak with Cleveland Clinic's portal. So I was doing things like print

this out here. I'll go to the library and fax it. You fax this. Did

you get the fax? You didn't get the fax? Okay, I will call them again

and make sure that they send the fax. And so

as one of the docs from Cleveland Clinic said, I've had a fragmented care

team. So part of my job now as a patient

advocate is I am addressing the fact that I've had a fragmented

care team and I'm trying to clean that up. All while

trying to manage your heart, your symptoms and self care

and. Yeah, yeah. And be a gig worker. Freelance gig

worker. Yeah, yeah. I hear this more than

I don't. And I don't doubt it. Yeah, that's the,

the hidden price we pay. We don't have the

luxury like life keeps happening around us heart

patients. Life doesn't stop. Right. And so not only are

we having to advocate fiercely for ourselves, we

are also keeping up with the laundry and you know,

maintaining our homes and our jobs and our relationships

and then, you know, dealing with world current events. It's

like so much for the nervous system to

handle. There's just so much more to our stories than

what you see on, in the scar in our chest.

Yeah, for sure. For sure. And when I started on my

journey as a, as an intimacy director, you know,

I had to take a lot of. This is going to sound like it's out

on left field, but I had to take a lot of cultural competency courses.

And in one of them, one of my teachers who is a

black woman said, you know, the thing, one of the things that's different and

for your, for your listeners, I am a lily white

woman and I should have said before pronouns, she, her. One of the,

that she, she. What she said was black people don't

have the privilege of making themselves

victims and, and whining for too long. You know, we don't have the

privilege we have of just kind of wallowing. We have to get on

with it. And sometimes in those moments where it's

like, and it's not to say that you were not allowed a day or a

time to do whatever you need to do, mourn, stay in

bed, you know, watch Netflix, do whatever you need to. Because

sometimes that is simply self care. But we also

have to realize that the only person who is accountable for moving on

and, and getting the done for ourselves is

ourselves. We cannot rely on the doctors. We can't rely

on somebody else. We have to, we have to drive our own ship

simply, you know, no. One'S coming to save us. No,

no one's coming to save us. No. Night on White

horse. Yeah. And I, I can hear

real little curiosity bells going off for people. Can you just

spend one minute explaining a little bit More about your

intimacy coordinator role that you've had. Sure, sure.

So I think the, the. So I'm in theater arts. That's my, that's

my field as a. And have been

actor, playwright, director. And four years ago,

I found this new function in the entertainment

field of intimacy work. And what that is is someone.

So on one hand, if you, you're probably familiar, most familiar with what a

state a fight choreographer does for film and for,

for theater is that they, they

choreographed and simulate fights to look real, but they're not

because it would be impractical for an actor to actually

get stabbed with a sword. Right. Or to get smacked. You know, so

we choreograph it, we make it look real. So we do the same

thing with intimate scenes is. And it used to be that you'd have a

director say, you know, if there was a kiss or blah, blah, blah, or whatever.

Oh, just go for it, you know, get into it. And so

there was a lot of harm being done. There was no consent, there were no

boundaries. So in the training of this, you,

besides just learning how to choreograph a really good, you know,

a scene to look like, wow, that's good.

You're also realizing you still have to tell the story, the

story arc. But we also take a lot of courses and understanding, you

know, cultural competency, trying to be consent

forward, boundary awareness and to, to reduce

harm in those workspaces. Fascinating.

Boom. So, yeah, for those who have

curiosities now, you know, and that's a thing. And, and

you're doing this as a heart patient, and

that's amazing. So speaking of, that's kind of a

great segue of, of consent and

boundaries with our health care providers.

You have obviously had experience with

being dissatisfied with healthcare providers that you

have interacted with and even some recent

stories, and we're not going to mention names, but, you know, there's, there's

a way we heart patients need to be

seen, heard and validated by our

providers that we're trusting our stories with. Yeah.

And you and I and many other people I've had

the privilege, privilege of interviewing for this podcast have all

experienced moments where we have

not been heard, where we have not been seen. And can you

share with us your experience and what you've learned? Yeah.

First of all, so as you know, we're both empathetic people.

As a playwright, I try and

I automatically think of what's the other character feeling, you

know, because you want to paint 360 degree characters. So

sometimes this is a detriment to myself because. Because I almost give the other person

too much leeway in real life. So I

understand that cardiologists are.

There's not enough of them. They have too many patients, their time is

important. They are trying to

balance their patients as well as trying to stay up on

current stuff. You know, I remember, I remember

you asking that question of, of some of the cardiologists

we were with, of how do you stay up with current

research so understanding all that. But we are also

people who, when we come to a cardiologist who has opened the

door to say, you know, you can ask me questions, ask me anything.

I think maybe sometimes they forget how

vulnerable, raw and

tired we are with trying to figure this

out. I mean, it's like if I was asking a

question about my child, I am all in. I

am viscerally connected to

trying to find out what's happening with child. Well, I'm viscerally connected to my

heart. So when I'm asking you a question about my heart, it is not

frivolous to me. And when I'm asking questions about,

you know, I said cardiac confusion, I thought, oh, I have this, I have

this diagnosis by stolic heart failure. So when I

hear someone mention diastolic heart failure

sometimes is an umbrella diagnosis for something

else. It could be blah, blah, blah. And if I didn't quite catch that

because they're using an acronym, you know, just the

initials of this very, very long thing. If in a

follow up I ask them, hey, I heard you say that

it could be something else, what is that? And this

particular cardiologist responded, well, I mean

that's like heart failure. And then looks at another cardiologist kind of

chuckle and say, well, that's just a, that's just, it kind of can be a

trash can diagnosis. And to tell you the truth, after trash

can diagnosis, I didn't hear anything else. Yeah.

Because I felt like I was

in inside of that camera

technique where the camera is on you and everything

in the background recedes. And

I heard it was like hearing wow. And

I'm sure there's some term for that

dysphoria, something, whatever. But I did, I felt extremely

dismissed, unheard. And this was

from someone who had opened the door and said, whatever questions

you have. Right. But you, but I'm going to meet you with trash

can diagnosis. Hello, Trash can diagnosis.

Astonishing to me. I thought it was very unprofessional, quite

frankly. Yeah. For the listeners out there, like

run my advice, I'm not a doctor here,

but you Know, if, if, if a cardiologist says that to

you and you're able to push back.

I was there when this happened with Lucinda, and it was

not, it was not in a, in a environment where she could have

pushed back and be like, hey, what do you mean by that? But, but

if it's like in a room, like, where you're getting assessed by a

cardiologist in a, like, legit appointment, push back on that

and be like, no, really, what do you mean? Because this is how that felt

when you said that to me. And you,

you have the right to push back and ask more.

And if the cardiologist is put out by that, find a new

cardiologist. Now, I say that

knowing that might be the only cardiologist in network,

and I have faced that myself. And that's when it's

almost like PhD level skills of

like, you need to keep. You don't have a choice,

and you have to keep working with this cardiologist. But then

you just get, you have to get better at going

in with boundaries, asking questions, being

fearless about, asking for what you need. And that's just

kind of the sad state of the healthcare system

and different parts of the United States and probably

the world. And for me personally, just,

this is just me reflecting with you, Lucinda. This is when I have to

get, like, extra generous in my thinking and

being like, this is this person's best they can do today.

It doesn't make it okay. It does not make it

okay. But. Wow. I have come to an empty

well for water.

Well to, you know, to, to help with your listeners, too. I just

want to make sure I will follow up at. I will be

following up on that in communication with this, with

this particular person. But also it's a

reminder that if that happened in a, in

a doctor's office, I would hope that you would have had

somebody with you. After when I was telling you the story of, when I was

told I had the tricuspid valve and I was, like, freaking

out, that's when I promised myself that I would not go

to a cardiac cardiology appointment again

without somebody else there, whether it's my husband or, you know,

my neighbors up the street. I've talked, I've said, hey, they know what's going

on with me, and I know that they're recently retired, so they have, you know,

they have the time. And I've said, if, if I, I have like three

or four people that I could go to and say, you, John,

can't make this appointment, would you be able to go with me. And so

I. And I make them aware. Here's my list of

questions. Here's my goal for this visit. Please

make sure that I stick to my goals. If something is

said and you see that look in my eyes where

you're like, oh, she's, she's drifting away, please

ask follow up questions for me on my behalf.

Yeah, Love it. I think that's great advice to end

with. Have an advocate with you. Absolutely.

Yeah. I did come up with a new phrase today. Before

you say goodbye, is that I think we need heart doulas.

Oh, I. I already offer that on my website. Do you

really? Fantastic. Okay. Yep, yep. Heart

doula surgery services. So,

yeah, they kind of got. It kind of got put on ice until recently,

but yeah, so it's. Thank goodness we don't have to go through life

alone. And that's the purpose of Women Heart. That's the purpose of this

podcast. Just ask for what we need and trust that the

right people will be there with us every step of the way.

Thank you so much, Boots. Yeah, thank you. Lucinda

and I will have in the show notes how you can learn more about Lucinda.

She is just a bright light in the world as you have witnessed today.

So thank you and thank you again for

listening to this episode. What would make my heart

so happy today is if you would please leave a review if you haven't

already. And if you aren't following this podcast, make sure you

hit follow. Every follow I see every

single time someone chooses to follow this podcast. And it just makes

me so happy because that means I'm helping another heart. I

really meant it when I said it at the beginning. I'd love to hear from

you. And you'll find me over on social media as well. I

love you. Your heart matters. Your heart as your best

friend. Be sure to come back next week.