Episode 39: Meetup Session-The Caregivers Perspective On Living With a Myocardial Bridged Partner.

SPEAKER_02 0:18

Welcome to Imperfect Heart, a place for you to join me, Jeff Holden, in conversations, discussions, and dialogue about our hearts and the impact myocardial bridges have on them. We'll talk with healthcare professionals, those in related fields that support our condition, and others just like us with stories of their myocardial bridge experiences. It's my intention for this content to inform, educate, entertain, and even motivate or inspire you in your personal journey on dealing with a myocardial bridge. Most importantly is to have you leave each episode with hope knowing you're not alone and that what you're experiencing is real. The episode you're about to listen to was recorded at the Imperfect Heart Live Meetup. This session was a session on caregivers, significant others, spouses, loved ones, who will share their stories about what it was like to go through the experience with their loved one in the process of getting unroofed or in the diagnostic process of getting properly identified with a myocardial bridge. We did have some challenges with the audio, so I apologize, but I think the content is strong enough that you'll appreciate it and enjoy it. If everybody could go around the table and just introduce yourselves, spouse, caregiver, significant other, although who's here and everything is recording, so we'll have you and I'm looking forward to hearing the stories.

SPEAKER_13 1:52

So Teresa? I'm Teresa Holden from Jeff White. Uh are we just introducing ourselves, or do we have to say something?

SPEAKER_02 2:03

Whatever you just start and then just like I love you, Jeff.

SPEAKER_01 2:10

You're a lucky man, Jeff.

SPEAKER_10 2:16

We're all lucky.

SPEAKER_00 2:17

Yeah, we're all right.

SPEAKER_02 2:18

True, everybody's here.

SPEAKER_00 2:21

And I saw you are yay.

SPEAKER_02 2:24

Yeah, and I'm lucky to have this guy. You know what? I do want to say something because there was a point where we didn't know what was wrong with me, as many of us went through our process, let's say. Uh and I had to wear this life vest, which is a you know, it's a mobile defibrillator. But I had to come into the office every day, and I was at a cardiac rehab pre-surgery, pre-everything. They figured that I had had a heart attack, and so they put me in cardiac rehab to try to figure out what it was. Well, that's when I had uh a run of venture tachycardia, and it caused me to have to wear this vest and everything. But I came back to the office that day. I'm in the office, the doc calls and says, Where are you? At the office. He goes, Did you faint? Did you pass out? I'm like, No, but that sensation, wow, which we found out now was endoth dysfunction, was really severe, and I had to take a break after cardiac rehab. He goes, Well, you went into ventricular tachycardia, stop what you're doing, get to the hospital right now. And I said, Okay, well, let me finish. He goes, No, now I said, Okay, okay, put my stuff away. I'm on my way. He goes, You can't drive. What do you mean you can't drive? So I had to walk down into the studio. You remember this. And and Sawyer's been with me for maybe about eight months at the time or a year. And I said, Hey, Sawyer, you're gonna run me to the hospital because they think I'm gonna die. So he drove me down. I called my wife, called Teresa and say, hey, Sawyer's running me down because she at the time was working downtown, and it was it was just one of those things. So you know all the non-home stuff, he's been through most of it with me to the point where I had to have a description in the office what should happen if I drop to everybody in the office.

SPEAKER_01 4:22

Step by step.

SPEAKER_02 4:22

Step by step don't do this, this is okay, just don't do CPR.

SPEAKER_13 4:28

Um, so the thing is the thing that I will insert here is and everybody's different, um, and everybody's spouse is different, and our experience are a little bit different. For us, Jeff is like this all the time. And he's actually like this when he's having a heart attack. Like the guys are in there whooping, everybody looks at the green and say, okay, we'll hear no dude. No, sir.

SPEAKER_11 5:11

You missed your chance time to speed.

SPEAKER_13 5:15

Yes. And the other thing I think I I think that Jenna has a really high pain tolerance. So I think that some things like when he came home from the hospital, even if it's in the car and he's got his pillow, and it just it just seems like when I think about the whole experience, he was a champ. He's sitting there, you know, in the bed, even got COVID, right, right. Oh no. I mean, cough, cough, cough, cough. It just doesn't seem like it hurt that.

SPEAKER_02 5:51

We'll get back to that.

SPEAKER_07 5:57

Good story. Yeah, yeah. Wayne, I'm Wayne McCoy. Uh Wayne and Jane. Yeah, Wayne and Jay were together.

SPEAKER_01 6:04

Wayne and Jane. Julie, I'm from Seattle. I'm not on roof.

unknown 6:09

My husband.

SPEAKER_08 6:09

I'm the caregiver. That everybody praises.

SPEAKER_01 6:16

Well, I haven't had any surgery.

SPEAKER_10 6:20

My chest hurts. My chest hurts for years, I'd say that.

SPEAKER_11 6:23

Um I'm Linda, and I was unroofed almost a year ago, and I feel great.

SPEAKER_09 6:29

I'm Linda's husband, Ed, and so I've been in that pre- and post-surgery experience. We can talk about as I go along a little bit. For background, I myself, Linda's a physician, she forgot to mention that, I think, and so am I, and in gastroenterology. And it's been interesting to sort of have that feel, you know, sort of, if you will, inside medical, sort of outside both at the same time. And that I think that colored some of our experiences both pre and after surgery. For that.

SPEAKER_04 6:56

I'm Jeremy, I was on route a year and a half ago.

SPEAKER_12 6:59

Yay, and I'm Stephanie, I'm his wife.

SPEAKER_11 7:02

I'm Kelly, and I was on route two years ago.

SPEAKER_00 7:05

And I'm UN, although it looks strange. I'm the caregiver, I best friend, God made a sisters. Yay.

SPEAKER_08 7:15

Or was everybody on root at Stanford? All Stanford. You were bulky in Chicago.

SPEAKER_04 7:21

I did all my testing in Stanford robotically.

SPEAKER_00 7:25

Wait, so were you guys done non-robotically?

SPEAKER_11 7:28

Like I was done open, yeah. Yeah, over to it.

SPEAKER_00 7:31

Well, you have it. I have it. Oh, so you guys are the only three that have oh I have four.

unknown 7:36

Okay.

SPEAKER_00 7:36

Stanford.

SPEAKER_08 7:38

Where do you have yours? Stanford. Stanford, okay.

SPEAKER_02 7:41

Yeah, open.

unknown 7:42

Okay.

SPEAKER_02 7:43

So in the uh procedural part of this, one of the things that comes up we see it on the Facebook group, and I also hear it from people who uh respond to us on the program, is the concerns of the caregiver, the people who actually support us. And you know, I will say certainly Teresa sawyer on the work side of things, but but Teresa on the home side of things and everything else, you know, emotionally and physically, even the process to get into the surgery. I was during COVID. So she couldn't help me out. You know, except drop me off at the front door, see it, babe. That's horrible. I'm going in. And you know, I think that put a little bit of an extra burden on it because it was like we're at the hospital, goodbye. You don't know, we don't know. We don't know how we're gonna come out of it. But to to the point of the support that she gave me all the way through, because I I think in all of our cases we're probably worried, we're worried about the situation a little bit differently than the caregiver. But you if you could share some of the things that were going through your mind that were happening as you're looking at your significant other going, I don't I don't know what's going on with him or her, as the case may be.

SPEAKER_13 9:02

There's there's it's almost like there's two dimensions because for me, and I shared a little bit with Jane. For me, this situation occurs, and I just I think I think for me, my faith kicked in, and I just like this we're gonna handle this, like with the ambulance and the heart attack, and then the doctor's appointments. And when I met um, what's his fake, what's his name? Boyd Boyd. Jack Boyd. Yeah, it was like it was it was like Jack Boyd looks kind of like Jeff. He's like straight-haired guy, he's got common boots on, and he's like, hey, hey man, I was like, this is this is this is good. And I just felt really good about his energy, about it. I trusted him, and I felt like I didn't question it. I I did not question it at all. And I felt just like this is all gonna be fine, and that just I had to because you have to, and then there's moments though, like dropping them off at five in the morning at the door. See you later, move the hotel, and it's like shoot, I hope I do, you know, but you don't keep that, you just move on, go to the hotel and do your thing, and then wait for the call and just kind of do your thing. So, so there's like two tracks of reality and just hold hold this energy aware, you know, dropping them off is like I won't forget this picture, especially during COVID.

SPEAKER_08 10:30

You know, uh just threw another wrinkle in the hole right there.

SPEAKER_02 10:34

Man, every step of the way, a COVID test, a COVID test, yeah, drive-through COVID tests, another COVID test was like non stop. My nose is gonna you're gonna be able to do it.

SPEAKER_10 10:48

Yeah, the CR test.

SPEAKER_02 10:50

Oh and then returning home too. And I want everybody to kind of share their individual situations. Returning home, that that's that's when you got sick. I mean, literally, we got home, and she said, I don't I don't feel well, and I think it was just the exhaustion.

SPEAKER_13 11:06

Whoa, wait, I didn't get it.

SPEAKER_02 11:07

Yeah, you went upstairs, remember?

SPEAKER_13 11:09

No, because I'm sick.

SPEAKER_02 11:12

Yeah, it was just just I think it was just all the time.

SPEAKER_13 11:14

Well, I I do think that when you go through something like that, every one of you that has been with somebody with surgery knows you you you click in, it's almost like the mother thing. You know, you kick kick in, you gotta do this. Let me just okay, here, you here. And then later it's like all of a sudden you come down a minute and you think then you feel it.

SPEAKER_02 11:34

Yeah, how about you guys? Because you're still in it, yeah.

SPEAKER_05 11:38

Right, we're trying to decide. We try to be active, like we've just gotten into pickleball a lot, and we love it. So I'll get chest pain then and have to stop a little bit, you know.

SPEAKER_07 11:54

But he'll he's he's pretty caring when when I I try to be, I think I'm probably not as merciful or carrying as I need to be on stuff, and kind of thinking that because usually if we were taking a walk and she would have pain, she would just have to stop for you know three to five minutes or whatever, and then she'd be fine. And so I mean a lot of times I don't take things as serious as I probably should. Like I was telling her I had uh blood clots a couple of years ago. I was thinking, uh, you know, I'd probably walk it off. And then they sent well, then they sent me up to take the x-rays or scans and realizing that uh I said go to the emergency room immediately, you know. So uh but anyways, if and if I hadn't paid attention, I so I I try to be uh very sensitive to what she's going through and to take it easy.

SPEAKER_01 12:40

I'm not unroofed. Um I had all my tests at Stanford. I'm a surgical candidate and had surgery scheduled and backed off, canceled it just because after talking to Boyd, he's really good and he goes, I don't know, we don't know, I don't know. La la la. And then my doctor at the University of Washington said, You're not ready. So I was kind of going at it as a preventative approach, I thought. But really, the surgery is only for symptom relief, and I do really well. I need I have a long bridge, it's 55 millimeters, it's very shallow, and I'm supposed to keep my heart rate at 110 or below, which is hard, but the meds do it, and I'm willing to do the lifestyle change versus the surgery. If I get more symptomatic, I'll pursue it. But I figure things change every day. Yeah, but I can still snow ski uh differently, I can still water ski differently. I don't hike like I used to, I miss that the elevation game, but I walk, I walk all the time with my labs, and I'm tired, but I've always been tired, and it kind of explains things my whole life. I go ski like crazy. Snow ski, I'm like, I'm really tired. I don't know if I mean it kind of makes sense now. I would be just exhausted. So I've always taken naps. I can relate to that. I've always taken naps my whole life, even if I slept, I'd take a nap. And I think that's part of it.

SPEAKER_08 14:07

I do too. The thing is that I've learned through this is her symptoms aren't as bad as probably everybody in this room. No, you know, sleeps, and then you know, wake up in the middle of the night, my heart is clunk, clunk, clunk. This is before the you know that we knew anything about the or I get a Z and I go. And you're like going, yeah, okay, whatever. And then she just kept going and going on this thing, and now I mean I'm just an obus in all this, so it makes sense. I mean, I'm not into the I mean I'm into the caregiving, but I'm not into like everybody else's here. We were all scheduled for it, but changed her mind. And but again, she's functions pretty well.

SPEAKER_01 14:46

I'm 65, I'll be 66. Bo, if I was 40, I would probably do this surgery. My daughter, our daughter's young, 24. So yeah. And and and then when I was gonna do the surgery, my mom, my daughter goes, Mom, I don't want you to do it.

SPEAKER_06 15:02

Like, what?

SPEAKER_01 15:03

I don't, I don't, I'm one of the cry if I talk about I don't want you to do it. That was a big factor.

SPEAKER_06 15:08

Okay.

SPEAKER_01 15:09

And a friend of mine who's a surgeon said, I don't think you should do it.

SPEAKER_02 15:13

So Steve is the the husband looking at it going, Well, are you gonna be okay? What goes through your mind?

SPEAKER_08 15:20

Well, I I just kept going through this thing with her. We went to Stanford, you know, the whole thing, and then she had it scheduled for June this year. Yeah, this year. And a month before that, we went up to the U Dell University of Washington and sat down with the doctor up there. I really like her.

SPEAKER_01 15:40

Let me kind of put a sidebar. Uh, University of Washington stole what's his name, Blair. And then they created a a Micardo Bridge program just like Stanford.

SPEAKER_08 15:52

So she she knows things about it. You don't go into a hard doctor and hey, I got this, and they blow you off like they've done everybody else around you. So I'm sitting there, and this young kid, I call him young, he's probably 35. And you know, she's could be our kid. She's talking, or you know, she's saying, I still do this, this, and this. The guy's just kind of looking at her like, no, what's your what's your problem? Didn't say that, but you just look, and then and she's on I was on Metropopol. And and things started coming back a little bit, and he goes, Well, there's other drugs out here, and I go, bingo, let's try this other thing, whatever it is. And then the then she comes in and she's talking, and what do you? I like them. I mean, they're great. And we're just sitting there, and then finally I just look at her and then go, would you do this if you were if this was you? You know, and I get it, I've been around enough to know that they gave a very good non-answer. You know, it was like, you know, this is this, and going on and on and on, you know. And I and but I was really listening to her, and then we went out to dinner because it was about five o'clock downtown there, and I sat with her and I said, What do you think? And she goes, Well, I don't know. And I go, that doctor gave a very good non-answer, but I believe that she wouldn't do it. Oh, that's the answer. Not at this point, that's these symptoms with this, and that's what I got from her, even though she didn't say that.

SPEAKER_01 17:23

She said she kind of said, You're not great.

SPEAKER_08 17:26

But and so I get it.

SPEAKER_01 17:27

I'm you know just worry about the future, like you don't want to get so bad. That was but then it's a big surgery.

SPEAKER_08 17:35

So they've seen so that may never get worse. They seen so many other people like yourself that are like keeling over, and it's like you ain't that bad.

SPEAKER_00 17:42

I hope I don't hear so. My question is you're here just to hear the stories, you know what I mean?

SPEAKER_01 17:48

I'm just yeah, I'm always looking for information. I research everything. I mean, if it could be done robotically, that would be my preference.

SPEAKER_00 17:55

But you said like by the hand.

SPEAKER_08 17:57

I wonder I know I I look at that going, I don't know why I'm talking, but I look at that going, you know, I can see a guy like my age, you know, I'm 68, and you know, if you go, and I don't do video games, but you see these kids doing video games and go going all over the place. If if I was a doctor and I'm was always cutting or whatever it is, or wasn't doing some of this stuff, and now they stick a video game in front of me, you know, to do this, I'm going like, I gotta learn this thing. But these young kids now are learning this from the very beginning, and this is what they do. I'm I'm just saying this, you know, they they know these little things that they're doing and the movements, and we're shoving, you know, and so I get the younger generation and the robotic stuff can be probably, I mean, it has to be accurate, and so I can see that this guy is a little older guy and maybe doesn't want to be trained that way, but he's been doing that way his whole life, so I I get that.

SPEAKER_01 19:00

So guys so individual, yeah.

SPEAKER_08 19:03

So that guy's saying, I don't want to do robotic, but this other guy going, But geez, I've been doing this for 20 years now, robotics.

SPEAKER_01 19:09

I know Stanford has fixed some people who've been in roof right robotically. I remember Schnickers saying that, but I think it's just so many unknowns now.

SPEAKER_02 19:19

Yeah, the boy does robotic surgery, he just doesn't do it for that procedure. He doesn't, I know he doesn't believe in that.

SPEAKER_05 19:26

Yeah, I think it's just different.

SPEAKER_02 19:28

And I think what's important is other people are listening to this to hear your engagement. Yeah, Steve, you know, with you're aware, so you guys are gonna have this conversation. I have to. We're gonna have this conversation at some point or not. Fortunately, if you may have to work for you, great. You know, that's that's really cool. And uh, Ed.

SPEAKER_09 19:50

I'd say to me, well, striking things before surgery and still even after is the symptoms in this are really not your classic symptoms. I mean, that is that is to me the biggest thing. I spent a lifetime decades, chest pain that lasts more than 20 minutes. It's either a heart attack or it's nothing. I mean, angry doesn't last for 20 minutes, unless it's killing biocardias. That's that's like that's like solid in your training. But in this case, yeah, not true. You know, you can have chest pain for a whole day and not have a heart attack. It's your heart.

SPEAKER_11 20:19

Yeah, and that's that's the hardest lesson to learn, and still think about what he's saying is that both of us kind of blew off the symptoms, um, as well as the cardiologist blowing off the symptoms because we thought, well, this can't be my heart. It's it's just it's acting too atypically to be my heart.

SPEAKER_09 20:36

I'd say blow us a little strong, but yeah, it's always hard to figure out how to grade it. And uh I told her a lot of times that story is before the surgery, by the time you start to figure out this is really something, we're out snowsharing and the cascades, hours from anywhere, and I mean hours in the trailhead, and she's having chest pain. So, oh, do I call for a helicopter? Well, I got no cell phone anyway. Do I get a cell phone to get on this? If you walk and it's really good, you know, and so you we made it out. But it was really a lot of struggle with that means you're having chest pain in this situation, it's very different. And uh, in that uh that's the biggest thing as far as to me, they are real, and trying to understand you know where it fits into things and how do you provoke why does it get provoked different ways by emotional episodes as opposed to against it's so different when they walk up the mountain, no problem next day, go down the hall and it's giving you trouble. That's there's no pattern, that's the learning. Yeah, that's that's that's the biggest thing about this condition. I think it's because it's so much against every other cardiac. And I think I said I hear people talking about well, surgeons, you know, exclude other things is that is the symptoms. And my background is in GI spend a lot of time talking about chest pain and oh, it must be a GERD, it must be a reflex. Yeah, I'd be very careful about that. We're always careful because that's how you know if they can swear it's not your heart, then maybe it's your GER. But don't be saying it's GERD if there's any question of being your heart. This makes it seem more complicated to say this. kind of situation where it's maybe typical. Sorry. No, that's definitely everything. That's why I did it because I thought you can explain that. I know. We think we know it. So that's sort of while I'm talking, you know, post-surgery, you know, it's it is it's difficult. I mean Linda had a full strenotomy, which is and it hurts.

SPEAKER_11 22:41

And um honestly having astronomy and having pain from that is like I can deal with this. I have pain medicine. I know it's going to go away. I couldn't deal with the uncertainty of chest pain coming on at weird times or the worry about yeah is this going to kill me? Is this going to stop me in my tracks? The chest pain from the surgery is like yeah big deal. This is a blow away. That's good. I'm he helped me with all kinds of things I couldn't you know you're drunk like if you feel like T-Rex you can't you're like this all the time your hands in a cup of coffee and but you know once that was gone I just feel so good.

SPEAKER_09 23:24

Yeah he was he was helpful yeah post-reveiling I was going to think back on this is recovery is and and my boy points this out and I absolutely agree this is not a oh I'm just gonna gradually come better better this is a stair step kind of thing and some steps are down as well as up I mean for months I'm doing great today you know another day why I just feel horrible and so it and and especially that's where the emotional part comes in because once you've gone through this kind of thing I think it's like oh I should be all better now and at the end of the day you don't feel so better it's it's terrible and you know I think your partner has to realize yeah here she's not feeling good today it doesn't mean things are really gone the heck is this this is not a good day. Tomorrow's maybe we'll be better and you just gotta kind of accept that that's what's gonna happen.

SPEAKER_11 24:12

And then I would feel guilty for slowing him down. It's like no I don't feel like taking a walk today or I can't I can't go out and help you garden or something like that.

SPEAKER_02 24:21

But everybody wants to self-diagnose or diagnose we've got this this this this we try to stay completely away from that just because everybody's so uniquely different. Yeah and I think to to the point of look meds are working for you for us it didn't it didn't work. Yeah we're going shoot I wish I could have just taken the back you know and it's so easy to deny all the time which is what we tend to do that this can't be me. I'm looking at everybody in the room we're all in pretty good shape and we all are active we're varying ages I guess there's probably a spectrum of Kelly you're probably the youngest in the room and you know there's there's a 30 year gap between all of us here but we all had the same situation and you know to to that point I think we look at those the the medication posts that that's what screwed me up. I didn't realize there was some stuff I was taking that they didn't tell me oh no you can stop that now made me feel off oh you know it was it was but I didn't know it I just said it don't feel right you know it kept doing and pushing and doing all the stuff you're supposed to do and Teresa would say what's wrong with you you you you seem like you're okay but you you're you you're just not yourself right and then when I realized oh that's that drug you stopped that one that's good and then it got a little bit better a little bit better. Jeremy your situation was a little bit different because you were robotic I was and so so tell us a little bit about that because I I I was blown away the day after surgery I'm from Chicago yeah you were in Chicago he's running around Chicago were you really wow wow we were told to go for walks wow the Chicago tour a couple days later steroids you're at the University of Chicago yeah tell tell us about it so unlike a lot of the people on Facebook praise God for it and a lot of empathy towards the struggle over the years I I had a heart attack I was at yeah I had a heart attack and of course my wife and I are in healthcare and I get home I have symptoms in the afternoon and uh she looks at me and she's like you don't look good we need to go back can I ask how old you are 47.

SPEAKER_04 26:39

So what is 45 ish when I started 45 yeah and it was obviously sudden onset I had been feeling weird for about a year and a half or so before that and and so yeah the symptoms were I was pale by I was my blood pressure was higher way higher than it should be because I'm relatively healthy. I'd have to go to the ER but I just like I'll be back there tomorrow I'll do EKG so we did and then end up yes my cardiac enzymes are elevated I go to the cath lab the cath lab doc who's fantastic was like you have no platform and you do have a bridge but bridges don't cause these kinds of problems but but I don't know what's going on so you I think you might be having spasms endophilia dysfunction and so I'm gonna give you some nitroglycerin and you know it'll get better over a couple months. Well the next two weeks I went through the entire bottle of nitroglycerin it was not getting better it was getting much worse and uh so then started the journey of like what do we do where we go insurance which is another nightmare and so long and short I wind up on Dr. Travell's front door down to Sanford and it's okay long it's all right yeah they were amazing similar to everyone else they were like did you have have you had these symptoms your whole life like yeah I was a walled active sports person big big and you know from from a young age and you know through high school I said well did you get short of breath did you this I'm like yeah but I mean that was at the top of my game so of course I might be short of breath like no and and their delivery was just so amazing Travel just kind of giggled at me and she's like no that's not normal and they're just their they were fantastic I mean from start to the finish their advice their counsel their professionalism was just top notch and so go ahead support Philly we saw boy then we saw Boyd well we tried meds and they were real yours I love their approach because we're like we do not want to do surgery we don't want to do surgery we want to try to do this with medication and so I'm working with their their team and which I still see regularly and just working on the meds but the meds were getting so intense that like I would take the meds in the morning I couldn't work obviously um and the meds were getting so intense where I would take the meds lay on the couch and then I would wake up. Oh yeah blood pressure was just I was taking beta blockers calcium channel blockers dilators we went through quite a few okay regiment changes frequently we we we would every few weeks we go through it and like I don't know every month or two or whatever we would change it up long or short it just wasn't working so I met with Boyd and he's like oh yeah you're definitely a candidate but check out the Facebook page and so he's like you're gonna you you can filter through and and so the whole way home whatever five six hours drive home you know I read through everyone's comments and it was actually that that made me think oh I want to do robotics because from what everyone says yes from the surgical side or surgical perspective three months you'll be fine you can go back to work in three months I'm lifting 400 pound people up alone in a hospital bed in three months my steronomy is going to rip open like if I'm 80 and I just have to open hard and I'm retired sure you know I'm not doing that kind of work. So I'm like I'm gonna lose my insurance I'm like gonna get fired for surgery like there's no way so there's a big disconnect and this is from people who get the surgery the surgeons that are saying three months is good and it's just the the truth is there's a huge gap. And it's like yeah no there's no way because I take care of people who've ripped their you know in the ER like we get those people who've done a little too much I'm like three months is not enough time and so I started this journey to try to do the like find a robotics so I went through and tried to figure out the robotics and I settled on Balkey because of his reputation and it was a fantastic meeting and ended up going out there and it was again in my opinion just as good as Stanford and professionalism of it. Different obviously it's a different city different perspectives but awesome and he was incredibly good but his big thing was you know get up and get out and so yes very quickly it may have been a little too quick and so I had some internal bleeding which ended up could have been from walking around Chicago steroids are so so they did a block and the surgery you know obviously and this goes to show that just the testing how we still have a lot a long way to go even our testing the Stanford's testing is you know clearly one of the best in the world if not the best in the world and you know there I can't remember the exact number like two or three centimeters maximum it wasn't very deep. Well when Balkin got in there it was the entire LED you couldn't even see my LED wow it was entirely the thing was bridged now you know they're looking inside so it's I get there's a huge grace period which you have to give and it was very very deep which that's not what the tests were showing. And so he went and he didn't just do the entire LED he did what he took the whole thing all the way from the well he had to go up a lateral that was like four centimeters went up that to find the LED and then went all the way down. So the surgery time was significantly longer but and yeah it took a lot like it's oh so much better than astronomy which I agree not having experience atstronomy but hearing the story is that like in the robotics is awesome. Now those metal rods going through your ribs and that was like having a whole ribcage of broken ribs that's not comfortable but the steroids were great so yeah we did a whole tour of Chicago day and a half after surgery we just walked around all of Chicago literally all of Chicago do the boat tour which was not so bad now.

SPEAKER_03 33:50

Yeah which was by sitting down period and then by what like four o'clock in the afternoon my wife looks at me and she's like you don't look so good are you a nurse?

SPEAKER_12 34:04

Yes we're both you're bulkers okay and you might sound like there's another part of this too obviously you're you're empathic and emotional and I appreciate that too even conversations but you have three children four four how how did you guys deal with that what what were the discussion this is serious stuff how did you talk about it in the house well I with each child it was different I guess they all deal with things differently how old are your kids we have a 16 well there's now all they're 16 18 21 oh wow so the 24 year old is out of the house and so was 21 year old at the time he just moved out though and so after the heart attack for the three youngest it was very difficult that and there was a lot of fear or some of it was avoidance they didn't want to talk about it and then would slowly approach it the youngest was probably the most talkative about it. And then when we brought surgery it was just such a mystery to them I don't think they really understood the complexity or the risk with that why we're taking so long because we did take a long time to side because we walked through all the medications trying to do it all non-invasively first of course and then go to see Stanford and then we're changing our mind and going to Chicago. So it was a lot of confusion for them but patient and loving and we got home that's why my understanding I was very focused of course so well and being nurses yourselves you have a different understanding than most of us elements of it technically you're looking at it differently whereas for those of us who maybe aren't this well versed we just don't know the reality or the significance of it.

SPEAKER_02 35:55

Although in in both cases you may know more about it thinking oh gosh it it's more severe because you understand it differently whereas we don't so it's the uncertainty of the understanding which is better that we were bundler knowing less.

SPEAKER_04 36:09

I think it's personality based like some people are better negative some people are not I need to be informed of all the little details and research everything.

SPEAKER_02 36:23

Every little thing yeah um I mean I'm like that a little bit like we're not quite every little thing but like I needed to know like wait you know like and all even with and boyd was so incredibly patient with my questions and Balky was as well where I'm just like I would block the question I'd say it one way he'd give me the answer or both of them would give me the answer and then I would re-ask it afterwards in a different way because I wanted to see all the angles but I I mean yeah I don't want to cry again so I don't quite the dirtiest how about you guys because you how long have you each other about 24 years 24 years.

SPEAKER_00 37:14

Oh wow that you're bored thank you I'm double that it's kind of weird to talk about my perspective you know what I mean yeah I mean we were we went to the same church she's 11 years younger than me and so when I met her she was just like a kid she was 17 I was 29 and we were just friends and then God truly it it's been a long journey and so she was just like a friend and then I knew that she had a heart condition didn't know anything I'm I'm a music teacher very unhealth I I don't really have health issues and so I didn't know anything. And so I just didn't she had heart issues after that like she couldn't go to college because she was bedridden and those are the years that I think I got to know her more because I don't know it was like oh man she dead like I couldn't believe that some that age wise she looks like this she looks like a Barbie doll to me. And then like but she has all these problems that she can't even like set up you know it was very odd. Yeah and so me being very ignorant I was like okay I'll just go over and be with her she's a lot more like mature and old soul than she I thought she would be it just started very casually like that through church. Yeah and for me I all those years prior I never cried I was just very like methodical like dun dun dun and I was like ready for anything whether she lived here or not whatever. And then but when it recurred and she was like in the hospital again for her heart I like totally broke down. We had another friend there who's a nurse um like I'm her support she's our support you know we need like branches of support right and I said to her like why am I like so broken up now although she's had worse things go through in the past and she goes well you guys are like light years closer now and I was like oh okay like I didn't realize why I was so emotional at that time when I thought it was over and it was recurring and then so fast forward to kind of Bridgie stuff is we saw her cardiologist again and basically he said you know you're gonna just have to learn to live like this because he did everything he could and he just said you have an arrhythmogenic heart you just get every arrhythma that's possible and that's the extent of it and then we did hear like she had a yeah so she finally had a CTI angiogram showed the bridge and like everyone else saw they go yes you have one but it's benign and she did her own research though and then when she did she did Stanford it just happened to be Stanford and she's like all the symptoms every single one she has big no so she was like hey I should look into the but then the cardiologist it and it's no blame to someone specific because I believe that cardiologists now historically they're not taught this and so why would they believe differently you know it's just a time of change I feel and you guys are all the guinea pigs and we need like a longitudinal study right to see what happens to you in 10 20 years which I'd love to do. But she said you know they do the surgery and he just was like you know I wouldn't recommend because it's a big surgery open heart and I don't know that it'll help you. So that was kind of his stance which I can't blame she basically very nicely pushed for a referral anyway and he said all right it could go and so we're like just give us the paper it was kind of like that and she like ran with it and she did it and then what's funny not really to blame now he's like oh I'm so glad you did it you know I'm glad that's helped you and kind of like as if he was supported the whole time which is fine because the it it has produced change because his um PA, him the cardiologist that she went to with her hospital even another cardiologist that doesn't know her personally who works there would come up to her now and say hey I heard about your situation so if I hear another person with a myocardial risk I take it seriously and send them and that's what I've heard from him and how long ago was this he had unroofed two years ago two years ago yeah and asymptomatic which is that's great. She used to have 3000 arrhythmias per month and then she has zero and we'd hope that there's no regrowth or weird things but we don't know we just don't at this point. And yeah for me I mean what I'm my perspective is yes it's not one cardiologist's fault that it's not recognized because again that that's the training that at this point in history but it's it's at the cusp I feel it's kind of exciting that it's changing. It's like any other thing that I don't know like the or like TB that is a point we didn't have those treatments or it was seen differently and it's kind of like the new thing of a heart issue that's like oh it's not benign and more percentages have it and who knows blah blah blah and it's not GERD you know so to me it's like exciting to look at it and I just wish that education could happen faster. I know yeah and so I I don't know but it seems like every cardiologist actually sees a patient succeed or benefit from it, their belief system changes. So like even the older ones who knows maybe the younger ones are getting taught differently now but I just wish that it would somehow get it out there. Evolve faster yes just get the word out and because even before any of this even before meeting her just on a side like I would hear random you know like news stories about this healthy person they were kind of like you and like jogging along and he just dropped dead right and they had no no other symptoms and like decades ago and I'm like that's really odd. I wonder if that person had this and she started that study.

SPEAKER_02 42:53

Yeah the guy running on the treadmill so I think what you just showed as soon as the degree of engagement that the support person gets and I know for Teresa oh well that's all sweet craft I don't know it's important it's important there's something about like men welling up it's just like oh my gosh yeah the significance of what you guys go through and absorb you know here you're a music teacher you're nothing about health yeah and and here you are telling us the the specifics of the condition and and how fortunate we are to have medical profession here including some of the gastroenterologists because that's what we always hear. You know oh it's we're going to start looking at CORD I was scheduled for the number GIRT my heart attack beat me to it so they didn't have to go through the truth came out we avoided that one

unknown 44:00

Instead.

SPEAKER_02 44:02

Well, it was up there just a part of the body. As you get closer and closer to the decision, or if you don't have to, fortunately, maybe the medical medical side of the medicine side of the medication side will take care of it for you. You know, the significance of having somebody.

SPEAKER_01 44:28

Every day. Depends how you feel. Yeah, it's always in the back of your mind, especially when you wake up at 2 a.m. Like Yeah. You don't, yeah, there's always that fear of a heart attack. Or just dropping dead out when I'm walking my. I mean, it's not a lot, but you do think about it. Just like are if you don't feel good, it makes everything worse. You know, if you don't feel good one particular day, I'm like, oh crap. And then the next day feel good.

SPEAKER_06 44:52

Yeah.

SPEAKER_01 44:53

I don't know. You can't sit there and think about it all the time.

SPEAKER_04 44:56

I mean, I don't it's hard not to when you're feeling it every day. Like my symptoms every day were the exact same feeling that I had when my troponin was showing that I was having heart damage. Did you just exact same thing terrible?

SPEAKER_01 45:11

I mean, did you just have that impending doom feeling constantly?

SPEAKER_04 45:15

And I you end up kind of going, do you want and I can't even imagine what my wife would do.

SPEAKER_12 45:20

He became my patient.

SPEAKER_04 45:23

To the point that we had a conversation about it, and I was like, I don't want to be your patient. I want to be your husband.

SPEAKER_12 45:31

Oh, you were sick every day.

SPEAKER_04 45:34

And that's a tough one because every day I thought I was gonna die. I would take my medicine, I'd pass out because my blood pressure would go so low to try to deal with not having a heart attack. And you're like, and I'm just like, I literally would have to go, okay, I'm just jumping off the cliff. Hopefully the parachute opens. You know, you get caught up in that. I became her patient, and so it became a problem to solve. If you go through this whole experience, you go, okay, everything's gonna change. I'm gonna live life different. We also live, I don't know if this is a Western thing because we live in the West, or I was like, you know, maybe probably not because it's a I think a human thing. We're like we have to remind ourselves, okay, or I do at least, because we get caught up overtime. I give overtime we can pay for this, I can do this, we can do that, life, yada yada yada. And then it's like a stummy back like nope, I want to say, look at my wife's face just for five minutes.

SPEAKER_06 46:29

Oh like it's a big deal.

SPEAKER_04 46:33

Yeah, or I want to go for that that ride or that run. I go to the gym now. I couldn't do that. And you're like, it's a big deal, like that's fantastic. I can actually get some of this coded fat off. And it's like you're like, okay, as they're like little things where friends like, you know, like different priorities now. Right. And it's hard, it's the thing is to remind yourself that and not to lose it over time when you get back into that complacency of like you start complaining about this completely about that. You're like, wait a minute, I'm alive. That's right. Like my trip to Costco means something completely different now. Yeah, it's so rewarding to be like, oh, that's to sit there and just like look at people and be like, I see I see your soul now.

SPEAKER_00 47:23

Yeah.

SPEAKER_04 47:23

You know, I get to spend time with your soul. Right.

SPEAKER_01 47:26

And this isn't just an irritating person.

SPEAKER_02 47:29

Still like as the caregivers, as the caregivers, and and again, for the non-unrupt, it's gonna be a little bit different, but I think you guys will appreciate it. You guys, when you when you look at your significant other response now, do you look at them differently? Has something changed in their their summer?

SPEAKER_13 47:48

For sure, I do. I I hate to say frequently, but I am very mindful of some of the irritations, and I think about the alternative, and I think just bring it on, just keep irritating irritating. That could be irritating, but you know what you're here.

SPEAKER_02 48:13

Can I get away with it or is it because you do, yeah?

SPEAKER_13 48:20

But it's but it's it is you're still here and you're healthy and certain things. Right. You you know, it's funny when it's like anybody, you have something happen to you, and then it's really easy to take it for granted that you know, I forgot that I had that pain.

SPEAKER_05 48:36

Yes.

SPEAKER_13 48:36

Oh, it's gone because it's gone.

SPEAKER_05 48:38

Yeah.

SPEAKER_13 48:39

Whereas when you go through this kind of a thing, I think it's a little just more significant even for the person who didn't go through it. Because when you're a pair, you're a pair. And it's I remember one night when Jeff was still in the hospital here in Sacramento, and then doctors were all around him saying, We don't know. We don't know, we just don't know. And then we were saying goodnight, and he was saying in his chipper way, you know, all bad news, it's all bad news. I was thinking, I was thinking like square words, like okay, this might I had that for more one moment that he could be gone, and that was not that was bad. That was a bad reality that moment. Otherwise, um I felt pretty strong. But yeah, you do you do learn to not to appreciate more for sure.

SPEAKER_00 49:32

Nuts with this most for sure.

SPEAKER_02 49:34

And you you from a medical perspective, I mean maybe look at it a little bit differently or not.

SPEAKER_09 49:38

Yeah, I don't know. Time to take how it's it's interesting. Linda raised her hands like, you know, I thought I was gonna die. And I went, I don't know. I I honestly thought I know she's a very strong person. I just never thought she was gonna die for the most part. There was a time when in the ICU and she still intubated post-surgery, like, huh? This is actually you know a little bad. But I I do I look at her differently after this, no. I our relationship's changed in some ways, and the main difference I can say is you know, she's uh much, much better. There's still sometimes some symptoms with activity, and I have to be the governor now. It's like, you know, you're not supposed to be walking that fast. You don't feel so good. Or didn't you did you forget to tell me you're having a little shortness or met today? So it's a there's a different dynamic.

SPEAKER_11 50:24

He'll slow up on a trail, and I think, oh yeah, I know why me to slow up. I know why you're looking at that flower. Do you want me to stop looking at that flower? You never know.

SPEAKER_09 50:39

No, so yeah, definitely there's some change. You're cooking more now.

SPEAKER_11 50:42

Oh, yeah.

SPEAKER_09 50:46

As the medical party, it was interesting. I kind of watch myself, I just retired the last several years, and the ICU is sort of like I've been in the ICU before. I know this works, you know. You probably have the situation, you're kind of like you want to be the nurse, the doctor a little bit, but you know, that's not really who you're supposed to be right now. You're supposed to be the partner. There's definitely an interesting dynamic to try and walk that line. And I I probably stepped over to the wrong side occasionally on a different side. I don't think that's wrong. I mean, maybe you need to acknowledge who you are. That's I guess the thing about it's like, yeah, I'm I'm really permanently espoused by him also. Uh you know, I know stuff too. And I shouldn't deny that. We advocated for it. So you have to exactly that was it, that was exactly the word. You just beat the find that way to be the advocate without being too much of a email. You gotta cross the line sometime, but not too much. And that's like that's the challenge, I think, when you're have that more background.

SPEAKER_12 51:39

And I I don't know, maybe it is the healthcare thing. I had that same uh feeling. I know he would feel like he was gonna die, and he looked awful and he wouldn't sell. But in my mind, I kept thinking, okay, this is the next step. I didn't think we're gonna die. I thought, okay, this is the next step. Yeah, and now, yeah, and now we're gonna try this. It's just time to play a little bit.

SPEAKER_05 52:01

Did your kids, were your kids, thoughtful of you not feeling good? Because we have a um son with four children and they love to wrestle. Oh you know, attack dad, you know, and wrestled with a be cautious with you.

SPEAKER_04 52:16

Ours are older, true. There was no wrestling.

SPEAKER_05 52:19

Okay, but not at that time.

SPEAKER_04 52:20

Now, post-surgery, when I was like on the way back, started to do my own cardiac rehab, the youngest likes to do um, he likes to push those upcoming buck buttons. Yeah. And what was fun about it was now I could. Right? I wasn't gonna have chest pain to think I was gonna die. The fact that I was like, all right, it's on, buddy. And then to have him be like, old man's strength is real.

SPEAKER_06 52:56

Even old.

SPEAKER_10 53:00

Yeah, even though you're ancient, that's true.

SPEAKER_12 53:02

It must be old, he's forty. But they did step up and help out more of the things that I would needed. That's good.

SPEAKER_05 53:10

Yeah, that's good. Pulled together.

SPEAKER_12 53:13

I'd say the boys were a little bit more cognizant than the girls. And and do you look at him differently now? Do I look at him? I was thinking about that question, but so how I look at him differently is I because we didn't know he was sick. And before, you know, we thought it was COVID that he was gaining weight, he was sort of rather sleepy, he took naps, lots of naps, but he would work night shift before. He started using an inhaler. We thought, well, you know, now he's getting some asthma just as we're getting older. No, these are all symptoms of what was happening, and I I missed that. We both missed it. Well, so now I look at him like, wow, his color is good. He's more active. He can walk around. We use Costco as an example just because before he couldn't push, he'd have to have the cart, but then he couldn't push and we'd have to stop. And now we well don't zip through Costco because it's but we're in Edinburgh and we hiked to the top of that was fantastic. Yeah, I mean, tears because he couldn't.

SPEAKER_04 54:17

So we went to Edinburgh after like it was months after, but before I went back to work. And uh it was all cobblestone, and so we took one of the hills, and the steps were, I mean, it was up to the castle? Uh no, not even the it was one of the um where the the Athens things are, and uh the pathway up there is there's no way I would have been able to do that. And so I took I took that, I took that hill and just walking wasn't to race.

SPEAKER_12 54:50

Sure. To me.

SPEAKER_04 54:54

And I took that and she's huffing and puffing behind me. And I get to the top and realized I did this. Yay. I sat down and weeped for her.

SPEAKER_12 55:04

Yay. So you just look at their strength now. That's great. You guys walked through or you're walking through it at a young age. You guys are determined. It's impressive.

SPEAKER_02 55:16

I hope you enjoyed the conversation. And notice what I noticed at the end. How supportive those caregivers were and still are to each of the significant others, spouses, the individual with the myocardial bridge. We couldn't have done what we did without them. We can't do what we do without them. And to them, a great big thank you. Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website, myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. The views and opinions expressed in this program are solely those of the host and the guest and are not intended to provide, nor are they a suitable substitute for professional care by a doctor, therapist, mental health professional, or other qualified medical professional. Imperfect Heart is a production of Hear Me Now Studio.