#6 What happens when your heart doesn't perform as it should, and the answer isn't clear? In this episode, Rob Thornett reveals his fight against an elusive heart condition, his eventual lifesaving surgery, and the aftermath. He and Boots Knighton discuss the steep learning curve with medical terminologies, the power of patient advocacy, and the unspoken toll of being misdiagnosed. Rob also uncovers fascinating insights about the genetic links of myocardial bridge conditions and the remarkable role of Facebook support groups. Experience their stories of recovery, resilience, and the community's role in healing.

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

Thanks to Denise Hardy for your support and believing in me. linkedin.com/in/denise-hardy-30a51086

Music by AudioCoffee

0:00 intro

1:30 Boots explains her reason for bringing Rob onto the Podcast.

2:10 Rob summarizes Boots's story and how they came to know each other.

2:50 Rob tells us about his teaching career and how he always had a nagging "issue" and how many of us Heart Warriors are told we have anxiety

4:20 Rob dives right into the myths of myocardial bridges

6:00 Then, while in China, he began to really struggle

7:40 He rattles through the various ER visits

8:10 He begs for a heart CT and offers to pay in cash at a rural Chinese hospital

9:15 Rob notices there is "note" on the Chinese CT report and pushes for translation

11:10 Rob finds himself infront of a Chinese hospital wondering what to do now with the knowledge that he had a myocardial bridge

12:45 No one found Rob's myocardial bridge in the United States and often patients in the US are not told that myocardial bridges are found

14:00 Boots emphasizs the importance of reading your own doctor's reports after doctor visits

15:00 Rob gets to work trying to find someone in the US to help him

16:00 Stanford is the main team in the US for myocardial bridging

17:30 Rob walks us through how he got insurance back in the States

18:00 Boots shares which arteries were bridged on her heart

20:30 Rob explains the holding pattern he entered as he waited

21:30 Rob begins to deteriorate even as he taught school

23:00 As Rob waits for Stanford, he unsuccessfully pursues robotic surgery

28:00 Side story: Rob shares stories of other patients experiencing the issues with getting diagnosed properly

28:00 Rob finally had surgery at Stanford and walks us through the process

32:10 Boots shares her surgery process during Covid

40:00 Rob goes into the Facebook support group for myocardial bridging

42:30 Boots reflects on getting to wake up every day

44:00 Rob goes back to work after surgery 17 days after surgery!

47:00 Doctors who are doing robotic surgery now with success that have been shared on the Facebook site

49:00 Do not let a doctor do a bypass on your bridge!

52:00 Six months post op until present day

52:30 Endothelial dysfunction explained and how it takes time to heal

55:00 Boots reflects on walking the day after surgery as well as her recovery

57:00 Boots has been in a master class of learning how to listen to her heart

58:40 Mayo would not have unroofed Boots and she pushed back

1:00 Boots feels she's on bonus time

1:02 Rob explains Lipoprotein A and how it affects arteries

1:04 EECP to help expand arteries to stimulate their growth to treat endothelial dysfunction

1:08 The role of social media in saving Boots's life as well as so many others

1:11 Rob's role on the Facebook group site

1:18 Boots talks about the importance of validation and knowing we are not alone

1:25 Stanford believes that myocardial bridging is congenital

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I am your host, boots Knighton. Today I interview my fellow Heart Warrior friend. Rob Thorte. Rob is a former Myocardial Bridge patient who had Unroof surgery at Stanford in 2018. He is the administrator of the Facebook Myocardial Bridge Support Group, which is how I came to know him. He also wrote the Wikipedia page, Paige.

I'm Myocardial Bridges, as well as the FAQ document found on the Facebook site. Rob is an educator and a writer who teaches college and secondary social sciences and environmental science. He has taught in seven countries and was first diagnosed with the myocardial bridge while teaching in China. In fact, you will be able to find his Chinese medical report.

Let's dive.

Track 1: Rob, thanks so much for being with us today. I first became acquainted with Rob through social media when I was embarking on my heart journey, and thankfully Rob was so generous in guiding me along at the beginning.

just fill us in.

rob: Yeah. Well, thank you. well, it's great. It's great to meet you for the first time because we did talk so much on, on Facebook. when you, when you were looking for a diagnosis and you were one of the people that came on and was asking all kinds of good questions. And so I think your case moved along much faster than a lot of people because you were just kept pressing forward with it.

In other words, you didn't, you, you could see something was up with what you were being told by your doctors and you knew it was like not quite right, but you didn't just take that and say, okay and kind of scratch your head for a year. So you, you actually went forward and really, kept asking me questions, asking other people, like are taught doctor's questions.

Then it really moved fast. So I really remembered that cuz not everybody does that, you know? So it's

Track 1: Mm-hmm.

And long story short, I became an international schools teacher. So I live in Panama, uh, for the last three and a half years. and I've taught a bunch of different, uh, countries, about seven different countries. And, I had the issue my whole life. I never knew quite what it was. You know, one of those like, like so many people on our site, you just had something you knew was off and you just don't know what it is.

And went to probably the emergency room type of clinics about five times, you know, in Northern Virginia. times, pointing, pointing right to what I know now was the myocardial bridge, like pointing right to it. Telling people that I knew, oh, there's something going on right here, . And you get the eye rolls you get the, oh, there he goes again.

head because there is, there is an, it's, it's, it's, it's ironic cuz there is anxiety, but it's anxiety caused by your, your heart being, having it, uh, main artery that feeds it squashed every heartbeat, you know?

So, which tells the, the brain is, is a, we're not getting into oxygen here. So basically, after a lifetime of, I've always played sports, I know you're super athletic, right? You ski, you're place doing stuff. that's a myth we can de debunk right off the bat, which is a common myth that people are told by doctors, oh, you couldn't possibly have a myocardial bridge because people with myocardial bridges, they can't do anything.

They just sit there, they can't do it's complete nonsense. you have a professional athlete named Bobby Ryan, who was a professional MLS soccer player, died of a heart attack. Only thing they found myocardial bridge. worldclass cyclist named Mario Sini Sprinter Bridge. Had to stop cycling the last couple years, had some kind of surgery.

So, makes a lot of people feel better. And always give the same example, but we had a guy on our site who was a, competitive cyclist. He was doing the long distance cycling races he said, I, I'd spice bicycle like 35 miles, something like that. around, around, Shoreline came back and that was felt great, came back, sat down to write some emails, and then I passed out just like writing some emails and that, that's a lot of people's experience, you know, they exercise.

so long story short, I was teaching in China, this would be 2017, no, I'm sorry, 20, beginning of 2018. And. I came back from a, from a break in the western China up in the mountains, a high altitude city called Ku mink. I was up and the altitude was killing me, you know, cause you already, you're not getting, giving enough the oxygen to your heart.

I had no idea why. I was like, what's wrong with me? You know? And I saw people from other countries coming and visiting, you know, rugby teams coming in. They have running around and I could, all of a sudden, I could barely walk down the street 10 blocks to get from my hotel to this restaurant up with Uett.

And I was like, there is something wrong here. So, after a long story short, I, I came back to a regular altitude city called Shein in China, which is across from Hong Kong where I taught and. The day I came back, the night I had some kind of episode, uh, I, I don't know what it was, but, you know, maybe a piece of plaque broke off, like, as they say, right before the myocardial bridge and got stuck somewhere.

I know what it was. He starts screaming, go go to the doctor. Go to the doctor. I was like, okay. I know, I know, I know. He's like, no, go to the doctor. I was like, okay. So, first I was gonna go across to Hong Kong, which is more modern, et cetera. Then they told me, okay, that's gonna take forever. Just go near in , a pretty modern city.

So I went to the emergency room. I'll cut through it. Basically, I went to the emergency room times at multiple hospitals. One told me I had gallstones or I might have gallstones. Then they checked for gallstones. No gallstones. Then I went to another emergency room on the other side of the city.

I sleep fine. You know, it's not the problem. need a heart test. I need a CT scan. Can you do it? You know, and I'm like, well, I don't think you have a problem. I'm like, can I pay cash? ? I paid like, I think $600, I forget what it was, six, $700 cash. Went out to a suburban hospital, got the test out there.

This is, took me about a week to get scheduled I'm all, I'm just doing this alone too. So, and went out there, did the ct. , something else too, I think a brain CT or something. I don't know what, but, but the chest ct, long story short, revealed well, first of all, I came spitting out of, of a, of a, almost like a vending machine.

It was like a piece of film, you know,

Track 1: Oh gosh.

rob: piece of film with all these little, you know, little, uh, yeah, little frames on it. you normally see that on your cd, but my CD didn't work and so I was like, it was all in Chinese. So I'm like, oh God, so can you, the film you, you put your number into the machine and it spits out the film.

He just looks at it and he is like, no, it's okay. , it's okay. And I was what? Uh, but I look at the bottom and there's a little note at the bottom. you know, like something colon, something in Chinese. And I'm like, well that looks like a note. Like something beyond something. You know, like what does that say?

So he is like, I don't know, can I, can you translate it? He is like, okay. So he translates it bing translate cuz Google's blocked in China. So bing translate says bridge left interior descending artery, mid l a d, mid left interior descending artery. I'm like, what that? He's what? No, it's okay.

It's okay. It's no big deal. And so I I, I was standing in front of this kid just like, okay, they found something, they gave me some excitement that somebody found something. You know that feeling right When get that first something

So somebody yeah, somebody finally found something, right? 45, you know, you're

rob: Some kind of valid Exactly. Some kind of validation like, no, it's not just you, it's not the eye rolls and everything. And so I, I binged it, I, I, uh, searched it right there in front of the guy, myocardial bridge, and I, I found his, I said, you know, normally benign but can cause this, this, and this. I'm like, oh, that's it.

I said, and I said, it's not okay. this guy and I walked out, right? So felt like, like I had some possible, you know, like you're a ship and you've been lost for like, forever, and you finally found some, you know what I mean? Like, you see a glimmer, like a dove, you know, whatever, flying overhead, going somewhere, some island somewhere, you have a clue that there might be something.

I'm like, just this guy staying there. Just American guys, you know, broken Chinese. Like what do I

do

And so, it's always remember that, just that feeling of staying there. Like, I'm just like out here alone, but I got this one little tiny piece. I got this one piece of knowledge I didn't have before.

And you know what I mean At least I got that.

Track 1: Right

rob: So I went

Track 1: and

I, if I interrupt you,

I'm just

still stuck on the fact that you're looking at this report in Chinese and you had, you were able to glimmer from it that there was something noted there, like, I'm just still there, because could have just walked away and not ever had that translated for you.

it You know like

Track 1: Yeah. It was very, I just think about the awareness that that took, and then for you to press this, this young man to No, please translate this for me. And he was ready just to like, see you on your way, and you're like, no, no, no, no, no.

rob: Yeah,

Yeah

Track 1: that's, the, that's like PhD level advocating for yourself.

But anyway, continue

rob: Well, just, just to make a connection on that to, to other people's You know, probably your case too, that, you know, that's in China, you know, that's a kid in China doing that, telling me something that was not quite right. Okay. He can be forgiven. My, he just, and he's a nurse in China, whatever. Not cuz it's China but cuz they have some smart people there.

I don't know. , if they

make they make electric cars in that But but But, anyway I don't know what, but like, he deserves the medal. So it's not just like China has a lot of smart people. Let me, don't, don't get me It's not, it's not the China problem. What I was gonna say was that, okay, that's that situation, but you know from the site, right?

We have people on our site at major hospitals. I won't name any but Who had the diagnosis on their report, and then it took 3, 4, 5 years for somebody to actually tell the doctor saw it right there, didn't even bother to say it to the That's a bigger problem, do you know, than some kid who's 22.

You know what I mean? That, that a doctor who should know better and just, you know, anybody keeping up with the medical literature ought to know that Mark. I mean, it's, it's long been 50 years ago they knew Mark already s were a problem and were doing

so,

Track 1: And

I mean, you have to go to school in order to read your own reports, but it's worth it.

rob: right

That's right. And, and that's kind of where I was I at, at that the beginning stage. I was at the lost, trying to figure it out stage. so like a lot, I, you know, now it's different. Um, this is like over four years later, but that's why where I was and it wasn't that long ago, so, you know, I totally remembered that.

And so how did I get the most? Basically I went back to this hotel and, was big, was binging like crazy. I was like, okay, by our cardio bridge, who, who can solve this problem? Who's that? What do you do with this? You know? And I found guy in Pittsburgh, I mean the Philadelphia, some guy does robotic surgery.

Stanford actually might know something about this. And so, googled Stanford, the people that might be, that I could talk to at Stanford. So I found a surgeon, Dr. Jack Boyd, who ended up being the guy that did my surgery,

and I emailed him. I said, I see you have some papers. Help me. You're like, what can I do? How do I do Luckily, he got back to me with him like a day or two, and he forwarded me to Dr. Snicker. Dr. S I know you talked to right at Stanford

yourself

who's the um, the team leader there? She's kinda the administrative leader of the, of the myocardial.

But first of all, they have a team, . Nobody's got a team. Like now there's a couple other teams, but they're just following Stanford's team. You know, Stanford was the first one to have a team, it's a real good team. It's a, you know, they have like topnotch surgeon, topnotch cath person, topnotch, uh, radiologists.

I'm about the 25th floor, and through the film you can see the next skyscraper over. And I'm taking pictures on my phone of the different, I have no idea what I'm even looking at. I'm just like, taking pictures, taking pictures. And I, and I send her all the pictures. next day she says, her and Donna, the nurse, she says, you should come, you should come in.

We, we see the bridge. It's definitely there. You should come in. And when Stanford tells you you should come in, it means they see something. They're not, they're not gonna be like maybe kind of sorta

Track 1: They don't mess around

rob: they don't mess around. Yeah, for

sure Yeah

I wonder if it's

Track 1: You taught

rob: literally was

going on

Yeah Later. Later. Yeah. So make long, short, I went home, I flew back to the United States. I couldn't stay in China anymore. I had to get the surgery and, It took me about a month to, to get insurance, I had to get my insurance going. It cost $700 a month in Massachusetts, uh, out of pocket, just like a private plan.

It was all just paid for. So, it is, it is what it is. and by the way, if, if anybody is stuck out there and can't get surgery and or too expensive or whatever it is, you have options. I live in Panama. There's a guy in Panama who says he'll do it right here. He, he's, he's did a heart transplant.

it's, you have to, I'm roofing surgery is usually not that difficult. . your, didn't your surgeon say it was a piece of cake? I think the one

you you went

Track 1: yeah. But you know, but also mine was. . It was easy, but it wasn't because I had multiple bridges on multiple arteries. So you know, he said, yeah, that, that it was standard and fine. But for me personally, in my heart it was a lot of cutting.

rob: Yeah. You had, how many bridges did you have? Like five or

Track 1: Three,

I

rob: O three It's like The O ones we don't usually hear about like om and there's

other ones

rob: Yeah, yeah, Those other two don't come up very often, but they do, like the other ones do come up like the rca om, and they do cause symptoms.

It's, it's because

Track 1: Yeah

And my surgeon said, you know, my OMS were, my up two marginals were bridged enough that they were probably causing problems, but it was more the L than anything, cuz mine went down to the ventricle.

rob: Oh wow. So you, so yours was one of the, well, I was about to caveat that, that when we say it's usually a pretty simple surgery, was gonna say, unless it's super deep, and in yours

it was Right, but

he it was a piece of cake, didn't he? I think, right?

Yes

Track 1: He just, but I think he's just a ninja at what he does, , so,

rob: yeah.

Right. Well, okay.

He just, he just kinda like the Willie maze of, uh, he just like makes it, everything looks easy, right? Like,

Track 1: Yeah. Yeah It is mind

It's, I don't even know how they do that, but, incredible. Yeah. so yeah, no, I, I just, uh, was basically went into a holding pattern for, you know, living with relatives for like the next, geez, it was like from about the end of April to, had surgery out before Christmas

Track 1: That's a long time to be in a holding pattern.

rob: it was a weird holding pattern.

I really wanted to get that and honestly, if I could do it again, I, I would've got, I would've done that, not because there's anything wrong, but just because that's to me, why go through a much worse recovery when you don't have to when you

technology The reason I didn't was cuz I just couldn't , I couldn't find anybody to do so I spent, I spent the next May, June, July, like the next seven months I guess. I taught in the fall at two very, very bad schools. Unfortunately , very rough schools, last minute jobs and it was brutal going into you know, I feel like I could really stand up and,

Track 1: Yeah. Describe your symptoms were by now, because like, you know, you had that one bad incident in China that got you the hospital, but like, were deteriorating over the next many weeks? that's what happened

to

Like, it was basically me getting up in the morning, feeling tired from the moment I walked out, like just totally and just like okay I'm just gonna trudge to the, to the mall and I'm gonna sit in Starbucks all day long. And that's what I was doing. I was trudging to the mall, sitting in a Starbucks like 12 hours a and then getting up

eating

Track 1: not a quality life

rob: because I, I wanted to be in the air conditioned place where I could breathe cuz the air denser when it's air conditioned and they have good conditioning in Starbucks. It's just tropical city. And because um I wanna sit down in a comfortable chair cause I'm gonna be there for 12 hours,

Track 1: Right

rob: was like, I'm not, I'm not, I I was just like, that's where I was. And I, and again, I was like, you know, same as you. I was very athletic and everything yeah. So it was. And I, and it stayed like that the whole rest of the year. You know, even when I was living in Massachusetts waiting for surgery, my relatives lived in Salem, you know, the witch Trail City.

so basically I did that and just to, just to have a job and stay afloat and get the pay for the insurance and all that. And, uh, so my, my plan was, was to try to get the robotic surgery. And so I found one guy in Philadelphia and one guy in New York City. I made three chips. I tried to cut it to, I made three chips to New York City.

I drove from Boston to New York City three times to get worst cath that's ever been delivered. by some guy who it looked like, you know, compared to Stanford's cath, which is like multimedia digital output with D F F R, they did none of that. It looked like the old Atari pong or something, you know, like the

old uh video games where there's just

Track 1: Now you're dating

rob: had just like a little green Yeah. Yeah. I'm 40, I'm so it's like, but um, it was just silly. I was like, really? I drove for this and this is what you, and then, and then the surgeon afterwards said, you don't have a my rob, like, you don't have a myocardial bridge. Okay. Like you have maybe an arm problem.

You should really see a ologist, a sports doctor, cuz you mentioned some shoulder pain. know, they said physical therapy,

Track 1: an arm problem.

rob: yeah. And that was after Stan. I, I said Stanford already diagnosed you know, he's like, no, I have Stanford. Stanford. They don't know anything cuz a lot of doctors, you know, their egos are so big, right?

Not, not all, but that they just have this kind of thing where if any other hospitals said this, they said, ah, and they just, you know, they just do their thing. So he blew it and I got nowhere and which didn't help my case with my family either, you know what I mean? Cuz they're, you know, still because they don't know how do they know what I, you know maybe I'm still making it up.

They can find a directory of surgeons there and said Philadelphia, cuz there's nobody in Boston showed So that list. So I went to this guy, I won't name his name, but he was a top US news and World Report top doctor, and so was the other guy in New York And I went there and I, I told him the same thing.

I think I, I already diagnosed with the myocardial bridge. It's on the scan. I'm holding it in my hand. Here it is. But I didn't know how to point to And he looks at it and he says, Rob, I'll be honest with you, I don't know how to read these from myocardial bridges, but I don't think that's your problem.

And let me talk to the radiologist. Talks to the radiologist. even bring my skin with them . So I was just talking to about the abstract, and long story short, comes back and gives me a call in the afternoon. He is like, it's not your problem. Thanks for driving down, but I don't think you have a myocardial bridge.

And I finally talked to this guy at six o'clock, appointment master surgeon, you know, he is, got videos of himself online he was just perplexed and baffled by the whole thing. and he sort of scratches, you know, he's, he comes back after looking at my videos. He's like, Robert, 99% of surgeons wouldn't touch this

And I'm, I'm looking back, I'm like, are you kidding me? They've been doing this surgery for 50 years and so here's this guy who's this master surgeon. So I was just like, oh, okay. I give up with this guy. So he just wouldn't do it. You can't change their mind, you know, if they're not gonna do it, they're not gonna do

it

was

Track 1: to go to Stanford?

rob: I was actually already, I, I actually had to go Stanford four times cuz the timing was so bad with scheduling there, people kept being on vacation over the summer and everything. So So, I was already two visits into Stanford. When that guy finally agreed to talk to the, the Philadelphia guy, I'd already been to Stanford twice, I think before that.

So it was just a little bit more like I had each tested a separate, like, I, one, one time I just consulted, one time I had CT and stress echo. One time I had Kath and then finally had searcher at the end. so finally had the surgery, in December, uh, three days before Christmas. And there's another good dude named Paul Giardano on our site, who's also from Virginia.

and also had the surgery like I think a day or two after I did. And yet another myth that we can bust, which is that young people can't possibly have symptoms from myocardial bridges because Paul was 20, that 21, or he was just graduating from college about that time. and this was pretty wild because Paul, Paul's story is wild.

And, uh, three or four people all, we all had surgery in the same week, I think, or before Christmas. It was like, did like 40 of it or something. It was crazy cuz Vin wanted to get the end of the year, deductible. They wanted to get the surgery before the deductible, restarted for the new year. . after the surgery, yeah, there was a lot of pain.

You probably had the same thing, you know, post-op pain, right? Your chest has to heal. Did you have the sternotomy or the thoracotomy? I can't

Track 1: I did, yeah. Mm-hmm.

rob: Yeah, they went, they went this way or they went sideways

Track 1: Yeah. No, they went up and down. Mm-hmm.

Track 1: Okay.

rob: people. Yeah, people ask that a lot. Like, which is better? I don't know which is better, but like the, the selling point for, for the sideways through the ribs was that it's a smaller incision, which it is, I think it's like maybe four inches roughly, depending on the person. Whereas a sternotomy like much longer incision.

But there's a, there is a downside which is notable, which is that, um, the sternotomy at least they're not cutting through muscle, it's more just through your bone, right? They go right through your sternum and kind separate that. Whereas the Throid, they don't go through bone, but they go through your pectoral muscle like a big chicken breast, you know?

So it's like, so that hurts, you know, like it's, it's, it still hurts a little teeny bit. Not, I wouldn't say hurts, but it's tender, whatever you wanna call it. So that's

Track 1: Oh, interesting. This many years

rob: yeah It's not

Track 1: for you,

rob: still tender for sure. Yeah. That's incision in the whole Yeah. It took a while to be able to, Lift weights and do stuff with that muscle.

It took a

Track 1: Mm-hmm.

That's what it's made for. It's made to reduce recovery time. I think people say it matter of weeks versus over a year, you know, of really

Track 1: Mm-hmm.

rob: So, so yeah. So that's kind of how I had the surgery, and. After the surgery, I came back to Massachusetts. I had fluid in my lungs. Um, a lot of people get that I, I had a bit of fluid, it was causing me problems.

Some other people have like a liter of fluid in their lungs. and that comes from the lung being deflated during surgery. They put like a, some kind of tranquilizer to get it out of the way, it deflates and then somehow,

moisture condenses on that when it's, when it's deflated. So it's a common thing.

and so they stuck, they stick a little needle in your back and then sucked the fluid out at the local hospital and did that in Massachusetts. So

Track 1: Were you

Track 1: That sounds

rob: I had, I

Track 1: a great time.

rob: yeah, it wa it wasn't a p it wasn't a party. uh, you should have seen the guy who did it too.

He looked like he was about to, you know, just like hanging out at a pool club or something, like drinking a beer, just like walking around like it's no big deal. Talk making jokes with people. And I'm like, and he sticks a needle right through my back. I was like, okay, you can do that too. All right. And then like five minutes afterwards, like five minutes afterwards and I was like, oh.

I got through it then I had what's called a vagal reaction. Your vagus nerve goes nuts and your blood pressure drops to like 30 something. And I was like, oh my God. I had no idea what was going on. So that lasted about five or 10 minutes. it was, yeah, it was crazy. But, uh, yeah, no, I, so I get out of there, but a lot of people have that fluid in the lungs post-op, and that's, that's another big point we should, I wanted to, you know, make sure we mentioned is that if you, people always ask, well, how long should I stay surgery around the hospital?

You know, like a day, a week, you know? And me, you know, like 10 days

Track 1: Well, so I had my, you know, five hours down the road from where I live. I'm in, you know, the Tetons on the border of Wyoming and Idaho, and I went down to just south of Salt Lake City at Intermountain Medical, and I think I was only in the hospital for four nights post open heart. And then they sent me on my merry way.

rob: So how, how far was that from your house? Were you

Track 1: Five hours.

rob: the

Track 1: Five

rob: you were there in the hospital and then you just went home, like straight back to your or you hang

out in hotel in the area. Okay.

Track 1: Nope, They just said nope, you can go on back home. And, you know, I was really thankful I was able to do that. Because, you know, I had gone out to Stanford for all the testing and then they canceled my surgery due to Covid and that was so deflating and it was, and I was so symptomatic.

What's

that

rob: wow. remember that. Yeah. But I, I remember you symptomatic I forgot about the covid part. Wow,

Track 1: Yeah. So I, they had been doing unroof surgeries all fall and then they canceled. I was like the start of where they put it all on hold again. but, you know, I was gonna have to wait to do the dobutamine testing, which you have to do for myocardial bridging. I was gonna have to wait. The next time they had an opening was in April.

rob: Hmm. Wow. Wow. That's, that's, that's wild. It got that bad quick Like it just dropped

Track 1: Oh yeah. I went from. We're, you know, like elite athlete to not being able to wash my own dishes in my kitchen within a matter of days. And the way I understand it is, you know, when, like you've got a garden hose and you just let you know your, you let the water throw, uh, flow through. But if you run over the garden hose enough with your car or bend it enough to stop the flow of water, that garden hose loses its pliability, and then the water doesn't pass through the way it used to.

rob: Yeah

But it was, I think it was really the myocardial bridging cause I was having more and more breathlessness. But it was the one day that I had, you know, had heart attack while mountain biking and that's when the arteries gave out and they never really quite recovered. And then within a matter of a couple of months, they were really, they, it was like very little bit, very little water was getting through those garden hoses

rob: Damn

Track 1: so it took

rob: You actually had a heart attack

Track 1: them.

Mm-hmm.

rob: You actually had a heart attack while mountain biking.

Track 1: Yeah.

rob: Oh, wow. And how

Track 1: And I survived and I finished the mountain

rob: That's the

Track 1: Well, cause I, I, I'd already gotten to the top and I was gonna finish my ride and I wasn't believing because why would a 42 year old woman who's in the top best shape of her life have a heart attack?

rob: right right exactly

rob: That, that, that's another, you just brought up a whole bunch of points there. Like, one being that, know, that's, that's a funny thing too. Like if you have other things going on with your health, you know, then it makes it more like, we see this all the time in the site, right? People go, well, I got this and this.

I don't know if it's actually the myocardial bridge that's causing the symptoms. Cause they also have this other thing over here, or this, or this And a lot of times, yeah, it's, you do have that and that, but it's this, it's also this too, you know. And, and also doctors don't always connect the dots. You know, they'll say, Hmm, you have a myocardial bridge and you also have these vasso spasms.

I don't know where they're coming from It's they're bridge , they're caused by

Track 1: The bridge. Silly.

rob: Yeah. Like what they're coming from? Yeah. Cause like you said, it's a hose and then like you squa. Every heartbeat for your whole life. And then the endothelium, the, the lining of it basically doesn't respond.

Track 1: Mm-hmm. .

rob: did

Track 1: I couldn't cook. I couldn't stand a shower. It was exhausting just to put clothes on. I too was a teacher at the time and after. Three weeks of school at, when school started. Again, I was so exhausting, exhausted, walking from the silly parking lot to my building. And I remember the very last day that I worked at the school, I walked in and two of my coworkers looked at me and I was like, I cannot do this anymore.

And they're like, you look like you're about to die. Like, I was white. I couldn't breathe. My chest was killing me, you know? And, and by then I had already been in contact with Snicker and she was working to get me in. I was just waiting for the phone call from them to schedule me. But I, I, I went to administrative, the administration, and I said, I, I can't do this anymore.

I, I have to resign. So I had to quit my job, and then I just sat waited for surgery. Like you

I get, believe me, I get that. And the, that's the other thing too, like you just said, it's, it's the little things, right? It's not you, you could probably do some exercise, but then all of a sudden you just walk from here to here and it's somehow that's really exhausting. Just the small

Track 1: Yeah. And don't ask me to carry anything in the process. . You know, it's, I mean, and when we did go to California, my husband was like wheeling me through the airport in a wheelchair. I mean, it was just like the thought of getting from one concourse to the next and then for them to cancel the surgery and I had to fly back home after the heart cath.

I was,

rob: Yeah

Track 1: found hell, I found hell.

rob: hmm

Right? Yeah.

Track 1: let's see, me, I, so they canceled me mid-December and then I actually, I, I didn't tell them that I found a different surgeon and had surgery, and so they called me in March me they would schedule me for April. And I was so relieved that I didn't wait because I don't think I, I know I wouldn't have survived, and I just thought to myself there was no way I could, I, I would've either died from, you know, my heart fully giving out from lack of oxygen, or I would've just gone crazy and died from being crazy like it's something else to have to sit there and wait for what is considered an elective surgery.

But it certainly does not feel elective, like I think of elective surgery as like a nose jo, like, you know, plastic surgery or like that.

rob: Yeah. Yeah.

Track 1: This was not elective in my point of view.

yeah, that's not an elective surgery if you're trying to not have that happen, you know, it's like . It's like serious surgery. Yeah. And that's

the thing

Track 1: my poor husband, sorry. Go ahead.

rob: I was gonna say, doc, we just have to keep spreading. I think we've done a lot to spread awareness about it really in the last four years, but still there's.

Static. They have to, like, a lot of, uh, doctors just, never really learned about the correct information in medical school. And so,

you

have to, you have to kind of it's always a friction when, when the patient knows more than the doctor about a topic, you know, you're a teacher too, right? So like, I'm a teacher, you're a teacher.

That's cool. I, I'm not, you know, no big deal. But I don't think doctors get that the sort of, grounding very often, you know, where, where, where the we're. And so they may be a little more sensitive to it or something like that. So it's, it's real hard for a patient to go in and have a doctor be wrong, then the patient.

Kind of knows they're right cuz they've done the research. It's all out there. I mean, we have the Wikipedia page, the Facebook site, everything, and the doctor just won't budge. Like we, we have many cases, if you've probably seen them, right, where they said, I gave the doctor the video, the site, the myths, the this, and the doctor just literally refused to read anything.

gave him studies, gave him papers, didn't, wouldn't read You know, so it's yeah, it's like, uh, if they're not gonna listen, you can't convince that, convince someone, you know, so,

Track 1: No

And yeah, that's, the ego does not serve the patient one bit.

rob: Hmm

rob: hmm.

Track 1: he would wake up every night and make sure I was still breathing. Like that was our reality.

And there was many nights where I would quite like, I would go to bed and think to myself, cuz I didn't want to alarm him, but I was feeling so bad, my heart was hurting so much and I was just so, I had all the symptoms and I would think to myself, I hope I get to wake up tomorrow.

rob: Wow.

Track 1: And that just has, you know, I don't go to bed thinking of it that every night still.

But I just, I, you know, people's complaints. Now, I'm, I would, I think to myself, I'd give any, you know, I'm so thankful that I can have a complaint. I'm thankful that I can participate in life because it just felt like I was so on the cusp every day of losing my life. And I, I don't know if you felt that way.

rob: I have. And uh, and I like, if I feel tired, I'm like, I don't know, should I go for a jog or not? I'm okay. There was time not that long ago when I was sitting in Starbucks for 15 hours a day, you know, just sitting I couldn't do and I couldn't do anything. I was just like, know, so like, maybe I should get to go for that.

You know, like, just be glad you can go for a jog, you know? So

and, and I, and just to be clear, I, I exercise a lot. I go to the gym and, and run and stuff. There's still some

Track 1: Yeah. So tell us about your recovery. So you had your surgery and hung around Stanford recovered, but then you had to have the fluid taken outta your lungs in Massachusetts and,

So, so after the operation, I picked up a part-time job, teaching, uh, IB geography at the International School of Boston. got real lucky, somebody quit. And luckily it was part-time, it was exactly what I needed, just part-time. It's just something I knew in my wheelhouse. I've taught geography for a long time.

and so, 17 days after surgery, went back into the classroom, and I didn't feel like going back into the class . It was,

and it

Track 1: wow, you are better than me,

rob: No Well I I,

Track 1: later.

rob: I I, I, don't wanna in any way make it sound like this was a piece of cake or something like that. It was literally like sleep all day, you know, like just sleep like a hibernating bear all day long.

and so I'm commuting in and out of Boston, like an hour each way do this class at these classes and. , I would go up like one, I was exhausted. I would go up the first month or so, I would go up one flight of stairs, one flight of stairs, and my heart rate went through the roof. Like, I would go up like 10 actual stairs and then I would stop

and be like oh Jesus Christ, you know, and just like, wait for it to come back down again.

That went on for like the first month or so, and I remember thinking like, is this gonna stop at some point? You know, like this whole thing with their heart, you And eventually it sort of petered out, like in the second month. so that was a wacky, you know, it, it was a wacky, but it was a good, nice kids.

or you know, so. yeah, so, and then, and then, yeah, then I got the job in Panama over the summer off of LinkedIn. And then I came down here, um, eight months after surgery. But, yeah, still couldn't lift weights even after arriving in Panama eight months, nine months later. I still couldn't, couldn't do this.

I could do other stuff, but I couldn't do the chest, you know? So, so now I can, now I can do all that stuff, but it's, it's, it's a slow That's a slow re I mean, that's why I tell, you know, robotic is, is a, it's amazing technology. They make these little keyholes instead of slicing you open, they make little keyholes and go in that way with these micro tools and it's just much less invasive.

So I'm that, that's what I wanted to do in the first place. I never got a chance, but I think it was literally like about a couple of months after I got my surgery the first guy our site popped in, Hey, by the way, that I had surgery at University of Chicago with Dr. Bulky and I had robotic surgery.

And he's in, um, George, he just moved to Georgia Heart Institute and he does robotic surgery. So, you know, that to me sounds like a pretty darn good option. , I wish that was there when I was there. So, so

Track 1: Right. And now we have a the Southeast who does, people don't have to fly away across the country.

Track 1: And this is the Facebook Myo Support Cardio Bridge support group that you're speaking of?

I was the guy who had knew nothing people like Perry Lare, and

woman named Tracy Crosier, not pronouncing her name right. were really helpful to me when I got on. cuz they had both just did it themselves at Stanford, they both had surgery at Stanford and they were so awesome in terms of helping me In fact, when I first got on the Facebook site, Perry was literally, I dunno if you're familiar with Perry. Perry. Perry answers a lot of questions. Sometimes he had just posting pictures of himself getting out of. and with, with Dr. Snicker right here, you know, him and Dr. Snicker together with the heart pillow and everything.

and he was, his story is like, had a massive myocardial bridge. and he went in difficult symptoms and all that. He had a bypass, he had the wrong operation. He had a bypass done five years prior and didn't work. Cuz that's the problem with bypass. It can fail and it failed And in his, I guess he would've been his late now he was in his forties, his late thirties at the time, so he had to have a second open heart surgery.

That's what happens a lot. Like these docs do like a thousand bypasses a day or something, you know, they're so used to doing bypass cause it's such a typical operation that they just wanna kind of go back to their default op and just do the thing they know. But that's not the, that's not the, the primary, um, first line treatment from our cardio bridges because you still end up having a bridge.

Track 1: No

And like what is their version of all the time?

rob: yeah. Right. And big thing is, this is a big misconception.

I should probably make a video about this one too, but so doctors would often tell people, well, I've done hundreds of these, you know, and it's not necessarily totally true, but what they mean is that they've done incidental on roofings while they were doing something else. So there was a patient had like plaque or something, whatever else, it was another heart issue.

went in there in the course of the operation when they, when they opened the person up, they said, oh look, this is myocardial bridge. Um, and then they'd unroof it on the spot. And just an incidental finding within the larger. And what makes that different is that the big issue for most people not doing the surgery, right?

which Stanford has like a team to do that, you know.

and some places I won't have any names, but some places we, that we do a lot of surgeries now they're not, they have a team and the team's not working real well, . so, don't, you know, there's like confusion in the team. They don't know whether to tell the person yes or no. So, yeah, that surgeon may have done incidental on roofings, but you gotta get, that's like the guy in New York.

He probably could have done the UN roofing, but they were too inept with the testing. to get me to the green light stage, even though Stanford had already diagnosed it. So, so that's the big thing is getting the green light, you yeah, so I went through the next year I guess, recovering and, um, people, you know, I guess people ask like, how much better are you, Stanford's Stanford says they did like a six month post, a six month post-op.

Track 1: Mm

rob: got. In my case, I would say I felt, know, 50% better almost, you know, within the next month or so. It bar aside from the pain obviously I was having from the surgery itself, but in terms of the heart stuff, I would say, you

know

I could, I could just, my heart is getting more oxygen now, you know, so it's 50% better.

And then real slowly over the next couple years, I'd say that. All, like the lot of the endothelial dysfunction started to heal itself slowly, and now I feel like 75% better or something like that, you know, 80 or something like that. So much more than, it was, much better than it was before. We should probably talk about that, that the endothelial dysfunction. the myth of, so this is, this is one of the big myths that, that unroof surgery doesn't work. If you still have symptoms like right after your operation, like within the next six months or a year or something like that, like many holes in there.

And it damages the lining of the garden hose to where, and if, especially if you're older, this is a bigger deal. It's gotta heal, right? If you're younger, it can heal quicker. Can you have less? It's called endothelial dysfunction cuz as the endothelium is the lining of the artery and then it stops working correctly, it stops putting out the nitric oxide and it stops responding to the nitric oxide, which tells it to open up when you need it to open up and get more blood through.

attack

Track 1: incredibly uncomfortable. Yeah.

rob: can only imagine. Yeah. Yeah. that's a myth that somehow, because you still have that, that means the surgery didn't work because that's not what the surgery is supposed to fix.

It's supposed to fix the myocardial bridge. The other stuff that endothelial dysfunction is, is a question of your artery literally has to remake itself or the inside of the hose has to regrow. That takes like years to do that if you're, if you're older. But, but it does get better usually. Uh, but it just takes years It's not gonna probably ever get to perfect or, or brand new, but take 75% over zero anytime, you know? So,

Track 1: Same.

yeah.

rob: Yeah, Yeah for sure. Have you, no. Have you noticed that improvement too, that kind of.

And I chose to

rob: is after? Yeah. Okay.

Track 1: after this, after my heart surgery. And I can still remember, I, I immediately said to my husband, Jason and the surgeon, I can tell you've saved my life. It was that dramatic of a difference, and I'm, yeah, and I'm so glad. My husband is quite the photographer and captures all our moments really well, and I felt like I walked really fast from I C U to P C U and

I, I did not walk very fast, but in my mind I was very fast because I felt that much better

rob: Yeah

And so, you know, my recovery has been profoundly bumpy. And I also have continued to have like peripheral life stress. You know, my mom, I don't know if you remember, but my mom died, you know, nine weeks post-op, open heart surgery. And that really did not help my recovery. The stress of that was really intense.

And then, you know, I, I kind of, well, my body rejected the sternal wires, so I had to have my sternal wires

rob: I remember that. I remember that. Yeah. Yeah.

And I really have been in a masterclass of learning to listen to my heart and not overdo it. And I had to really let go of going back to my old life. Like I thought I could go back to being a ski instructor and mountain biking the way at the level that I used to, which I mean was not like a competitive level.

But I really enjoyed being out a lot. And I, my heart just has not given me the green light, but I kept pushing it so it was making my symptoms worse and. My blood work around this time last year. You know, I was put in the hospital last Christmas, 20, 21. I was put in the hospital on Christmas night for elevated blood markers for heart failure, and I was really

rob: Really

Track 1: starting to show heart failure, and I tried to go back to teaching skiing.

rob: did you have I have plaque and stuff like that? Also

Track 1: no, I didn't,

rob: Somewhere

He didn't.

Track 1: I didn't, it was, it was just, I think

maybe my heart is partially extra special , I just tried to go back too soon, is what my best guess is. And you, I went to the Mayo Clinic this past summer and I did a whole new workup of everything and really took like a fresh look at my heart and the whole thing. And they were like, we would not have unroofed you.

And I was like, well, I think you're wrong there, because I felt immeasurably better after the

rob: How How, about that? How about that statement? I mean, we would not have unroofed you, I mean, really, it's like really. I mean this is the one in Rochester, right?

Track 1: Yeah. And I but they, I, I

Like they're, they're the, you know, I don't want to talk smack about hospitals on the show, but like, I don't know what's going on up there because they keep turning people away. Uh, like they just told a person who obviously benefited from surgery, we wouldn't do surgery on you because you had a really deep myocardial bridge.

That's the, that's ultimate person you should do surgery on. What, what was their reasoning for that? I'm just curious. Like, why would they.

Track 1: I don't remember now. I think I shut them down before they could even go there. Cuz I, that is just something I know to my core that saved my life.

And I'm able to do that now just at a much slower pace.

rob: Mm-hmm.

Track 1: So, I don't know. I think my point of view is it, it's just so much bigger than the unroof and. there's so much opportunity to really zoom out to 50,000 feet and look at your life from 50,000 feet, and it's such a lesson in like, you know, we've been given this second chance.

I, I consider this my bonus life. I'm on bonus time,

rob: that's, yeah, exactly. Yeah. Yeah. Mm-hmm.

And I, I just know that my heart is telling me to knock it off. I've given my heart an avatar, , and, uh, and it is its own little personality

and

rob: are you?

Track 1: Yeah, exactly. And I, I just know when it's telling me to knock it off.

rob: yeah.

Track 1: So that's how that's how I describe how I'm doing.

rob: Well I didn't know that, that you had that Mayo visit and all that stuff Yeah One little side note on what you were saying about the test, cause you had no plaque and everything I've discovered, I mean, there's, there's other stuff that, that can, you know, uh, stiffen your arteries and things like that, that doesn't come up on a lot of these tests.

it's one of the main markers of arteries, but it doesn't, it doesn't, it's not calcium score, it's not the usual cholesterol plaque.

It's, it's just a separate thing. Lipoprotein a

Track 1: do measure that and how do you know?

rob: there is something, there's some kind of newer test that does, but usually they don't, it's not commonly done for everybody, but they, you can do you can test for it. like lp parentheses a lipoprotein a there's something else, called, well there's, there's, uh, fibrin.

There's just fibrin. It's just stuff, it's like the same type of steps that makes like blood clots and scabs and things like that on the inside of your arteries when they get, um, abrasion your body, puts that stuff on there. And normally it takes it out too with these enzymes that eat it up, um, like protein eating enzymes.

So it's, I've been taking that for years actually. think I've had a really big problem with that before. I think my eyes are messed up, but I took so much of that stuff. I think it eat a lot of that stuff right up. So Sarah Peptos, it's, it's a big time, you know, high p, high potency enzyme that eats, uh, eats up fiber.

Uh, but that's not just for myocardial bridge patient, that's for anybody in general, but, yeah. But, um, so there's other things, you know, besides just the usual cholesterol and calcium plaque that can stiffen arteries and things like that. I also do, right now I'm doing this, I just literally just started this two weeks ago.

Uh, I forget if, if I messaged you about it, the E E

Track 1: Mm-hmm.

Yeah. I was hoping you would share with our audience what you're up to, to continue to help you heal.

It's a very holistic kind of like, solution. It's not, it's not invasive. They don't have to go into your body or anything. And you spend an hour each session, 35 sessions, 35 hours, basically you get up on a table and those inflatable kind of cuffs that you get for your blood pressure, you know, they inflates.

it's kinda like that, except they put those on your legs, like your, your calves and your thighs, not your feet, hook up, you know, the nodes to your chest says his nose, when your heart's beating, and basically you just lie there and then every time your heart beats, it sends a signal to make these cups have like a high pressure inflation.

And the, the general idea is that that causes that blood to like, uh, in the total amount of volume and your upper body to increase. Increase. So all these arteries up here, which don't normally he was explaining it like they don't normally get expanded because, um, they keep emptying out into the heart.

But now they. So it stimulates their growth. Yeah, so it's, it stimulates like natural oxide production stimulates the endothelium to, to grow. And it also, this is the crazy part. It's if these are the arteries as they started, it's, it stimulates the growth of New Ex, like new branches, like new extension arteries off of those which have to be, healthy.

Cuz they, they're not, there, haven't been around before. They're brand new. So it's pretty well, but, um, yeah, so I've done it for, for, for nine times so far. And

Track 1: why you doing this?

which means the smaller vessels, you know, so I forget that was severe or moderate, but it was definitely there. But like I said, so that, that's why I'm taking it. And I, I still have issues with, you know, just general, know, part of it too is this, this is sometimes gets forgotten.

I think this point is that. So, I wish I had my pictures, my, that old Chinese film here. But, uh, so basically you're artery, the, the, the one that people, focus on most with myocardial bridges is your L a d, right? Your left interior descending artery. And so that's, that's the one that's, that feeds the ventricle of your heart, which is where the blood comes out from, through your whole body.

So that's a real important artery. So mine, like if you look at the scan, it was stuck inside of the, the latter half of it basically was stuck inside of a muscle, heart muscle for my whole life. if you look at it, it comes down like a nice tube, like, like a regular tube. And the bottom half down here before surgery.

thick

And the doc, the doctor in, uh, Philadelphia, the guy, he wouldn't do it. You said he wouldn't, nobody would touch this. He comes back from the, from the video and he is like, he's a kind of a no nonsense, you know, guy.

He's like, you have the artery of a small old woman. And I'm like, well, thank you.

Track 1: gosh

rob: But know that

He's like, I was an old woman's, like, you know, small old woman. Oh, small woman. but like the first part's great, the top of it. Then the second half is really, really skinny.

So I don't know if it's any bigger now, now that it's not in the heart muscle anymore. I hope so. But just small, you know? So you need more auxiliary, apparently they they call

um

what's the word? Not corollary, like helper arteries. You can grow new other arteries to branch out

to like assist with

that.

Yeah. Something like that. Yeah.

Track 1: Mm-hmm

good

Track 1: So how many more, how many total treatments do they recommend for the E E C P?

rob: The typical number is 35, and I've only done nine. So for nine each, each one's an hour. So, I pay here in Panama, it's the guy I'm doing it with is the guy who brought it to Panama, like a decade ago. First one to do it. So it's like a hundred dollars a session. times 35, 30 $500, which is a lot, but it's at the same time it's like nothing compared to a hard operation.

So,

Track 1: yeah. And it's your health?

rob: Yeah.

Track 1: Yeah. Wow.

rob: a deal. Yeah. Mm-hmm.

And the only reason why I knew about it was because my surgeon, or sorry, not my surgeon, my first cardiologist I saw told me he was gonna go looking for it because he was suspecting that's what it was. And then he found

rob: Good for him. Good Wow. Geez.

Track 1: well, and then I read my own report and found it, and then he still told me that I just had anxiety

rob: Oh bad for him

Track 1: me off

rob: Okay.

Track 1: and I.

rob: got one

thing, right?

here in 2023.

Right.

rob: Mm-hmm

Track 1: it's mind blowing to me that Facebook was what helped me advocate for the help that I eventually got, that saved my life.

rob: Mm-hmm.

Yeah,

Track 1: And so you are now.

rob: me too. Yeah. Yeah.

So tell me a little bit about that. Tell me about your role and what you see and what you are a witness to. Because I don't, I don't go to it that much right now cause I'm frankly kind of tired of my story and I just am trying to go forward. But when I have the bandwidth, I do, I do log in and try to add my 2 cents if I think it's needed. But tell me, tell me about what you do [01:11:00] now to maintain that site.

rob: Yeah. it's been a unexpected, Thing, I guess it's, you know, okay, so here's me the guy on the steps of the Chinese hospital alone on a sea of marble with, I have no idea what the heck's going on. And that was like four years ago. And now I'm the guy that people ask questions to on the Facebook site.

So yeah, basically part of it is that, I got to the site having no idea what I was doing. And, uh, was like asking Perry Lagree was asking uh, Tracy Crosier, anybody. And you know, by the way, we should give a massive shout out to, uh, to Donna, Donna, me, Miranda, who was the nurse at Stanford,

Track 1: Oh, she's amazing.

rob: she's like, uh, 10 time All Star.

If she hadn't said that. It would've been months before, if, you know, it just would've been a slower process. And because I got on it early, the the ball started, you know, the, the ball started rolling early. But yeah, kind of what happened, I guess was that I was on it, this is like 44, you know, four and a half years ago.

I got stupid information, I knew it. I came back and asked people, is this right? I know it's not right. Right. It's like, no, that's not right. That's making any sense. I went to Stanford four times when I was at Stanford. I came, I'm also a journalist too, so I came in with a kind of an educator, teacher, journalist mindset asking, [01:13:00] her with questions.

She's probably like, get this guy outta here. He is asking me too many questions. so I asked all these people questions, and asked questions on Facebook and, and looked stuff up. And it got to be a point where I started answering other people's questions. You know, just naturally they had the same questions I did.

You know what I mean? Like, just, just had a convenience. So I started with like a couple of pages, now I'm 50 pages long, you know, so , it makes a, makes life a lot easier. You just say, read that, you know?

Track 1: Do have a table of contents? I haven't

rob: there, there there's a table of contents. Yeah. Yeah. We should probably get somebody to make it clickable or something, but yeah.

All over the world. All over the us, all over the world. So that's, that's a big, you know,

Track 1: but 20 is not very many.

rob: It should be 300, right? Like, but yeah, exactly. And and there's probably another 300 out there we just don't know about that. Have done some unroof at some point, you know, but nobody bothers

to

so that just kept spiraling.

like, like March, February, I mean, uh, March or April of, of 2020. Yet another person got on the site, you know, I think and, and said, my doctor denied me surgery. He says, it doesn't myocardial, just don't cause symptoms. And I'm like, oh my gosh, this is ridiculous. Like, what is going on out [01:15:00] there? And then some, somebody posted a video, puts , somebody posted a video a guy.

I don't, I'm not trying you know, put anybody on blast year. But it was a guy from England, a doctor in England who of one of these guys that you know is your friendly cardiologist type of a guy, you know, just trying make him some videos of different conditions, his expertise. he made a video about MyCard Bridges.

I'm watching this thing, I'm like, on the most important points, like the fact that Bridges why Bridges caused symptoms he was dead wrong. like he had, but not only wrong, but he was completely backwards. And I had been talking about this myth for the last like year on the slide. I was like, it's a myth.

It's a myth, it's a myth. And I said, oh my God. I wonder where he is getting this from? Where, where could he, like, why is a doctor making this? He's making he going out of his way to make a video about a myth. Like why? So I said, I wonder where it could be. So I googled like, where could it be coming from?

A lot of doctors get information from Dr. Dr. Google and Dr. Wikipedia. And they were tell, they were basically looking at Wikipedia and then denying patient surgery based on what Wikipedia said that right? And I, it this organic light bulb went off. I'm like, yeah, it's frightening, right? So right there in the next couple of weeks, I just, I gotta write, I was just covid, you know, so you're just hanging around.

So I just rewrote the whole thing. I just erased the entire Wikipedia page, started from scratch and I rewrote the entire thing. and then I sent it to Stanford. Cause I, I know Dr. Snicker and, and Donna and I said, I said, look, I rewrote this whole thing, but I wanna make sure it's right. Can you take a look?

at least in some parts, that was, that was the, I I think that was big because now, now we can refer patients. Like, we can say, look at the F FAQ or look at that. And we don't have to be like, but, but don't ignore that part. You know, just don't look at that part. Just, you know, we can say, yeah, look at that and it makes sense, you know, so, yeah.

Track 1: Well, I just thank you for your service. I mean, it's such an act of service

rob: Mm-hmm

You just sat there with me in the muck and listened and cared for me and checked on me, and you listened. You didn't try to make it better. You just said, I'm here, and I remember you did that for me. And that's what the, the support group does on Facebook. It's like, here's this container that you can find all the information you need, you can reach out to other people.

rob: we, we have to just, uh, m mb research info is the, is the handle mb research info. It's just just post studies and updates from our site and just

stuff like that Yeah just like information.

Track 1: Great.

rob: yeah. But I know I know, it's yeah I um, that's another way of, just because I post studies on the Facebook part.

I'm like, well, why is only this group get to see it? We'll just put it out for their whole world, you know? So, but no, I mean, it's like I said um I know exactly what you mean, the validation. It was me. Like, you know what I mean? That was me on the site four years before that. So I was just, I was on the other end

so how could I forget that?

you know, social media is a powerful thing, you know, so it's like, it is not that many people, they get a chance to like, help somebody in Pakistan, you know, like with a life changing, you know what I mean?

It's, it's a good, yeah, I know, you know, you're a teacher too right So you know what that's like, but so that's a, it's a cool thing for, for me

Track 1: Well, and that's the point of this podcast. It's another way, and it's not just for Myocardial Bridge, it's for anyone who needs any kind of open heart surgery. But you don't have to do this alone. And I hope that those that listen to you, our episode today, you know, that are going through the Myocardial Bridge journey, take it from two people who fought tooth and nail to make it through the medical system.

But we did it. And look at, we look at us. Now you're thriving in Panama. I'm feeling good enough to, I'm writing a book and doing this podcast like there is life after a really tough journey. And it actually can be really beautiful and maybe even better than before.

feel too

Track 1: Bonus

rob: yeah And, and, and it's also the like, It never ceases to amaze me like that. I went through 40 amount of years, forty four, forty five years.

my birthday's April 30th, so I was diagnosed like before that. But, um, without knowing this, you know what I mean? Like this, this almost like something that now, cuz now I, I spend so much time on the, on the Facebook side and it's like that surgery was such a big deal of my life and I just walked through that 40 whatever years this serious heart issue without knowing it.

So I, I'm, that's connected to your point. Like, if you're somebody out there, like, it just, it just kind of a lesson, right? For life. Like, there's people out there with, with myocardial bridges and all kinds of other stuff out there who it's just having a hard damn time. Do you know what I mean? And it's like, cut 'em a break, you know?

And I, and I probably might the I wasn't the best at that growing up, you know, I wasn't the best at cutting people a break

but it'd give me

Track 1: Oh, I wasn't

to the future

Track 1: we're beauty pageant level. pageant level when you're through open heart surgery. yeah

rob: yeah. And I'm all like, bumbled up and it's like wintertime, it's December and I'm walking around like, kind of like waddling around the parking lot. My chest is, I'm on six different painkillers, you know, so I probably look like a garbage and I walk into, a Chinese restaurant. In Mountain View. And Mountain View is like one of these like, tech, you know, Silicon Valley type of places with a lot of money and everything.

I was like, I kept walking and I thought maybe he got the wrong person. Is somebody behind me or something? like, yo, I'm just like, what? You know? he threw me outta the restaurant I couldn't even, it took me a while to figure out what the hell he was even going on. Right. Yeah. I realized he thought I was a homeless person, like, Stumbling off the street cuz I probably looked like an office person, and I was like, oh, damn, okay. But that, that, but my point is that that is one time for me. Do you know what I'm saying? it's it's a it's a point it's a but this, it's every day for some people. Do you know what I mean? Because, like a point that, that struck me a like a while ago, that like, a lot of times the people who need help the most are the people who are grumpy.

Like the people we that need help the most. The people who don't get who we pass over, we wanna help somebody who's successful. Do you know what I'm saying? So, It just struck me cuz then it, that was me getting it on the other end of it. So it was like, okay, you know, so, but there's all kind of people out there who just get skipped over, passed over, you know?

nah, you don't have a problem. No, it's this. Notice that, and, yeah, so it just kinda opens your eyes, makes you a little bit more mature, you know, uh, go through stuff like that. And, this is kind of a heart surgery and everything and makes you appreciate who go through stuff like that as

well

Track 1: and I say that I have a much more open-hearted life. I find that I'm so much quicker to love and quicker to forgive, and quicker to meet people where they're whereas before my heart was literally caged.

passed on in family, running families. That's the, their words. It's hard, it's impossible almost to prove that.

Cuz you'd have to have like generations of dead people and get their hearts and see, right? But, but they, they've had multiple, uh, there there's been multiple parents and kids who both had myocardial bridges at the same surgery at Stanford, for example. I can, and, and I've seriously almost convinced that certain people in my family, you know, had it so, or have it.

Um, and maybe in your family as well, we will never know. Maybe in a lot of cases, but, so yeah, so like a lot, it's like a lot of people we might have grown up with, some of the people on the site may have members of their, their parents or their uncles and aunts or brothers and sisters might also have a myocardial bridge.

That's a good, I like that, that metaphor.

Track 1: Mm-hmm. Well, I've really appreciated your time today.

rob: Well, thank you for having me on

just a great idea to have this podcast and, uh, honestly, you know, like of all the people on the site, you had a really bad case with Myocardio Bridge. You had a heart attack a, on a ski slope, was it? Or a, a mountain bike.

Track 1: mountain biking.

rob: Jesus

And, and, uh, so it's like, One of the things I noticed from your case, like when, when you got on, I remember when you got on the site, that you kept persevering through it and you kept asking questions and from pre pressing forward and stuff. And it's like such a, it's such a lighthouse, you know? It's such like a, a, a light that people can follow, you know what I mean?

It's I I, it helps inspire me, honestly. So I really appreciate you doing that and and having this podcast

Track 1: It didn't occur to me to give up

rob: Yeah.

Track 1: It

didn't cross my mind, so

rob: Oh yeah

Track 1: I don't give in very easily. Almost to a fault, like I said, but

rob: good.

Track 1: oh well. Thank you so much.

Boots Knighton: And that's the show for today. Thank you for spending part of your day with me. The heart chamber exists because of you. If you find value in this podcast, consider donating to this cause. Go to the heart chamber podcast.com and go to the donate link. And hey, while you're there, feel free to leave me a voicemail.