January 14, 2025 • 33 mins
Hey Heart Buddies! Boots Knighton speaks with Lucinda McDermott about navigating heart health after discovering a severely leaking tricuspid valve. Lucinda shares her journey, from initial chest pain and fainting to being diagnosed with a heart murmur by her OB GYN. After mitral valve replacement in 2017, Lucinda faced additional challenges, including fragmented healthcare and dismissive cardiologists. Both Lucinda and Boots stress the importance of patient advocacy, support networks like WomenHeart, and having a “heart doula” during medical appointments. The episode highlights key issues like secure insurance, patient empowerment, and the significance of clear communication with healthcare providers.
Want to contact Lucinda? Email her: lucimc2319@gmail.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
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
(00:23):
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
(00:45):
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.
(01:07):
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
(01:28):
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
(01:50):
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
(02:12):
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
(02:33):
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
(02:55):
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
(03:18):
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,
(03:40):
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.
(04:03):
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
(04:23):
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
(04:45):
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
(05:07):
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
(05:29):
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
(05:51):
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
(06:12):
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
(06:33):
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
(06:56):
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
(07:18):
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
(07:39):
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
(08:01):
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
(08:24):
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,
(08:46):
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
(09:08):
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
(09:29):
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
(09:51):
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
(10:13):
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,
(10:35):
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.
(10:57):
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
(11:18):
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
(11:41):
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
(12:03):
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
(12:26):
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
(12:47):
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
(13:09):
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
(13:32):
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
(13:54):
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
(14:15):
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
(14:37):
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
(14:59):
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
(15:21):
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
(15:41):
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.
(16:04):
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
(16:26):
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
(16:47):
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
(17:10):
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
(17:32):
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
(17:55):
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
(18:17):
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
(18:39):
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
(19:02):
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
(19:24):
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
(19:46):
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
(20:08):
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.
(20:30):
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
(20:51):
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
(21:14):
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
(21:36):
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
(21:58):
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,
(22:20):
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
(22:43):
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
(23:05):
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
(23:27):
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
(23:49):
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
(24:11):
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
(24:33):
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
(24:56):
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
(25:18):
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
(25:40):
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
(26:01):
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
(26:24):
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
(26:46):
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.
(27:07):
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
(27:28):
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
(27:50):
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
(28:11):
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.
(28:33):
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,
(28:54):
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
(29:16):
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
(29:38):
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
(30:00):
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,
(30:22):
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
(30:43):
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
(31:05):
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,
(31:28):
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
(31:50):
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
(32:12):
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
(32:34):
friend. Be sure to come back next week.
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
(00:23):
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
(00:45):
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.
(01:07):
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
(01:28):
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
(01:50):
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
(02:12):
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
(02:33):
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
(02:55):
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
(03:18):
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,
(03:40):
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.
(04:03):
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
(04:23):
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
(04:45):
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
(05:07):
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
(05:29):
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
(05:51):
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
(06:12):
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
(06:33):
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
(06:56):
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
(07:18):
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
(07:39):
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
(08:01):
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
(08:24):
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,
(08:46):
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
(09:08):
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
(09:29):
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
(09:51):
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
(10:13):
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,
(10:35):
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.
(10:57):
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
(11:18):
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
(11:41):
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
(12:03):
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
(12:26):
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
(12:47):
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
(13:09):
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
(13:32):
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
(13:54):
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
(14:15):
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
(14:37):
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
(14:59):
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
(15:21):
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
(15:41):
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.
(16:04):
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
(16:26):
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
(16:47):
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
(17:10):
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
(17:32):
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
(17:55):
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
(18:17):
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
(18:39):
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
(19:02):
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
(19:24):
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
(19:46):
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
(20:08):
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.
(20:30):
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
(20:51):
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
(21:14):
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
(21:36):
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
(21:58):
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,
(22:20):
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
(22:43):
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
(23:05):
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
(23:27):
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
(23:49):
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
(24:11):
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
(24:33):
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
(24:56):
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
(25:18):
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
(25:40):
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
(26:01):
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
(26:24):
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
(26:46):
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.
(27:07):
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
(27:28):
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
(27:50):
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
(28:11):
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.
(28:33):
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,
(28:54):
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
(29:16):
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
(29:38):
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
(30:00):
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,
(30:22):
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
(30:43):
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
(31:05):
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,
(31:28):
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
(31:50):
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
(32:12):
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
(32:34):
friend. Be sure to come back next week.
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