Shownotes
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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Transcripts
Six years later, you know, I think I'm doing well, and
Speaker:then I'm told I have a severely leaking tricuspid
Speaker:valve. Welcome to Open Heart Surgery with Boots,
Speaker:where we explore the journey of heart health through the eyes
Speaker:of those who live it every day. I'm your host, Boots Knighton,
Speaker:and in season five, we're focusing on what it truly means
Speaker:to thrive. We'll dive into cutting edge medical
Speaker:advances, share powerful stories from both sides of the
Speaker:stethoscope, and learn how to be better advocates for
Speaker:our own health. From candid conversations with cardiac
Speaker:patients to insights from dedicated healthcare
Speaker:professionals, each episode brings you closer to
Speaker:understanding the complex world of heart health. Whether you're
Speaker:navigating your own cardiac journey or supporting someone who
Speaker:is, you're in the right place. So let's get to today's
Speaker:story. I thank you for being
Speaker:here, for supporting this podcast, for
Speaker:showing up in the world and shining your bright light.
Speaker:It is not easy being a heart patient, and if you are new
Speaker:to me and this podcast, I welcome you with open
Speaker:heart and open arms. I started this
Speaker:podcast for all heart patients worldwide, and
Speaker:as of this recording, I have now been downloaded in
Speaker:65 countries, which is just really
Speaker:astonishing to me. And so thank you.
Speaker:I love you. I see you, I hear you. I am here
Speaker:for you. Please send an email
Speaker:bootsheheartchamberpodcast.com that was the
Speaker:original name of this podcast and I want to hear from you if
Speaker:you're just now finding this podcast and tell me what you need to hear
Speaker:more of what you need support with, and then find us on
Speaker:Patreon at Open Heart Surgery with Boots.
Speaker:And that is a great way to support the show and
Speaker:get involved with the community that I'm slowly getting going
Speaker:as I still continue to navigate my own heart
Speaker:story. But today I am excited to bring you
Speaker:a new friend of mine, Lucinda
Speaker:McDermott Pirro. And
Speaker:Lucinda and I met through
Speaker:Women Heart, which is an incredible
Speaker:national organization in the United States
Speaker:that is for women with heart disease. And
Speaker:Lucinda and I met in Rochester,
Speaker:Minnesota this fall, 2024, and
Speaker:I am so grateful. I hopped on a plane as a heart patient and
Speaker:navigated missed connections and a broken
Speaker:bathroom on the first flight. It was all worth it,
Speaker:too. Even after I took a diuretic, it was all worth it
Speaker:so I could meet Lucinda. And by the way,
Speaker:I had to pee in a cup. But that's another day, another
Speaker:podcast, another. Story for another time.
Speaker:So, Lucinda, thank you for saying yes. Welcome to Open Heart
Speaker:Surgery with Boots. Oh, thank you, Boots. It's a pleasure to be
Speaker:here. An honor actually. And I'm looking forward to hearing
Speaker:that story in detail. Yeah. Because that's, that's the
Speaker:girl I am. Hanger. Nice.
Speaker:Nice little teaser. Lucinda is an amazing
Speaker:musician. She's got some crazy ninja skills
Speaker:and the acting and production world and she's
Speaker:also a ninja in the health care space because she,
Speaker:like a lot of us heart patients, have had to navigate the health
Speaker:care maze and is doing it with
Speaker:grace and dignity. And that is one of the reasons why
Speaker:I brought Lucinda on today. She is a
Speaker:very young 63 year old woman. I need to
Speaker:do what she does, dance and sing because apparently that's working.
Speaker:So Lucinda, you have a brand
Speaker:spanking new valve and you are
Speaker:continuing on your cardiac confusion
Speaker:journey, which, those are your words. And so
Speaker:I, I invite you to give us the
Speaker:50,000 foot view of you and your
Speaker:journey. What's worked and what hasn't. Oh,
Speaker:wow. Okay. Well, to kick it off, the, the little
Speaker:piggy valve is about 6 years old. And so in 20, actually
Speaker:in 2017, fall of 2017, I was in, living in
Speaker:Richmond, Virginia. I was a couple months out of having hip
Speaker:replacement surgery. Again. Yes, too young. Hip
Speaker:replacement surgery. And so something may have happened there, but
Speaker:I never been told I had an heart issue. And I
Speaker:started having chest pain. Chest pain, feeling really
Speaker:tired that I chalked that up to panic
Speaker:attacks or anxiety. I was in a very
Speaker:stressful job which eventually was let go
Speaker:from. So it was a high stress time. There
Speaker:was one point in there where I actually fainted in my driveway,
Speaker:but behind the wheel of the car. So luckily I hadn't pulled out
Speaker:yet. Still I'm like, oh gosh, did I just not eat
Speaker:breakfast? You know, not paying any attention. I had
Speaker:my, my heart was being listened to. I had doctor appointments, no one said
Speaker:anything. And at the end of May, we had moved back to where
Speaker:we are in the, in the Blue Ridge mountains of Virginia from, from
Speaker:Richmond. And just because I like my
Speaker:previous OB GYN nurse practitioner, I went to see her to
Speaker:check everything under the hood. She listened to my heart and immediately looked at
Speaker:me and she's a friend with tears in her eyes and said, have I or
Speaker:any other doctor told you you have a murmur? And I was like,
Speaker:oh, everybody has a heart murmur, come on. And she said
Speaker:with all seriousness, yours is really loud and I'm very concerned
Speaker:and you need to get an EKG and do all the things. And I was
Speaker:like, well, so I did get said EKG
Speaker:and at that point, my pcp, who'd been my former
Speaker:PCP three years previous, also said, that's the same
Speaker:thing. She said, I sent you a perfectly healthy. You come back to me with
Speaker:this. What's going on? And it just. So a series of
Speaker:tests that was in beginning of June,
Speaker:actually, and by August six, they went in to
Speaker:try and repair my mitral valve, and it was too far gone. And so they
Speaker:replaced it. We had a previous discussion. If I needed to have it
Speaker:replaced, I got a porcine valve. And so then it was all the things that
Speaker:you deal with coming out of heart surgery. Now I will say I'm going to
Speaker:kind of try and give you the Cliff Note version. Six years later, you
Speaker:know, I think I'm doing well. And then I'm told I have a
Speaker:severely leaking tricuspid valve. When I first had my
Speaker:mitral valve, everything was moving so fast,
Speaker:and I really felt like a deer in the headlights. And I
Speaker:was just going from test to test and doctor to doctor. I didn't have
Speaker:a secure insurance at that point. So tests that I thought
Speaker:were covered, I was then told they were not covered. They were considered out of
Speaker:network. That's a whole other issue for another
Speaker:episode, I suppose. But I was very happy to
Speaker:be just told what to do. I had a good friend. I reached
Speaker:out to my friend Teddy, who had had similar
Speaker:surgery, and he said, if you. He talked me through some things.
Speaker:He said, I can tell you what's going to happen if you want to know.
Speaker:I said, I don't want to know. I said, I don't think I can handle
Speaker:it. And he said, okay, I won't tell you and don't look
Speaker:it up. So in terms of what the surgery was going to do,
Speaker:all the details, he wanted to know. So. So I had to. I just
Speaker:depended on the. I felt I found a good surgeon. My
Speaker:cardiologist was about 45 minutes away at the time because there was no one
Speaker:close. And so for that procedure, I went
Speaker:in really not knowing. Knowing very little about the heart,
Speaker:maybe close to nothing. And so, you know,
Speaker:fast forward to this past March or April,
Speaker:actually. I had the echo done. And
Speaker:in April. March, sorry, March and the previous
Speaker:year, I'd be going through different tests because I started having atrial
Speaker:fib, a flutter and some pain and feeling
Speaker:short of breath. And my cardiologist started doing tests. So
Speaker:it took over a year from the time I said, something's not right. In April
Speaker:of 23, April of 24, that was in March. So around the
Speaker:end of April, I get these results about, you have a
Speaker:severely leaking tricuspid valve. And I was like,
Speaker:oh, well, I expected you, him to say, like, oh, you're
Speaker:doing fine. Towel on, off, and we'll do this echo again in three years
Speaker:or whatever. And so I like, well, what does that mean? He said,
Speaker:well, you know, we'll, We'll. We'll check it out
Speaker:in. Again in six months, we'll do another echo. And, you know, if
Speaker:something needs to be done, well, now they can, you know, do things through the
Speaker:vein and you might not have to be opened up again.
Speaker:That's all I got, and that's all I
Speaker:absorbed. And because I'm. I've been taking
Speaker:courses towards being a mental health coordinator, on my way
Speaker:home, I knew that I was flooded and
Speaker:in some kind of emotional state because I wasn't paying attention to the traffic, and
Speaker:I almost got hit. And so that's when I realized,
Speaker:wow, you're really having a rough time
Speaker:with this information. I'm just hearing this. Very dysregulating.
Speaker:Yeah, it was out of the blue. So I
Speaker:determined after that that this time around,
Speaker:whatever this was going to be, I was going to do, learn as much as
Speaker:I could. Put myself through a 101 about how the heart
Speaker:works, read everything I could, read up on what this
Speaker:thing is, what my options are, and I will not
Speaker:go to a doctor by myself again. And started
Speaker:finding out where I can go. Where's the best place for me, whether it's in
Speaker:Virginia. Cleveland Clinic, which I ultimately went to. And
Speaker:so I started doing all the research. And that set me on a path to
Speaker:becoming what I call a fierce patient advocate and eventually also
Speaker:finding. Finding women heart. Because my second question to him
Speaker:was, is there any support for heart patients
Speaker:here in Blacksburg, Virginia? No. How about
Speaker:the New River Valley, which is our region? No. Roanoke,
Speaker:which is the closest big. What we call our big city
Speaker:shopping. 40. 40 minute, 45 minutes away?
Speaker:No. And I went online. What's in Virginia? Nothing, except in
Speaker:Hampton Roads. And if you think of the state of Virginia and how that's shaped.
Speaker:Oh, it's a very long way. It's a long way away. We're in the mountains.
Speaker:Hampton Roads is the coast. So five hours.
Speaker:So. And eventually it's when I found women heart and realized kind
Speaker:of what. When we were there. Boots. The, The. The. We heard
Speaker:lots of really wonderful scenes. But I think the thing that stuck with me the
Speaker:most was I first asked, why me? And
Speaker:then I asked, why not me? Wow. Okay.
Speaker:Say more about that. Well, I have known for
Speaker:myself, maybe through the first heart issue and just, you know,
Speaker:other things in my life. I think it's been kind of a find it
Speaker:out by doing is that if you're stuck in
Speaker:something, you can either, you have a choice, you can either stay stuck,
Speaker:you can either feel sorry for yourself, or you have a choice. And I think
Speaker:the only way out of something is through, or the
Speaker:only way through something is out and through helping
Speaker:either helping others or doing something where you. You got to get outside
Speaker:of yourself. You got. You got to get over yourself, and you got to get
Speaker:outside of yourself. It's not to ignore yourself. But if,
Speaker:you know, no one's been able to tell me how long I have, you know,
Speaker:and with the new diagnosis that I have, no one's
Speaker:been able to say, well, here's your life expectancy. So I guess part of
Speaker:it is, well, if it's going to be shorter than
Speaker:I had hoped, then I damn well going to make
Speaker:sure that what I do, at least I feel that
Speaker:I have spent my time in a good way, that it's been
Speaker:worthwhile. Well, that's a really good, like, existential
Speaker:sidebar. The pros and cons of
Speaker:wanting to know how long. Right. Yes.
Speaker:Yes. Yeah. Like, what are. What is the benefit of asking that
Speaker:question and what is the drawback? Well, the
Speaker:drawback is. Well, let me back up,
Speaker:because what I. What I hear in my head, my mother is yelling. In my
Speaker:head, my mother passed away in 2010, and my mother is saying in my head
Speaker:right now, you either live to live or you live to die. And
Speaker:I think maybe that answers both questions.
Speaker:And, you know, I have. I have two children, adult
Speaker:children, 28 and 30. And if
Speaker:there's something that I need to do to make things easy
Speaker:for them, I want to do that. And so I'm not going
Speaker:to wait around. You know, things are in order.
Speaker:A will is done that was actually done when they were toddlers, you know, all
Speaker:those things. And it's funny because I don't get depressed
Speaker:about that. If it did, I think I'd stop and I'd shift gears in
Speaker:my. In my brain. But I've been through lots of instances
Speaker:where, whether it's my husband's parents
Speaker:or my parents or other folks didn't plan well,
Speaker:and they made hell on earth for their people, and I don't want to do
Speaker:that. Gotcha. Yeah. And I. I think it's normal, too,
Speaker:for us to hit Dr. Google
Speaker:and, you know, look up Life expectancy. Because
Speaker:like when I think of life expectancy and asking that
Speaker:existential question, I think of cancer
Speaker:diagnoses, als, you know,
Speaker:some of these like bigger, well this is big too. But like those really
Speaker:big hitting diseases that are just
Speaker:on their own level of hard. I'd like to think of
Speaker:heart disease. I personally, I look at it as having a few
Speaker:more options and, and more easily
Speaker:fixed than you know, unwanted cells growing
Speaker:at fast paced in a human body. It's also just a normal
Speaker:human curiosity of us to know what, wanting
Speaker:to know what this means for our longevity or lack
Speaker:thereof. You know, and it's funny because you mentioned als. So
Speaker:for me, I guess maybe the thing is that why I'm able to
Speaker:say I don't. You know, when I first did Dr. Google with
Speaker:it, I wasn't seeing such great stuff and that was a little
Speaker:emotional. And then I remembered my father was diagnosed with
Speaker:ALS when I was four years old and we were told he had two years
Speaker:to live and he lived for 27. Wow. He lived for
Speaker:27 years to the ripe old age of 86. It arrested in his
Speaker:arms and hands and ultimately they weren't sure what
Speaker:that was. So my takeaway from that is
Speaker:they don't know everything. And even if they were to
Speaker:say this, this long, this blah blah, blah, I am not going to allow myself
Speaker:to be defined by that. And in fact it may just be a
Speaker:thing of. Well, that's what I'm going to bypass, you
Speaker:know. While you dance doing it. Yeah, exactly.
Speaker:So you have this, this severe
Speaker:tricuspid leakage. Yep.
Speaker:How is this impacting your day to day? And, and then
Speaker:also. And then it took you to Cleveland Clinic, right? It
Speaker:took me to Cleveland Clinic in August. I had, was able
Speaker:to get a three day workup and going there. It was
Speaker:my intention to. My goal was to see if I was, was
Speaker:going to be a candidate for the trans tricuspid valve
Speaker:repair where they do this cute little thing where they go through.
Speaker:Did I really just use the word cute? Where.
Speaker:Yes. Okay. So where they go, you know,
Speaker:it's, it's non invasive and. But it is cute. If you look
Speaker:at the video, the little thing is kind of cute. It almost looks like a
Speaker:little mush. It looks like a video game in my
Speaker:mind, in my brain. Anyway, it's, it's
Speaker:new. You have to be considered high risk for them to do
Speaker:it. So I went and I was tested
Speaker:and within, after a couple of
Speaker:tests they said number one, you're too young. Which of Course, you
Speaker:know, I loved. But it's because this has only
Speaker:been around. It was just approved by the FDA in April of
Speaker:24. So they said we don't know how long. What we don't know
Speaker:because it's so new is how long it will last.
Speaker:And you're only 63 and
Speaker:we don't want to have to put, you know, put them on top of each
Speaker:other. And he literally said like Russian nesting dolls
Speaker:or to have to go in and do the invas open you up anyway
Speaker:to take it out. And so that was the first reason,
Speaker:not knowing how long it's going to last. The second reason is they did not
Speaker:know if the tricuspid valve issue was a
Speaker:primary issue or secondary. Primary, meaning the
Speaker:valve is messed up. Because it's a messed up valve.
Speaker:Secondary if something else is causing the
Speaker:leakage. So I was sent home, told we'd
Speaker:have a follow up on October 2nd. So, as you know, I had that follow
Speaker:up on October 2nd and I was still a deer in the headlights
Speaker:from the news I got when I saw you basically the next weekend.
Speaker:And so what I was told is the tricuspid valve
Speaker:leakage is a secondary issue and that I have
Speaker:diastolic heart failure. And again,
Speaker:deer in the headlights, because what I'm hearing now is
Speaker:I have something that is no longer acute
Speaker:and potentially can be fixed. Now I have something
Speaker:that is chronic and can't be
Speaker:fixed, will be managed by with medication for the rest
Speaker:of my life. And this is so the shortness of breath
Speaker:is because my left ventricle, diastolic
Speaker:in that mode, does not relax. It is
Speaker:stiff. So that's what I got. And it was really,
Speaker:really, really hard to hear. And I didn't
Speaker:feel like through all of this I haven't felt like my
Speaker:current cardiologist did due diligence. I
Speaker:had to keep asking for things to be done. And I
Speaker:get that he is overworked, but
Speaker:I feel like he dropped the ball. So I
Speaker:have been looking for another cardiologist. I do have one. I will have an appointment
Speaker:actually on November 13th and we'll see how it goes. The other reason
Speaker:is it's a different health system.
Speaker:So the current health system I'm in their portal does
Speaker:not speak with Cleveland Clinic's portal. So I was doing things like print
Speaker:this out here. I'll go to the library and fax it. You fax this. Did
Speaker:you get the fax? You didn't get the fax? Okay, I will call them again
Speaker:and make sure that they send the fax. And so
Speaker:as one of the docs from Cleveland Clinic said, I've had a fragmented care
Speaker:team. So part of my job now as a patient
Speaker:advocate is I am addressing the fact that I've had a fragmented
Speaker:care team and I'm trying to clean that up. All while
Speaker:trying to manage your heart, your symptoms and self care
Speaker:and. Yeah, yeah. And be a gig worker. Freelance gig
Speaker:worker. Yeah, yeah. I hear this more than
Speaker:I don't. And I don't doubt it. Yeah, that's the,
Speaker:the hidden price we pay. We don't have the
Speaker:luxury like life keeps happening around us heart
Speaker:patients. Life doesn't stop. Right. And so not only are
Speaker:we having to advocate fiercely for ourselves, we
Speaker:are also keeping up with the laundry and you know,
Speaker:maintaining our homes and our jobs and our relationships
Speaker:and then, you know, dealing with world current events. It's
Speaker:like so much for the nervous system to
Speaker:handle. There's just so much more to our stories than
Speaker:what you see on, in the scar in our chest.
Speaker:Yeah, for sure. For sure. And when I started on my
Speaker:journey as a, as an intimacy director, you know,
Speaker:I had to take a lot of. This is going to sound like it's out
Speaker:on left field, but I had to take a lot of cultural competency courses.
Speaker:And in one of them, one of my teachers who is a
Speaker:black woman said, you know, the thing, one of the things that's different and
Speaker:for your, for your listeners, I am a lily white
Speaker:woman and I should have said before pronouns, she, her. One of the,
Speaker:that she, she. What she said was black people don't
Speaker:have the privilege of making themselves
Speaker:victims and, and whining for too long. You know, we don't have the
Speaker:privilege we have of just kind of wallowing. We have to get on
Speaker:with it. And sometimes in those moments where it's
Speaker:like, and it's not to say that you were not allowed a day or a
Speaker:time to do whatever you need to do, mourn, stay in
Speaker:bed, you know, watch Netflix, do whatever you need to. Because
Speaker:sometimes that is simply self care. But we also
Speaker:have to realize that the only person who is accountable for moving on
Speaker:and, and getting the done for ourselves is
Speaker:ourselves. We cannot rely on the doctors. We can't rely
Speaker:on somebody else. We have to, we have to drive our own ship
Speaker:simply, you know, no. One'S coming to save us. No,
Speaker:no one's coming to save us. No. Night on White
Speaker:horse. Yeah. And I, I can hear
Speaker:real little curiosity bells going off for people. Can you just
Speaker:spend one minute explaining a little bit More about your
Speaker:intimacy coordinator role that you've had. Sure, sure.
Speaker:So I think the, the. So I'm in theater arts. That's my, that's
Speaker:my field as a. And have been
Speaker:actor, playwright, director. And four years ago,
Speaker:I found this new function in the entertainment
Speaker:field of intimacy work. And what that is is someone.
Speaker:So on one hand, if you, you're probably familiar, most familiar with what a
Speaker:state a fight choreographer does for film and for,
Speaker:for theater is that they, they
Speaker:choreographed and simulate fights to look real, but they're not
Speaker:because it would be impractical for an actor to actually
Speaker:get stabbed with a sword. Right. Or to get smacked. You know, so
Speaker:we choreograph it, we make it look real. So we do the same
Speaker:thing with intimate scenes is. And it used to be that you'd have a
Speaker:director say, you know, if there was a kiss or blah, blah, blah, or whatever.
Speaker:Oh, just go for it, you know, get into it. And so
Speaker:there was a lot of harm being done. There was no consent, there were no
Speaker:boundaries. So in the training of this, you,
Speaker:besides just learning how to choreograph a really good, you know,
Speaker:a scene to look like, wow, that's good.
Speaker:You're also realizing you still have to tell the story, the
Speaker:story arc. But we also take a lot of courses and understanding, you
Speaker:know, cultural competency, trying to be consent
Speaker:forward, boundary awareness and to, to reduce
Speaker:harm in those workspaces. Fascinating.
Speaker:Boom. So, yeah, for those who have
Speaker:curiosities now, you know, and that's a thing. And, and
Speaker:you're doing this as a heart patient, and
Speaker:that's amazing. So speaking of, that's kind of a
Speaker:great segue of, of consent and
Speaker:boundaries with our health care providers.
Speaker:You have obviously had experience with
Speaker:being dissatisfied with healthcare providers that you
Speaker:have interacted with and even some recent
Speaker:stories, and we're not going to mention names, but, you know, there's, there's
Speaker:a way we heart patients need to be
Speaker:seen, heard and validated by our
Speaker:providers that we're trusting our stories with. Yeah.
Speaker:And you and I and many other people I've had
Speaker:the privilege, privilege of interviewing for this podcast have all
Speaker:experienced moments where we have
Speaker:not been heard, where we have not been seen. And can you
Speaker:share with us your experience and what you've learned? Yeah.
Speaker:First of all, so as you know, we're both empathetic people.
Speaker:As a playwright, I try and
Speaker:I automatically think of what's the other character feeling, you
Speaker:know, because you want to paint 360 degree characters. So
Speaker:sometimes this is a detriment to myself because. Because I almost give the other person
Speaker:too much leeway in real life. So I
Speaker:understand that cardiologists are.
Speaker:There's not enough of them. They have too many patients, their time is
Speaker:important. They are trying to
Speaker:balance their patients as well as trying to stay up on
Speaker:current stuff. You know, I remember, I remember
Speaker:you asking that question of, of some of the cardiologists
Speaker:we were with, of how do you stay up with current
Speaker:research so understanding all that. But we are also
Speaker:people who, when we come to a cardiologist who has opened the
Speaker:door to say, you know, you can ask me questions, ask me anything.
Speaker:I think maybe sometimes they forget how
Speaker:vulnerable, raw and
Speaker:tired we are with trying to figure this
Speaker:out. I mean, it's like if I was asking a
Speaker:question about my child, I am all in. I
Speaker:am viscerally connected to
Speaker:trying to find out what's happening with child. Well, I'm viscerally connected to my
Speaker:heart. So when I'm asking you a question about my heart, it is not
Speaker:frivolous to me. And when I'm asking questions about,
Speaker:you know, I said cardiac confusion, I thought, oh, I have this, I have
Speaker:this diagnosis by stolic heart failure. So when I
Speaker:hear someone mention diastolic heart failure
Speaker:sometimes is an umbrella diagnosis for something
Speaker:else. It could be blah, blah, blah. And if I didn't quite catch that
Speaker:because they're using an acronym, you know, just the
Speaker:initials of this very, very long thing. If in a
Speaker:follow up I ask them, hey, I heard you say that
Speaker:it could be something else, what is that? And this
Speaker:particular cardiologist responded, well, I mean
Speaker:that's like heart failure. And then looks at another cardiologist kind of
Speaker:chuckle and say, well, that's just a, that's just, it kind of can be a
Speaker:trash can diagnosis. And to tell you the truth, after trash
Speaker:can diagnosis, I didn't hear anything else. Yeah.
Speaker:Because I felt like I was
Speaker:in inside of that camera
Speaker:technique where the camera is on you and everything
Speaker:in the background recedes. And
Speaker:I heard it was like hearing wow. And
Speaker:I'm sure there's some term for that
Speaker:dysphoria, something, whatever. But I did, I felt extremely
Speaker:dismissed, unheard. And this was
Speaker:from someone who had opened the door and said, whatever questions
Speaker:you have. Right. But you, but I'm going to meet you with trash
Speaker:can diagnosis. Hello, Trash can diagnosis.
Speaker:Astonishing to me. I thought it was very unprofessional, quite
Speaker:frankly. Yeah. For the listeners out there, like
Speaker:run my advice, I'm not a doctor here,
Speaker:but you Know, if, if, if a cardiologist says that to
Speaker:you and you're able to push back.
Speaker:I was there when this happened with Lucinda, and it was
Speaker:not, it was not in a, in a environment where she could have
Speaker:pushed back and be like, hey, what do you mean by that? But, but
Speaker:if it's like in a room, like, where you're getting assessed by a
Speaker:cardiologist in a, like, legit appointment, push back on that
Speaker:and be like, no, really, what do you mean? Because this is how that felt
Speaker:when you said that to me. And you,
Speaker:you have the right to push back and ask more.
Speaker:And if the cardiologist is put out by that, find a new
Speaker:cardiologist. Now, I say that
Speaker:knowing that might be the only cardiologist in network,
Speaker:and I have faced that myself. And that's when it's
Speaker:almost like PhD level skills of
Speaker:like, you need to keep. You don't have a choice,
Speaker:and you have to keep working with this cardiologist. But then
Speaker:you just get, you have to get better at going
Speaker:in with boundaries, asking questions, being
Speaker:fearless about, asking for what you need. And that's just
Speaker:kind of the sad state of the healthcare system
Speaker:and different parts of the United States and probably
Speaker:the world. And for me personally, just,
Speaker:this is just me reflecting with you, Lucinda. This is when I have to
Speaker:get, like, extra generous in my thinking and
Speaker:being like, this is this person's best they can do today.
Speaker:It doesn't make it okay. It does not make it
Speaker:okay. But. Wow. I have come to an empty
Speaker:well for water.
Speaker:Well to, you know, to, to help with your listeners, too. I just
Speaker:want to make sure I will follow up at. I will be
Speaker:following up on that in communication with this, with
Speaker:this particular person. But also it's a
Speaker:reminder that if that happened in a, in
Speaker:a doctor's office, I would hope that you would have had
Speaker:somebody with you. After when I was telling you the story of, when I was
Speaker:told I had the tricuspid valve and I was, like, freaking
Speaker:out, that's when I promised myself that I would not go
Speaker:to a cardiac cardiology appointment again
Speaker:without somebody else there, whether it's my husband or, you know,
Speaker:my neighbors up the street. I've talked, I've said, hey, they know what's going
Speaker:on with me, and I know that they're recently retired, so they have, you know,
Speaker:they have the time. And I've said, if, if I, I have like three
Speaker:or four people that I could go to and say, you, John,
Speaker:can't make this appointment, would you be able to go with me. And so
Speaker:I. And I make them aware. Here's my list of
Speaker:questions. Here's my goal for this visit. Please
Speaker:make sure that I stick to my goals. If something is
Speaker:said and you see that look in my eyes where
Speaker:you're like, oh, she's, she's drifting away, please
Speaker:ask follow up questions for me on my behalf.
Speaker:Yeah, Love it. I think that's great advice to end
Speaker:with. Have an advocate with you. Absolutely.
Speaker:Yeah. I did come up with a new phrase today. Before
Speaker:you say goodbye, is that I think we need heart doulas.
Speaker:Oh, I. I already offer that on my website. Do you
Speaker:really? Fantastic. Okay. Yep, yep. Heart
Speaker:doula surgery services. So,
Speaker:yeah, they kind of got. It kind of got put on ice until recently,
Speaker:but yeah, so it's. Thank goodness we don't have to go through life
Speaker:alone. And that's the purpose of Women Heart. That's the purpose of this
Speaker:podcast. Just ask for what we need and trust that the
Speaker:right people will be there with us every step of the way.
Speaker:Thank you so much, Boots. Yeah, thank you. Lucinda
Speaker:and I will have in the show notes how you can learn more about Lucinda.
Speaker:She is just a bright light in the world as you have witnessed today.
Speaker:So thank you and thank you again for
Speaker:listening to this episode. What would make my heart
Speaker:so happy today is if you would please leave a review if you haven't
Speaker:already. And if you aren't following this podcast, make sure you
Speaker:hit follow. Every follow I see every
Speaker:single time someone chooses to follow this podcast. And it just makes
Speaker:me so happy because that means I'm helping another heart. I
Speaker:really meant it when I said it at the beginning. I'd love to hear from
Speaker:you. And you'll find me over on social media as well. I
Speaker:love you. Your heart matters. Your heart as your best
Speaker:friend. Be sure to come back next week.
