Episode 18

The first unroofing of a myocardial bridge in Michigan with Kathy Hoseth- 18

Kathy Hoseth was the first patient to be unroofed for her myocardial bridge in the state of Michigan at age 58. She began experiencing symptoms at age 8 from a myocardial bridge but would not receive the diagnosis until age 58. Throughout childhood, she couldn't catch her breath, her legs hurt, and she just didn't feel right. She even passed out when standing in line for too long in high school. She kept living her life, had two boys in her 20s and even went back to school as a mom. She had her first ER visit during college and was discounted as having stress. She kept going back to the doctor and was diagnosed with pleurisy as well as pericarditis. She was told to take Motrin. She kept living her life. Then, she bought a Fitbit and noticing her heart rate which would be as high as 185. After several more doctors and a heart monitor, Kathy spoke up and said "my inner voice said something is not right." Finally, she had a nuclear stress test and heart catherization which found the myocardial bridge. BUT! Then she was put on medications which did not help. Finally, Kathy had another heart catherization with a female doctor who could see how significant her bridge was. Thanks to Spectrum Health Hospitals for performing the first unroofing procedure at that facility. Kathy is now living her best life. She reflects at the end about how heart surgery changed her. Boots also weaves in some of her story with Kathy's including her ridiculous experience attempting to participate in track in high school.

Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

Transcript

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Boots Knighton: [:

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hare this with you today, so [:

Kathy and I. Became acquainted on the Facebook support group. You will hear me reference time and time again on this podcast for myocardial bridging.

Kathy was 58 years old when she had on roofing. She is now 62 years old, am so honored that Kathy has accepted my invitation to come on to this podcast to share her story. Welcome, Kathy.

Kathy: hi, and thank you for inviting me.

Boots Knighton: So Kathy, I. Am really just anxious to dive into this. You know, I have found that when I talk to fellow heart Warriors, it's like a bal to my soul that I didn't realize I needed. I mean, even though I have an amazing support group and I've done incredible work around my own healing, there's just nothing like connecting with a fellow heart warrior, particularly over the exact same surgery I had.

like set. The setting for us,[:

Kathy: Yeah, I did. I'm, um, you know, it got worse as I, as I got older. truth is, is I, I'm probably one of those rare people that felt it even as a child. and just kind of, you know, how you just instinctly know that something isn't quite right, but you go on with life as we all have. Um, it started at kind of guessed at this age, but I would say even eight, maybe, the, for me, back in those days, it was a sharp pain in my heart that I used to ex. To my mom, I would say, mom, I feel like there's a, needle and why I, I thought of that, I don't know, stabbing me in the heart she'd look at me very concerned and, it, then it would go away.

al bridge was quite deep and.[:

And I just, I mean, I thought I was tough as nails, but I, but I just really wasn't. of the other things I had, which may or may not have been, but I always had a lot of, aches and pains. My legs hurt all the time as a kid. I mean, I would just cry myself to sleep. of my other siblings had that. And it could have been, I mean, they thought maybe it was arthritis. Arthritis wasn't that, wasn't until. know, skip ahead a little bit. Well, actually you can, I mean, there's so many things that once you know that you go, oh, okay. to do track and, uh, junior high, my coach, I just can't get enough air.

d felt, you know, a bit of a [:

If that makes sense. and then skip ahead. I'd say, how old was I? 25, 26. went back to school. When I was 25, I had a two year old and I was, um, pregnant with my next, I know, insane. did it in four and a half years. when I transferred to Michigan State, was a lot. I mean, it, it'd be a lot for anybody.

Um, and a lot of, I guess I probably don't need to explain that, but just the stress of it was really, Tough, just the physical part of trying to deal with a family. and the mental, you know, cuz there was a lot of studying and I was a good student, not so much earlier anyway, um, up in, uh, msu. of heart or not chest pain.

ators. went in and the first [:

You need to go home and take a bath and, you know, have a glass of wine. It sounded good. Um, didn't help. I thought this chest pain that I was feeling was, um, stress and my life had a lot of

Boots Knighton: let me interrupt you. I wanna interrupt you because did you keep having that chest pain?

Intermittently. Okay. And did you take like an anxiety medication, like.

Kathy: No. no.

Boots Knighton: dealt with the pain?

Kathy: I just dealt with the pain. I kind of gutted it out. Um, Tylenol is kind of what I

Boots Knighton: Mm-hmm.

Kathy: and. Yeah, it was, it was bad. And I, I got, so I was laughing about it and I, I remember asking my best friend because she was doing the same thing I was doing. I said, do you get chest pain? And she's like, no. And I'm like, okay.

I guess it's just [:

Boots Knighton: Did it radiate ever? Like did it radiate down your arm or in your neck, or was it just like a full just chest area?

Kathy: What I remember is chest. I mean, it could have been, but I wasn't paying close enough attention. and, and of course if I rested and things were better, it would, be a little less. But raising two little boys and going, it just, it, yeah. Like terrible combination. and then later, I went back to the document, you know, my local doctor having the side pain.

That was awful. And we talked about it. Listen to my heart, said You look really healthy. I, you know, I really don't wanna do anything invasive. And, you know, I'm like, yeah, okay. I said, it might be, be pcy. And I'm like, well, maybe, I don't know. He said, that's kind of what it feels like. Lived with that for.

However many more years. just thought maybe that was it. chest pain

still.

And,

Boots Knighton: For our audience, what is plural?

pain and it's, I'm tr and I [:

Boots Knighton: Mm-hmm.

Kathy: Lungs. and, and I could be wrong. I can research that and, but that's, you know, it's a pain in your side and your upper side.

but I think it has more to do with your lungs

Boots Knighton: How old were you when you had the pericarditis

Kathy: Uh, in my

Boots Knighton: diagnosis.

Kathy: early fifties,

Boots Knighton: I think back to my own medical gaslighting and I feel like you're telling my story in a way without me, I don't have kids, but I could not run in high school very well.

Kathy: Mm-hmm.

akling and you know, my poor [:

And then I actually went to the emergency room. Several times in my twenties with anxiety symptoms, severe chest pain, and never, they never found anything and they just kept telling me to take anxiety medication.

Kathy: Okay, so you are just younger enough? Younger where I'd forgotten. I had a couple. Panic attacks where I actually passed out, in line for a movie with a boyfriend. I don't know how old I was, 16 or 17 and, you know, yeah, those panic attacks I think were directly related to it as well,

but

Boots Knighton: Mm-hmm.

Mm-hmm.

Kathy: couldn't stand in line anywhere very long.

It would just weird stuff.

on't wanna ensue unnecessary [:

At the same time, I think it's just, just having the awareness is so important.

Kathy: Mm-hmm. I agree. Totally agree.

Boots Knighton: Mm-hmm. So What happened next?

Kathy: okay. After that, you know, back home to deal with little kids and, by then working full-time. calling to raise my two little boys, which were also extremely active kids. and just kind of went on with life, always chest pain.

Never really went away, but when it got really bad was the, the real bad, which now I know cuz it was always on my left side, you know, never, it was always right there, uh, you know, life goes on. I'm not gonna tell you my whole life story, but some other stressors, that made the chest pain worse.

you know? And. so I wouldn't [:

you forget, but one of 'em we had, my stepdaughter had two little boys, which I was used to, but they had spent a couple of days with us and by the second morning, And they were young little, I woke up in my, the back, just, everything just hurt so bad. And I, you know, I, and I, I'm not one to complain, so I never said a lot.

but got up and we made the pancakes cuz that's what they liked. by the time we came to clearing the table and doing the dishes, I was having what I thought was a heart attack and it was a spasm. And that's how I explained it. I said, And I, I think I'm having a heart attack. There's something really wrong.

'm sure. And they just said, [:

my first stress test and I, I must have been. Maybe I was in my late forties, actually can't remember exact. I'd have to anyway, pass the stress test with flying colors because, uh, my lifestyle is we walk daily and a lot, I, you know, five miles and I'd be walking, This cardiologist went back to see him again. The stress test. Flying colors. It was like, you seem okay. But what he said to me, and he sat down and talked to me for a long time and asked me some questions.

and he said, did you have pain in the back of your neck? And I was like, eh, I don't know if I did or not, I can't remember, but I'm having pain here. And he said, I think it's pericarditis. and that is where the inflammation around the sac of the heart. And he said, it can cause you a lot of pain. He said, it can come and go.

these heart issues together [:

So I, meanwhile I'm popping these mo

Boots Knighton: No.

Kathy: I know, I know.

Boots Knighton: my gosh.

Kathy: And I kept thinking it's not going away and sometimes it was worse than others, which I think most people with this, understand. and especially if you are doing whatever it can, it can kinda wax and wane and, and I just felt like it was constant and I thought, God, I should go back and see him.

But I didn't, what Finally, a couple things happened. and one, the Fitbit became a thing and my sister and I were doing it, the one, one a year older than me, because also very competitive. It was, and she was always trying to get me into five Ks and she would just leave me in the dust. I mean, I, I had finished 'em, but there was no talking cause I just couldn't breathe.

nd, and, and actually it was [:

And then I just started looking into that more and thinking, th this isn't right back to the local doc. And I met a woman. I, God bless her, she saved me. Interesting. Her husband ended up having something very similar a year later. Anyway, she said to me, they took my heart rate and at that time, for some reason, my left arm hurt and they took, and my e k ekg, she found something on the ekg.

ge that said, well, we saw a [:

Okay, whatever. And I ended up back, to the doc, same thing. And or maybe this, maybe what I just described was the second one. Anyway, similar circumstances

Boots Knighton: Mm-hmm.

Kathy: there's something isn't right here. I said, I don't know what it is. my ex-husband, first husband died at 51 of a heart attack and my kids were still fairly young.

And I said, I'm, so, there was something about that episode and it hadn't been that long that I just said, I want the works. And I think those are the words I said. I said, I may look healthy. There's, my inner voice is telling me there's something not right here. so let's do it. And he hesitated. He didn't want to, so he put me through a battery of tests.

I'm a hypochondriac. Then I [:

Boots Knighton: Mm-hmm. Mm-hmm. Mm-hmm.

Kathy: they thought I had a blockage, so they got me in, uh, right away.

meanwhile I had a trip to Australia planned and, you know, I don't know how many days it was soon. So they got, I was scared. I thought, okay, that's it. I've got a blockage. They'll do a stent. We'll get on with life. So he does the, calf and, and he was not good. He actually had me in tears. He was rough.

He couldn't do it through the wrist. And, and I had bruises. You should have seen my leg. It was horrible. He was horrible. and he gets there.

And

Boots Knighton: And where, where was this? Was this in Michigan?

Kathy: it wasn't Michigan, it wasn't where I had my heart surgery. It was at, um,

Boots Knighton: Okay.

Kathy: there's two hospitals. Fred and Lena Meyer Heart center where I had the surgery. And then there's Mercy Health where I had this, where my, my doctor recommended to go.

ng what he is doing with the [:

They reason this is serious enough,

Boots Knighton: Right. And.

a heart cath is, no picnic. I mean, I, I've had, I had three in a year and a half, and I swear each of those was harder on me than the actual open heart surgery.

It is not, it is not how I wanna spend my time ever again.

Kathy: No, but he get, he gets there. And he said, what? And he looked at all puzzles and he is like, what the heck? And he says, and this is what he saying to me, and let me back up just a little bit. Another issue that I've had is real low blood pressure, real high heart

Boots Knighton: Mm-hmm.

Kathy: he was like, well, we gotta get your blood pressure up before we can too low. So that was after I was in there. So meanwhile, everything wears off, right? And I was like, you know, I can really feel that. Give you anything right now. Your blood pressure's too low. And I'm like, okay, whatever. Just do what you're gonna do.

he's like, did you smoke or [:

How bad the bridge is. So he just stopped and, and I thought, okay, well they found something comes back in the room afterwards and he's, you know, all happy. And he is like, it's just a bridge, it's nothing. And I'm like, really? And I'd never heard of one. So lo and behold, they put me on a ton of medication, just a ton.

which just, if you've been through this, you know, I felt horrible. Like, oh my God, I'd read the other and it did nothing for my symptoms. So,

: you, uh, tell us about the [:

Kathy: one of 'em is Metropol that I occasionally take now very small. They don't even make the amount that I take. It's so small. I have to break things into quarters. which there's a beta block blocker and a, um, Oh my gosh, I can't think of the name of it.

I'm sorry. But two different kinds of

Boots Knighton: That's okay.

Kathy: and also some. For, cholesterol, aspirin. And it seems like there was something else. I mean, I was taking pills all day long and he wanted me to take 'em a couple times a day and I'm like, if this is nothing, why am I being loaded up with all of this medication, making me feel worse?

anyway, started my research. That was about the time I discovered this group, that we are part of. and.

Boots Knighton: what age were you then?

Kathy: I was 58. once things were, correctly diagnosed, they moved quickly and, and I'm almost there. so nothing. And I went back to him and that's when I said, I think I have my timeline a little mixed up.

That's when I said to [:

I didn't know that he hadn't done the proper test Once he was, you know, with the, with the heart cath, and I remember this, he was like, well, there's one more we could do. And I said, and what's that? And he said, the heart cath with the, the wire that goes all the way through and measures what I know now is he was not comfortable. and he didn't end up doing it, um, through the grace of God. Uh, the day that I went in to have that done, it was a terrible snowstorm. And he called me early in the morning and said, well, we can reschedule this. It's not, you know, a big deal. And I'm like, no, I'm coming in. he was there and he ended up not doing it.

ace, her name is, uh, Corco, [:

And I said, do you think for one minute I want open heart surgery? I said, I wanna know what I'm dealing, so,

Boots Knighton: yeah.

yeah.

Kathy: Exactly. I mean, I don't wanna be in the dark, I don't wanna be gaslighted, whatever. let's get to the bottom of it. So before we went in, she's already kind of preparing me. and, but she was so gentle.

She went through my wrist, hardly felt a thing. She was kind con, you know, just a beautiful person. Get back out there and I'm thinking again, it's, you know, whatever, a lifetime of pills she says to me. And she took my hand and she said, This is very significant and I'm going to, have you see, Dr.

group that I, because I was [:

I mean, there was a little, otherwise I'd be dead.

Boots Knighton: Wow. Yeah.

Kathy: But that feeling of, okay, I, I feel validated, but then came, oh my God, I am open heart surgery. Right? so there was, there was that, and I got in to see her. Now I'm even kind of a little shaky just thinking about it, fairly quickly. And oh, she was brilliant. known for heart transplants. her bedside manner was terrible, but she was brilliant and I trusted her.

t done this. I was the first [:

Boots Knighton: Wow.

Kathy: And in her very first meeting with me and my husband was, yeah, it looks like you need surgery.

but to be very truthful, for a minute, she kind of backed up and I think she got nervous, and didn't. I don't, I think she wasn't sure she wanted to do it. And she said, we're gonna send, these out to University of Michigan and have 'em look at your results. And the results came back as she knew, you know, she had already seen it, but she just wanted more proof because they have better tests like Stanford. And then we went, went ahead and did it. mine. Wasn't as easy. I was a little older than a lot of you. I still occasionally will have, pain and a high heart.

but it's not like, it was not anything like it was, and when I say hi, Back to the sister again.

We walk a lot together and I walk with my husband,

Boots Knighton: was the bridge just over your l a d?

r millimeters deep, which is [:

and I can feel that. but it was deep and it was beat on for 58 years, so,

Boots Knighton: Mm-hmm. Mm-hmm. It takes time and I think people forget that. And, and I know I'm, I was very guilty of thinking I just could just get right back to my old life and, you know, it just, that's just not.

That's just not in the cards for us.

So Kathy, I'm just sitting with the fact that you were the first person unroofed in your area and just the magnitude of that, first of all, that had to have taken some courage to be willing be the first

Kathy: Yeah, it did.

ah, and like I hear you like [:

Kathy: Yep.

Boots Knighton: all of that, all the above.

But what was that like going into that surgery knowing that you were the first.

Kathy: When it came right down to it, terrifying. it just was. And I actually, one of the feelings I had when I got in there was, oh my God, am I doing the right thing? Should I get up off this table right now? I didn't, obviously. but yeah, my God, it just was because there's so many people around you and you've been all your life told that it's nothing.

all said and done, I said to [:

I said, by the way, I said I could f I can feel the. Release of pressure. I said, I, you know, I know I've got a lot of healing to do, but I could feel that right away. And she said, good

Boots Knighton: I could too in mine.

Kathy: isn't that amazing? But you can feel that, she asked me later, and I think I told you this before, to do an article for them to, to do an interview, so that other, especially women, um, because I think that's what, you know, her crusade was to help, uh, young women who are ignored, with similar issues.

And that's, you know, say I'm 62, for those of you younger coming up behind us, hopefully this makes a difference. Uh, I actually did, I have one, a person in our group found my story. she's part of our group. I can't remember her name now either. and she, she started messaging me and she said, can I talk to you?

And I referred her group and said, yeah.

Boots Knighton: We don't have to do this alone.

Kathy: no [:

Uh, but again, I think it's because it was so deep and they had to cut so far to release it. but anyway, a nurse came in, uh, when I was feeling a little better and she said, oh my gosh. we were all so excited to be in your surgery. And I looked at her like, why? And she said, we have never seen a, um, angiogram like yours.

She said Your artery had a right angle. She said it just was amazing to all of us and she just was so excited to talk to me about it. What I didn't know was that they had two doctors, two surgeons, because their, is whenever you do something for the first time, um, at that hospital, we have two surgeons.

as this changed your life? I [:

Kathy: Yes, they have. A lot tremendously. I actually feel like a different person. Um, in a lot of ways, right afterwards, and I don't know if you had this experience, I shouldn't say right afterwards actually for quite a while, maybe even a year. I was very quiet, just kind of reflecting and.

Just loving the people around me, that were there to support me. just, just different, um, you know, usually my way, you know, I just kind of plow through everything, you know, if I haven't done it before, we'll figure it out on the way. but it has changed me. and I don't know if they did this with you, but they stopped my heart when they did the surgery.

It was something they did with my,

Boots Knighton: did the same for me.

elt like God smiled finally. [:

Couldn't figure this out a long time ago. But they, they didn't,

Boots Knighton: So you didn't experience any cardiac depression at all?

Kathy: no, I really didn't. If anything I was the other way.

Boots Knighton: Wow.

Kathy: I know, and I know it's rare because many people go the other way. but at first I sure didn't. Not at all.

Boots Knighton: Mm-hmm.

Kathy: Think sometimes maybe the first couple of years I wanted, to be farther ahead than I was, and that could be a little discouraging.

And I, you know, it's, I guess I've just kind of accepted, which is something I never did well either. But acceptance is a whole new word for me, and that's, learning to know your shortcomings and, what I can and cannot do. Just taking good care of myself. My, my diet's changed, my lifestyle has changed.

I, I was never a crazy person, but, um, I drink very little. I'll have a glass of wine or two sometimes with my sister and sometimes with, it's rare because that still affects.

Boots Knighton: Mm-hmm.

iet, how did you change your [:

Kathy: one of the things that I've always been a sugar hound, still am and I have to be careful cut way back on the sugar. I, I won't, can't be a vegetarian. I just can't do it. I love my veggies and I eat a lot, but I still like a little chicken every now and then a little steak. I hate fish unfortunately, but just clean, clean eating, if you will.

Don't do the diet pop. Another thing that I do that I should coffee, I have it in the morning, um, and then I have, if I do have it later, it's decaf.

Boots Knighton: Do you notice that if you drink too much caffeine that it affects your heart? Can you feel it?

Kathy: absolutely. yeah. So I just don't, I mean, there's just those little things. It's like, no, you're, you're not bulletproof, and why do something, that issue, so,

surgery, but I really had to [:

And I think that is a skill that is paramount to healing well is just. Really being in touch with ourselves and our bodies, but our physical body, but also our emotional body and our mental body. And it's just, it's not healing a broken bone. And, and broken bones can be serious, but this is the ultimate surgery I feel like.

And, I feel like it's ano. I'm wondering if you feel the same. Kathy, I, I feel like it's such an opportunity to try again at life. Like it just has a way of just wiping the slate clean and. You know, especially for those of us who are put on the heart lung machine, cuz like Stanford does off pump surgeries, but my surgeon doesn't believe in that.

He, and for me, I had such intensive myocardial bridging on multiple arteries that.

Kathy: That's

s Knighton: It was po it was [:

Like that's what I think you and I went through, right? Like when our heart was put on the heart lung machine.

Kathy: I like it.

Boots Knighton: yeah, so you and I are lucky. We get to, we got to do a reboot that, you know, not that I say, not that I'm advocating for everyone to go out and get an open heart surgery. Like there's, there's gotta be easier, softer ways.

Kathy: Yes. That whole discussion of whether it's hereditary is interesting to me too. I, I don't know.

much a pioneer in your area, [:

I don't know. I have to wonder.

Kathy: Yeah, I feel lucky that I ran into the, the right people at the right time and I, you know, like I said, how they were all women that listened to me and, uh, yeah, woman to woman. But yeah, there, I mean obviously there are plenty of good surgeons out there, but I just felt like mine was one of the best.

And even though she hadn't done it, I knew she could handle it. So going into that surgery part of your question, I knew that I knew that much that I knew she was a brilliant surgeon and could do it, so I don't know. Yep.

ng to listen to each other's [:

And I think that's how the world heals.

Kathy: Absolutely. And I think you're right. This is. Beginning to get some attention and research, because that's what it needs is a lot of research, You know, when I first joined our group, what was there, like 200 I think, people, maybe 200 had had it done. That's not very many.

Boots Knighton: That's not very many. No. And and we're over a thousand people now in our support group. I think.

Kathy: yep. Yep.

Boots Knighton: it's, It's pretty amazing. And so, wow. Well, Kathy, thank you for your time today. Is there, is there anything you want our listeners to know? any, words of advice or, something that surprised you before we hang up today?

're lucky enough to have the [:

Boots Knighton: Yeah, and I would echo that a million times. well thanks again, Kathy. Kathy Hoi from Lowell, Michigan, sharing her story of myocardial Bridging, being Unroofed at age 58 and thriving and living her best life now.

Boots Knighton: And that's our episode for today. Thank you so much for spending a little bit of your day with me. If you enjoyed this podcast, I sure would appreciate if you would go to my website, the heart chamber podcast.com, and make a donation. Also, if you are a fellow heart warrior, I'd love to hear from you.

he contact link and leave me [:

Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.

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