Episode 27: Jed Baker’s “Bridge to Nowhere” Journey Went Right Where it Belonged.

SPEAKER_01 0:00

I call the cardiologist's office and I say to one of his partners who's, you know, because he's not there, hey, I got this myocardial bridge. Could that be causing this issue? And he says, it's a bridge to nowhere. Don't even bother. Don't even worry about it.

SPEAKER_00 0:30

Welcome to Imperfect Hearts, 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. In some circles, today's guest needs no introduction. He's the director of Social Skills Training Project, an organization serving individuals with autism and social communication problems. He's on the professional advisory board of many autism organizations, and in addition, he writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors. He's an award-winning author of six books and has been featured on ABC World News Tonight, Nightline, Fox News, The CBS Early Show, and the Discovery Health Channel. He has his doctorate in clinical psychology, and he's also quite the musician. Be sure to listen to the entire episode because we've got a surprise for you at the end. You'll recognize his name as he's a frequent contributor to the Myocardial Bridge Facebook Support Group. Dr. Jed Baker, I couldn't be more honored and privileged to have you on the program today. Jed, welcome to the program.

SPEAKER_01 2:20

Jeff, I I was saying to you before the program, like it's like talking to a celebrity because I've listened to your voice so many times, that comforting voice of yours, and you're like a beacon of hope in pretty dark times for some of us, you know, who've been going through this. And so it it's been just a wonderful opportunity that you have me here and I get to see you and hear you in person.

SPEAKER_00 2:42

I I'm humbled by that coming from somebody of your pedigree and pedigree.

SPEAKER_01 2:47

Pedigree. That and my like easy pass gets me through the tolls on the New Jersey Turnpike. So there's no pedigree.

SPEAKER_00 2:53

I'm talking to an author and a clinical psychologist who has anybody complimenting me on my voice as a clinical psychologist makes me feel like, you know, wow, you talk to people all day long to calm them down and get them on the right track. So so thank you for that. We're gonna have an interesting conversation because you actually have gone through your process concurrent with a couple of other people that we had, and that would be Kaylin Kellart and Leanne Ayner, all in the same 24-hour period. So you're the like the triumvirate of of surgery here.

SPEAKER_01 3:28

They're my surgery sisters, and I've I'm watch out for everything they say. I've been feeling like I've been in it together with them from the get-go.

SPEAKER_00 3:37

Well, you know, in a bit of irony, you know, the the three of you going through the process at the same time is really unique. I mean, there's just not that many surgeries being done in the course of you know a week, much less to have three of you at, you know, two at one place and a third on the other side of the country when we're all trying to find the proper surgeon and the proper diagnosis. So you're 59 years old, obviously had this all your life, as we know it's a it's a a birth defect, but it wasn't until relatively recently that you started to experience symptoms. Walk us through when that occurred and what the symptoms were that you were experiencing.

SPEAKER_01 4:22

Sure. Well, I think my story, you know, symptom-wise, begins like four three, four years ago, two, five years ago now, 2019. The fall of 2019, and this is just before COVID, right, hit. It was not the pandemic hadn't hit yet. I had some kind of wacky virus, and I never really have a fever, but I had a fever the fall of 2019, September, and it just lasted a day. I kind of recovered, and all was well. And then one day I wake up in the middle of the night gasping for air, couldn't breathe well, and I felt really dizzy, and I turned to my wife, and then my daughter was in the house. I'm like, uh, something's not right. And so they took me to the emergency room, and I was still, you know, just trying to catch my breath there, and gave me some oxygen and such. And I guess they did some sort of routine, you know, test. They do your labs to see if you've had a heart attack, which, you know, fortunately I didn't. They do the EKG, which, you know, by the time I got there was sort of normal again. And so that that was my first ER visit where like mystery, nobody knows what happened. Like, you seem fine, you know, spend the night, we'll observe you. Next morning, leave, go home. Okay. So, and then I'm at my office maybe some weeks later, seeing a client, and you know, and the experience I've had for whatever reason. So, everybody's a little different, but I I would get bloated and I couldn't breathe. So, I figured, well, this is gastro. But then I got to the point where I'm feeling dizzy again, I can't breathe, drove myself to the ER, which which is a little kind of not fun when you're dizzy. And but I get there, my wife meets me there, another round of testing, maybe they did an echo, I'm not sure what they did. But the 30R visit back in 2019, they did a CT scan, which should be able to identify a bridge. But as I've learned through this process, only if people are looking for it. And so I get a CT and they say to me, Well, you know, Jed, there's Mr. Baker, you know, there's good news and there's bad news. The good news is, you know, calcium score is zero. But you know, there's some soft plaque blockage, maybe up to 40% in your right coronary artery. And we don't think that could cause your symptoms, but it's enough to put you on a statin. So I started a statin. And by the way, when they finally found my bridge, it was in the LAD, not there was nothing in the RCA. Like it was clear. And it was, you know, statins work, by the way, because four years later, or as I've also learned, CT scans are quite unreliable because it might have been that there really was no soft plaque pocket. At any rate, I go on a statin, they send me back home again, and I see my gastro guy, I see a lung person. Like, why can't I breathe? Right? So this is a little different than I hear from my compadres on the myocardial bridge site. Most people seem to have engined.

SPEAKER_00 7:27

It seems like you didn't have any of that basospasm or endothelial dysfunction. It was more shortness of breath and and discomfort.

SPEAKER_01 7:34

Well, shortness of breath is a scary thing, you know, when you don't know that you're going to be able to breathe. And, you know, and I have to say, in retrospect, as a kid growing up, I never felt like I had any symptoms. But I always remember my, and I'm a great swimmer, I love swimming, but I always had dreams of drowning and not being able to breathe. And I think that's probably at some level I was having a little bit of this occasionally without knowing it. You know, anyway, I go to my gastro guy back in 2019. He says, look, maybe you have small intestinal bacterial overgrowth, although they didn't do a test for it. Try this antibiotic. I'd take the antibiotic, and you know, we're we're now like into the pandemic has hit. It's January, we're not doing nobody's doing anything. We're all hunkered down at home. And for whatever reason, like my symptoms abated. I just wasn't feeling anything. And over the course of four years, on occasion, I would get out of breath. I do a lot of speaking engagements for my living, and I was doing a talk once, I remember, and it was a six-hour talk. So halfway in, and it's always after eating for me, right? I ate lunch and I go and do this talk. And I remember like I'm really having trouble breathing. But I told, and they could all hear it while I was talking. And I said to everybody, like, don't worry, I'm not having a heart attack. I've been in the air three times, we know it's nothing. To the contrary, right? Right. And and then I got in a plane to go home, and I'm like having trouble breathing the whole time on the airplane, and I'm bloated too, so I'm still thinking it's gastro, which by the way, I'm sure I have some gastro issues. And I might have borderline asthma too, potentially. But as a the gastro guy in all his office, people would say you shouldn't cause that much shortness of breath. You know. So over the course of four years, it was manageable. I didn't really, other than like a couple of times doing talks and other things, I would feel that the exercise was fine. In fact, I felt better with exercise. And then we kind of hit January 2023. I get COVID, and I'm certainly tired after COVID. And then that summer comes around, and you know, I'm feeling really tired all the time. And I'm looking at my Apple Watch, and it says, You're aerobically, you're not fit anymore. And we're like, really? And I would try to push it a little bit and do more exercise. And I just kept telling my wife, I'm so tired. And I went to the doctor, my primary care, all these tests, everything, you know, lab tests. You're negative, nothing. Nothing's going on. We don't see anything.

SPEAKER_00 10:07

For the benefit of those who are wondering what this tired is, for those of us experiencing it, it's it's not tired. It's not like, oh, I'm a little drowsy, maybe if I just took a nap. It's complete exhaustion. It's I'm done. I I don't know why. I s it's fatigue, it's it's it's an experience that is not your normal, I didn't sleep well last night.

SPEAKER_01 10:29

And there, I mean, I thought it was old age, right? I said, well, okay, I've reached a certain age, and the doctor says, Well, this is more fatigue than old age, but they couldn't find anything.

SPEAKER_02 10:39

Right.

SPEAKER_01 10:40

September I get my fifth COVID booster, which, you know, I handled the other ones fine, but maybe the day after I started to get some palpitations. Now, in retrospect, I put that together in my head, but I may have had little palpitations here and there that I just ignored. But they were certainly bigger. And my wife urges me, I'm like ignoring it, you know, and my wife says, You should get it checked out. You really should. So I go see the doctor and they put me on a halter monitor and they s and they see these proximal aphibs. So, right, that means like it comes and goes. Not, but I some of them were an hour and a half long of AFibs.

SPEAKER_00 11:20

That's a long episode, yeah.

SPEAKER_01 11:22

Yeah. And then they decide, well, let's get you another Echo. Echo looks great. So they said, well, we should just do a stress test to be sure.

SPEAKER_02 11:31

You know.

SPEAKER_01 11:32

And meanwhile, I think they they're suggesting you have to do it now, but you should try a beta blocker if the you know AFib continues. Because it was really, and I was the type of guy who was getting it only at rest, only after eating, not after exercise. Although during this period, for the first time in my life, I started to have some symptoms after exercise. I hadn't had it before. But I decided to take a hike up a up a you know pretty tall hill by that by my house, and I got to the top, and I'm like, I'm I'm dizzy. I don't feel well, and I'm not sure if I can get home, but I I managed to make it home. But there was like, that's I've not felt that way before. So he says, get the stress test, a nuclear stress test. So the stress test comes back, and the first part they get back is just the EKG part. It looks great, you're not even having any rhythms, looking good. And I'm like, great. So I go to the gastro guy because I'm still I'm now I'm having some of that bloating and out of breath again here and there. And the gastro guy, you know, says, Well, again, it could be SIBO, small intestinal bacterial overgrowth. We'll start you on the antibiotic again. And I'm in his office, literally talking about this, and I get a call from the cardiology office. Oh, the nuclear part of the stress test came back. You have ischemia. There's a and I said, Oh, well, is it so like lack of oxygen to your heart, right? And I said, Well, is it where you found four years ago that right coronary artery? Not at all. It's you know, anterior, mid-anterior area. Well, that's exactly where the LAD is. So I'm ischemic right where the LAD is. I think you're gonna need to get a catheterization. Sure. Okay, great. So I'm scheduled to get the calf in maybe, I don't know, a week or two. Talking, oh, did I fail to mention in all of this? I think I did. I had already been to the AR twice for shortness of breath.

SPEAKER_00 13:26

Oh, in the sequence of time that we've crossed. Okay.

SPEAKER_01 13:29

Yeah, yeah. Back in now in the fall of 2023, I I started to get that sort of shortness of breath again. So that sounds like at least once.

SPEAKER_00 13:38

They weren't finding anything, nothing erratic, no MI.

SPEAKER_01 13:41

I had gone to the ER once, I guess, so far. And then when the cath was scheduled, I was gonna go back and get that, but I was talking to a client on Zoom, not active. Although, you know, sometimes when you're talking to clients, it's emotional and you can get irritated. And I start to get dizzy and out of breath again, and I it won't go away. And so I said, We got to go to the ER. Well, my wife says, You've got to go to the ER. I'm saying, like, well, wait, wait, wait, but she's not, you know, let's not mess around. So we go to the ER and they say, Well, you were scheduled for a cath a week from now, let's do it tomorrow. So they do the calf November 10th of 2023. And the guy says after the, you have the heart of a teenager. You're great, you're great. You know, incidentally, you have a myocardial bridge in the LAD, mid-lad area, you know, but it's nothing.

SPEAKER_00 14:36

You know, you're incidentally, incidentally.

SPEAKER_01 14:39

Yeah, right. And by the way, I'm kind of an obsessive guy, as so many of our myocardial bridge compadres are. And within about 20 minutes after that diagnosis, I'm thinking, well, how do I get more information about this? And I recalled when my son had a rare issue himself. We found a Facebook site where we found the best surgeons in the country who really know about this. I said, I bet there maybe there's something like that for myocardial bridge. So I look it up, bam, I'm in the myocardial bridge support group. I find out about Stamford. I see that, okay, it's possible one day I might have to have open heart surgery for this. And I call the cardiology office. I'm still at the hospital, mind you, and I say to one of his partners who's, you know, because he's not there, hey, I got this myocardial bridge. Could that be causing this issue? And he says, it's a bridge to nowhere. It's nothing. It's don't even bother, don't even worry about it. However, to his credit, my cardiologist comes in about five minutes later and says, you know, it's kind of a remarkable finding. I said, Well, what do you mean? And he said, I've seen the video. Your artery is getting really constricted. It's getting crushed quite a bit.

SPEAKER_00 16:01

So he's actually seeing this on the CT or from the angiogram or from the angiogram, from the cartocusation, okay.

SPEAKER_01 16:09

He's seen, you know, the dye go through the arteries and he's seen it can contract and really squeeze. So he's like saying it could be something. I said, Well, I've been on this site and it says, you know, it's possible one day I would need surgery for this. And he looks at me and says, Don't let anybody cut you open. Right. We're going to start with medication. If it doesn't work, we can stent it. So I get on the myocardial right. You know about that. I you know how dangerous that is because it'll just crush the stent, and now you So I get on the myocardial website, Facebook site, and I say, Here's what my cardiologist said. And thankfully, all of you guys don't you got the flood right. Yeah, and one person who also chimed in was Dr. Kofidas. He chimes in. I don't usually chime in, but this is not a good idea. Don't stint it. And if you want to talk, I'm happy to talk. So I get discharged from the hospital, and first thing I do is I listen to your podcast with Dr. Kofidas and learned so much, right, about what's going on. And he's nice enough to have a free Zoom session with me.

SPEAKER_00 17:21

Yeah, he's very good about that. He's he's just within a couple days. Yeah.

SPEAKER_01 17:25

It was no small effort to try to get that calf video from the hospital. I I had to really go through hoops just to get a copy of that. Dr. Covey just said, look, take a picture, take a video of it on your phone from your computer screen and send it to me. And he says, Yeah, it's pretty clear. But he says, here's what you got. You you gotta rule out the gastro stuff again, you gotta rule out the lung things again. And you you can try medication for three to six months as the protocol, beta blockers and other things. And do that first, you know, but but you clearly have a bridge, you know, it's probably significant. By the way, the calf that I had was not a provocative calf. There were no IFFR, DFFR, there were no measurements, no, no, no debutamine. And later I asked some folks why, and they said, Well, we didn't think you had a bridge, so we weren't prepared to do all that.

SPEAKER_00 18:20

Right.

SPEAKER_01 18:21

So, but what I have at this point is ischemia right where the bridge is, in the same area. So I'm not getting oxygen to the heart there. I'm having major SOB, you know, shortness of breast symptoms, and I'm having an obvious milking effect. It's clear, right? So I also then find out about Stanford's second opinion program. This within days, like I send start sending stuff, and it just takes forever to get the information to them.

SPEAKER_00 18:50

Right.

SPEAKER_01 18:51

I I was fortunate to get Dr. Schnitter herself to review it. And so while I'm waiting for that, I go on the myocardial support page again and find out there's one surgeon in New Jersey who has done at least one unroofing for one person in the myocardial bridge site. So I I go and see him, and he's lovelier than can be. You know, he's just he's wonderful, spends like, I think, two hours, an hour and a half with me, you know, going over the symptoms. Uh it's not the hospital I wanted to go to, but he's just he's wonderful. And he says, Look, I don't think you should be waiting very long for this. You're significant having significant symptoms, you're ischemic, there's this milking effect. Maybe this needs to get done. So not that hard to find a surgeon, it turns out, in my dense neck of the woods here. And then I have a ER friend who lives in New York City, and he's he knew some heart surgeons. He'd asked around. He said, Well, there's this another guy, Dr. Paul Burns, at Valley Hospital, which is where I ended up going. Meet with him. And he was the nicest guy in the world. And, you know, like the other guy, I asked both of them, how many of these surgeries have you done? The first guy said, well, you know, maybe one a year. And he'd been he'd been doing this for maybe 10 or 15 years. And then Paul, Dr. Paul Burns, I asked him the same question. He said, Well, uh, he's been doing open heart surgery for 34 years. And he said, I would say that I have had maybe 10 exclusively unroofing surgeries in my lifetime. However, when I'm doing these bypass surgeries, which he does 400 to 500 a year, very often there's an artery trapped under muscle, and he has to unroof it as part of the bypass surgery. He's doing it all the time.

SPEAKER_00 20:47

And the the good news is just as an aside, we've heard many of the surgeons we've spoken with have the same statement. Well, we've been doing this all along, we just don't consider it an unroofing procedure because they're not symptomatic from what we assume is the bridge. They're symptomatic because the artery is compromised in some way, shape, or form. The irony in all that is, according to everybody we've spoken with, 100% of the time where the artery enters the heart, there is compromise. It's either occluded or it's narrowed as a result of Right.

SPEAKER_01 21:22

And as I've come to understand, as a 59-year-old man, you know, if you stomp on the garden hose for 59 years, it may not spring back during diastole again. Correct. And I'm hoping it springs back now. I feel pretty good. But you know. So I I see Dr. Burns and I I think he's great. He here's what really clinched it for me. I went to see another doctor too, head of cardiac surgery at another hospital who was has done maybe more, 20. And by the way, for the our listeners, I bet this happens in every state. It certainly happens in New Jersey. The morbidity statistics are Calculated for surgeons who do bypass surgery, at least here in the state of New Jersey. So I could look up the record of how many of the patients survive for each surgeon at each hospital, by hospital and by surgeon. And you know, we're talking about 90-year-old people coming in having a heart attack that they often have to operate on. That's included in those stats. So they all had really, pretty, really quite good, good stats. But what clinched it is while I'm doing these surgery, you know, consults, and I get Dr. Schnittner's report back, and she said, very careful. She said, Look, you you definitely have a bridge. It is probably significant. You're ischemic, there's a milking, obvious milking effect, and you're having the shortness of breath. It is possible that that symptom is replaced for the angina in some people. But our gold standard is that you should have a provocative calf to be sure that that bridge is causing flow problems, you know, blood flow problems. So I'm thinking I call my you know one of the surgeons who will do it. Nobody wants to do it here in New Jersey. Nobody does. But Dr. Paul Burns said, I will do it for you. I'll schedule it. He got the report. He got the report, and he not only got the report, but he he called me as soon as he got it. The other guy, who's great, has a zero mortality, he couldn't be bothered to look at the Stanford report. I wanted nothing to do with it. I I've done hundreds more surgeries than I'm sure Stanford has ever done. And you know what? I'm sure he's great, and he would have been a competent surgeon, great surgeon, but I needed somebody I also felt I could like and trust to some extent when they're going to open up my chest. Dr. Paul Burns was that guy because during this period where I'm waiting for the calf again, the maybe the provocative calf, I become so out of breath again. I got my third trip to the ER. And I call Dr. Burns, his office, you know. He calls me on a cell phone. On a cell phone that night. He says, Look, stay there. You did the right thing to go there. Don't have to come to our hospital. Stay at the hospital you're at. We'll work this out in the morning. We'll get you the calf if you like, we'll get you surgery. But he says about that provocative calf, he says, Look, I will do that provocative calf. We can get a schedule. But you're ischemic, you have obvious milking effect, it's really getting compressed, and you're having major symptoms. If you don't meet the cutoff criteria by Stanford University's protocol, what do we do then? Do we say we're not going to do surgery for you? Do we leave you be? And I guess I failed to mention my trials of beta blockers made my shortness of breath worse. Infinitely worse. Right. And I felt like I was going to faint because my blood pressure is always generally low anyway. So I felt like I was going to pass out on them. And if you have borderline asthma, beta blockers are a bronchial constrictor and can cause more asthmatic-like symptoms. So the fact that I now had his cell phone and he's calling me and he's and he's willing to do whatever I want. I said, you know what, Dr. Burns, I am not up for another procedure. If you think it's inevitable that I'm going to need this unroofing, I'm going to just schedule it. And I passed on the provocative calf, which I feel mixed about because maybe it would have shown if I had spasms or I had some endothelial dysfunction. But I was tired and I couldn't breathe anymore, and I wanted to get unroofed.

SPEAKER_00 25:38

Well, and not to mention there's a level of anxiety with do this sooner than later. Later, like maybe if I wait too long, it may be too late. Am I going to have a heart attack? And am I going to have severe consequences, stroke, whatever it may be? Right. But it tends to move you along a little quicker.

SPEAKER_01 25:54

I knew how to prevent probably having a heart attack. I could sit in a bubble and never move. And that was working. That was working quite well.

SPEAKER_00 26:04

At some point in time, though, we do we do know it will catch up to you because they don't get better to your point of the compression over 59 years, 65 years, others 70, it becomes less responsive and rebounds slower, and you still have something happening in terms of its narrowing at the point of entry. So yes, it you would debilitate yourself.

SPEAKER_01 26:28

Well, I I was going to the ER every couple of weeks, and I was I had stopped so familiar. I wasn't doing talks, I wasn't seeing clients, I wasn't playing music anymore, I wasn't doing anything. And I was, frankly, I was agoraphobic. I was afraid to go out of my house and go to the supermarket because I tried that a couple times and got really out of breath and didn't feel good and not so comfortable driving home. And so I didn't want to have another episode somewhere. So I just I stayed literally sitting on my couch. That's not a life. And so, you know, the decision to get surgery was pretty clear.

SPEAKER_00 27:08

And it's not a way to earn a living either. You can't work, you can't do what you do.

SPEAKER_01 27:13

Well, yeah, that's true. That's true. And and speaking of that, I was hoping originally to go to Stanford because, you know, they're doing all the research. And my insurance, as a self-employed individual in New Jersey, as of January 1st, 2024, New Jersey got rid of every single option for self-employed people to be insured by a doctor out of state. So I thought, well, how much would it cost to go to Stanford? I was ready to do that if I needed to. Also, Stanford said we have an eight-month waiting list. The folks on the support site, you know, said, well, that eight-month waiting list is actually 11 months. And I was like, I'm my life is over right now. I'm not doing anything. I don't know that I can wait. So the next issue was, okay, I'm going to get surgery, but they also recommended what's called left atrial appendage closure and pulmonary ablation, pulmonary vein ablation. Because I've had some arrhythmias that were going on prior, you know, when this all began this fall, they the ablation might help with the getting rid of the apib. And then most, if you have apib, if it recurs, most blood clots that you can get with aphib will emanate from the left atrial appendage, or this little pouch off the left atrium. And if you close it up or you cut it off, and you end up getting aphib again after surgery, you're just unlikely to need to be on blood thinners, and you're unlikely to get a blood clot.

SPEAKER_00 28:52

Okay. So this is the Stanford recommendation?

SPEAKER_01 28:55

No, that this was from my surgeons here in New Jersey. Okay. And I went to four people. They all said the same thing.

SPEAKER_00 29:02

Got it.

SPEAKER_01 29:02

We're going to unroof you, pulmonary ablasion, and we will clip that atrial appendage.

SPEAKER_00 29:08

Okay.

SPEAKER_01 29:09

Now they they clip it differently. So one person would surgically staple, you know, cut it and staple it. Another person, the doctor I went to, uses something called an atri clip, which is basically a bobby pin, which is in my heart. Yeah, I got a bobby pin in there.

SPEAKER_00 29:25

There's excess material that you didn't start with. Right.

SPEAKER_01 29:28

I agonized over that decision more than the unroofing because my symptoms were all based, as far as I could tell, from the bridge. You got to unroof me. And maybe the rhythm issues could have been from the bridge, but they could have been independent of that. So the ablation made some sense too. But now you want to take a perfectly good part of my heart that didn't seem like it was having any trouble and either cut it off, clip up, get the blood supply off so that it atrophies. And I was reading about it. That was a real agony for me. And I have to say, Dr. Burns was incredibly patient with me because I must have asked him 20 different times. Well, look at and I sent him journal articles. Well, look at this article. Look at that article. What about that? Like, is it going to remodel my heart? And there was some evidence if you're a kid, that pouch is a larger proportion of your heart than when you're an adult. There was some issue if you already had heart failure, maybe getting rid of that. It's considered to be an unloading chamber when you're pumping blood. So if there's a little overflow of blood, you know, can go in that pouch.

SPEAKER_00 30:33

The last thing a surgeon or cardiologist wants is another doctor who who knows how to research and dig and find what he needs to find to ask the questions. It's like, I've got you. Don't worry, I've got you.

SPEAKER_01 30:44

Well, he he's wonderful. He would smile and he would respond to those questions. One of the other doctors who, again, was he's very competent, he was really tired of my questions. He said, I think you're overthinking this. Like, well, I'm electing to have somebody saw me open, you know, retract my ribs, cut into my heart, put a bobby pin on this pouch and kill off a part of my heart, and then like put radio heat waves to scar like my around my pulmonary veins that you know that emanate from my heart. So to me, I'm not overthinking this. Like it seems like a big decision.

SPEAKER_00 31:25

And at this point, you're actually sharing enough information to save some other people all the homework because they can just say, I heard from another gentleman who had the unroofing procedure who had these same symptoms and the same process that you want to do on me. Give me some more information and you'll save them a lot of a lot of extra work. So I loved it. I love the description of it.

SPEAKER_01 31:49

All four surgeons in New Jersey and Dr. Schnitker said, if they're recommending the LAA closure, go ahead and do it. And so I finally said, okay, let's. And I can't tell you the relief I had just making the decision.

SPEAKER_00 32:02

Right.

SPEAKER_01 32:03

Because it's not like a broken bone. You've got to set it. There's a little bit of, and you know, my then the surgeon said, Am I absolutely 100% convinced that you won't have shortness of breath again after the surgery? I can't say that for sure, but I think there's a 90-something percent chance it's going to reduce quite a bit.

SPEAKER_00 32:26

Right.

SPEAKER_01 32:27

Given that you're ischemic, given that we see the milking effect. It's so hard to make the decision.

SPEAKER_00 32:33

Right.

SPEAKER_01 32:33

For for many people. That was yeah. That was the worst part of it.

SPEAKER_00 32:38

January 22nd, you have your surgery, and you now are close to three months out. Sternomy. Tell us how everything is. And I want to respect our time. We're we've got maybe 15, 20 minutes, just to where you are and well, I'm not perfect. And that's that's what I want you to share.

SPEAKER_01 33:01

So I'm nine weeks right now, and I'm and I didn't have much pain before surgery. I'd say surgery itself was not painful at all. The surgeon has the big work to do. I just get to lie there with some pretty good drugs. You know, after the surgery, and sharing this with my surgery sisters, Kayleen and uh Leanne, I was one day ahead of them actually. Okay. And so I I could tell them, when you get these chest tubes out, man, is that gonna be a relief? Because that first day was pretty tough. I was having a lot of trouble breathing. Chest tubes were in the way.

SPEAKER_00 33:40

They're sticking up against your lungs, then every time you take a deep breath, you're like getting stabbed in the center of your chest.

SPEAKER_01 33:46

Yeah. And when those came out, man, I was relieved. But at night I would have trouble breathing, lying down. And so I had to sleep pretty much upright. And when I five days in the hospital, went home, continued to need to sleep upright, otherwise I would feel like my lungs were drowning. You know, like there was a weight on them. But I would say by the fourth week, I felt a lot more functional. And I they I took the walking seriously. They told me, you know, you have to walk every day. And I was walking about three miles a day, and I still do that, not all at once. Although I can you know, I can walk a couple miles, two miles all at once pretty well. Well, I feel like I could do more now. Spirometer, you're working with your spirometer and taking your oh majorly, majorly early on for those first, you know, three, four weeks. And I can't since shortness of my breath is my biggest symptom. That was key.

SPEAKER_00 34:40

And I can't stress enough the significance of that, not only for the prevention of pneumonia or fluid buildup, but also for the development of your lungs, because they do collapse your lungs depending on your situation and and how you went into the surgery. But from a sternal were you on a rested heart, Jed?

SPEAKER_01 34:58

Yeah, yeah. They stabbed my heart. I was on the bypass machine.

SPEAKER_00 35:02

Okay. So really critical that you're working with a spirometer as as difficult it is and as much a pain in the butt it is. Yeah.

SPEAKER_01 35:10

But you know what I'll tell you is the walking and really breathing heavy walking is a really equally equally good to clear, clear, you know, whatever sort of mucus might be there and things like that.

SPEAKER_00 35:22

Yep, totally agree.

SPEAKER_01 35:23

But I will tell you this as much as I've been doing better and my exercise tolerance keeps going up. Oh, I had one glitch about two weeks into it. I just woke up one morning and my I had tachycardia, my heart was racing. It wasn't an arrhythmia. It was just it was stuck at around 125, 130, just sitting doing nothing. And so I went to the ER at the instruction of the surgeon, got checked out, heart rate came down, they discharged me, didn't get uh admitted. And since then it hasn't happened. But I was on a rhythm medication for the first month of surgery because you know your heart is irritable and angry and it and it does weird things in that first month. And that was the only weird sort of heart rhythm, it wasn't a rhythm issue, it was a was just h high rate. Haven't had that since. But I'll tell you, last week I did my first webinar again, other than what I'm doing with you today. But it was a three-hour talk.

SPEAKER_00 36:25

Oh, wow, that's a long conversation.

SPEAKER_01 36:28

It's it's a long time, and and I started playing music again, too, and doing all that, but the talking is the hardest thing for me. And somewhere in there, I got out of breath and I kept thinking in my head, dude, do I need to cancel this? Now I couldn't have even attempted that pre-surgery. I couldn't have even done like 10 minutes of the talk. It was really getting hard. But it was three hours. And, you know, but it it it went away. It went away.

SPEAKER_00 36:54

And so I got I would say also over time, not overnight, you're nine weeks, nine weeks, nine weeks in a lifetime of healing, it's pretty remarkable.

SPEAKER_01 37:06

Well, my surgeon and said something really important to me, Dr. Burns, you know, which rang in my ear when I would tell him, you know, I still have a little shortness of breath, especially after eating, but it's not as bad, it goes away. He said, you know, I don't think you're gonna wake up one morning and like you're just better. And I know that's the experience of some people on the myocardial Facebook site. He said, it's gonna be slow and gradual. And he's been right. Every day and every week I get better. You know, I'm doing cardiac rehab, I'm exercising, I feel really strong. I'm playing playing the drums again, exercising a lot. So I I'm I'm feeling pretty good right now, Jeff, honestly.

SPEAKER_00 37:50

I'm I'm gonna ask you to change hats for a second from the physical part of all of this. Because you are a clinical psychologist, you have a little bit more familiarity with people, anxiety, trauma, which this certainly is. How did you address that mental part of it? How did you work yourself through it knowing what you know?

SPEAKER_01 38:13

Let me say start by saying, not well. Okay. I mean, you know, and my wife can tell you what a pain I must have been, you know, more so than the baseline pain that I usually am to her.

SPEAKER_00 38:27

Yeah. But yeah, the normal Jed. Now it's the Jed with an issue.

SPEAKER_01 38:31

I was certainly like, I was obsessing about every decision and every possible cause, and I couldn't talk about anything else in some ways that easily. And I also remember saying, I went to see a concert, and I was in the balcony, so I had to walk up these steps. I couldn't catch my breath. And I remember there was a psychologist friend of mine sitting by me, and I said, you know, I I don't want to live if this is the way. I don't, I don't want to live. And and he's someone who had some chronic illness too, and he said something that rang true to me, which is you, you know, that's an important thing to say, to to say out loud as a statement. Because, you know, this is an incredibly challenging period when you can't, I couldn't breathe. I didn't, and I couldn't do anything without feeling like I'm gonna choke and not be able to breathe here.

SPEAKER_02 39:24

Right.

SPEAKER_01 39:24

And just sort of someone validating that, you know, like it's okay to feel like that. It's not okay to get stuck there. You have to have hope. And it's something I preach in the work that I do, and I I preach that because of a couple things. First of all, there's all this research with like the kids that I work with with autism. One of my colleagues, Mark Duran, had did this, done this sort of research to see what predicts aggressive behavior with kids with autism. And the best predictor was parental hope, parental optimism.

SPEAKER_00 39:55

That when parents have hope that prevents that aggressive behavior?

SPEAKER_01 39:59

Over time, they get better outcomes when they're hopeful. And it wasn't how aggressive the kid was when they were three that predicted how aggressive they'd be at six. Like a wild kid isn't gonna have to continue to be a wild kid. It's parental optimism was the single best predictor, which is that parents were relentless in trying to find help for their kids. So I know that. I also know the classic learned helplessness, which is what we all experience when we're having this bridge and nobody knows how to help us, and cardiologists are saying, it's fine. You're just anxious, you're just anxious. And you get this sort of learned helplessness. So the classic learned helpless experiment is you put a rat, this is terrible, but in a jar in a water, and and they tread water for like, I don't know, maybe an hour and then they sink. But if somebody comes to rescue the rat within the first hour and you put them back in the glass, which is just awful, they tread water for two days, two days. We're treading water when we're stuck with something that nobody understands and we don't know how to fix it. And we need people like you, and we need the myocardial support group to take us out of the glass of water for a second, give us a little more hope. And that gave me enough hope, you know, to figure out there's got to be a solution to this. And I'm so much better as a result. And so that's certainly what I would say to anybody going through this.

SPEAKER_00 41:32

Well, and Jed, it's it's it's not only it's not me, I'm just the conduit. It's it's you, it's all of you, it's everybody that participates in the program that gives us the opportunity to share for the benefit of the others who are where we were, and we know what that's like. We know that sensation, we know that feeling, we know that mental state. And I think the more we can share, the more we can tell because every story is so unique, every situation is so unique, every bridge is so unique. No two are the same. And the more stories people hear, the more one is going to be closer to that particular individual's story to where they can say, that that's that's me, that's my symptom. I think I've got this. He's really helping me by sharing that because now I know I'm not the unicorn sitting here in this group. I say we we all obviously it's us. So when it becomes us, it's our it's our world. That's all there is, is us. And you get very myopic in terms of the situation. And to hear even somebody who's just close to what your situation is, it's like, thank God there is. Okay, that's similar.

SPEAKER_01 42:42

But let me say this too, because you know, part of the agony of making the decision is, you know, on that support group, you get people who've been really successfully unroofed and are feeling great. But you also more likely to get the people who are still having trouble.

SPEAKER_00 42:56

Yes.

SPEAKER_01 42:57

Because those of us who get better, we stop looking at the Facebook group after a while, perhaps. And that's hard to hear, too. But I want to say something about that because some of the people I've grown to sort of commiserate with and love and feel uh a brotherhood and a sisterhood with, they sometimes have complications after the unroofing that happens. And and sometimes they don't totally go away. But they need to have hope too, right? I mean, the thing that I practice in my in my clinical practice, you know, you have to be a salesperson of hope. And I my my refrain is all problems can be solved or greatly improved if you can wait, that's the hardest part, and talk to the right person. You knock on every door. So there are people who have pericarditis and it returns frequently, you know, for some people. Unfortunately, I have not had any of that.

SPEAKER_02 43:51

Right.

SPEAKER_01 43:52

But I know there's a solution for that too, and there are new medications coming out. You have to knock on every door. And when the Person, as my cardiologist's office literally said to me, Well, we don't know much about myocardial bridges. You should continue to research that on the internet and find the people that are.

SPEAKER_00 44:10

And by the way, thank you very much for doing all the work for me because and I don't mean me, I mean literally for the cardiologist andor the surgeon who is dismissive.

SPEAKER_01 44:19

Well, that's right. They said, you know, you seem really anxious, and we don't know anything about myocardial bridges.

SPEAKER_00 44:25

The though that comment, every time I hear it, you seem anxious. I'm thinking I'm going to die, and you're wondering why I'm anxious. You know, it's it's so frustrating.

SPEAKER_01 44:35

I was kidding with you before I I felt like I was Elaine Bennis on on the Seinfeld show where I was blacklisted from like the cardiology office. Like, okay, here comes the anxious guy. You know, whatever he says, he's just anxious. It's not real.

SPEAKER_00 44:48

That happened to Lewis Merlin. The hospital said no more. You're done. You keep coming in here with these issues. You have nothing wrong with you. Yeah.

SPEAKER_01 44:55

Right. Exactly.

SPEAKER_00 44:58

You are passionate about something that you you touched on a little bit as we were talking, that you're finally able to get back into what share a little bit of your your release. Obviously, you have a stressful position, you're a psychologist, but you have an outlet as well.

SPEAKER_01 45:13

Yeah, I I mean music is a is a place where I can lose myself. So I'm a drummer. Originally a jazz drummer, but I also, you know, got to be in this soul sort of funk rock band, Tower Power stuff, James Brown, things like that. And we got to play in great dive bars. Unfortunately, when all this went on and they had lots of gigs to do, I kind of lost that position. But I'm I'm probably in the rotation again, you know, when when they're drummer, you know, we're all of a certain age, so they get rotator cuff issues and uh whatever else. But I'm back to doing the jazz, and I got to play just before I saw you today.

SPEAKER_00 45:51

And I'm I'm wondering, your surgeon's cool with this. He says, Okay, sternotomy, he's still in sternal precaution, yet you're moving around on the drums and Well, I'll tell you, at the sixth week mark, that was the last time I saw my surgeon, in case unless I want to reach him again.

SPEAKER_01 46:06

So I I didn't really ask him. But I will tell you this I'm not I'm not lifting anything heavy. Right. These are drumsticks, they're light. I am moving, and for the most part, I'm trying to move, but I'm not totally twisting, which I can still feel. I still have a rib soreness in one area.

SPEAKER_00 46:26

You think you're only nine weeks out, Jed? It's a 12-week procedure, a 12-week process of heal. You still got another three or four weeks.

SPEAKER_01 46:34

I I'm not feeling any pain when I play, put it that way. Or even after I play.

SPEAKER_00 46:38

Wait, my my producer's asking me, hold on just a second. Now that's some drumming. That is some drumming. I am impressed. And for the benefit of those listening, we'll put a link to Jed's performance there. He he was kind enough to send me a couple of things. I love that. I just love it.

SPEAKER_01 47:04

Well, I was never gonna make a living doing that, but I was I'm happy to still get a chance that people will let me play with them.

SPEAKER_00 47:12

Well, I think it's the first time we've had somebody's passion able to be shared on the program, too. You know, as we wrap up, one of the things I'm asking everybody who has gone through the procedure, for those of us listening, for those who are in the process of making the decision, who have been diagnosed and they're stuck, sometimes stuck because they can't make a decision on whether they are going to go through a robotic process or a steronomy, they're stuck because of the fear of the procedure, or they're just generally stuck because they can't get past the next steps. Maybe it's insurance, maybe it's travel, maybe it's family. What would you say to those people?

SPEAKER_01 47:56

First of all, there's got to be some people who do okay with medication for a long time, because given the number of people who have bridges who, A, are not even symptomatic, but those of us are symptomatic. I've seen some people on the site who so you try that. But when it gets to a point as it has for many of us and for me, where I was really not living my life anymore. And then you have to sort of elect to have this surgery. They're not demanding it. You're not gonna they're not you're gonna die unless we do this tomorrow. I mean, now that's different for some people like yourself. If you're having a heart attack, you gotta do something. But it's a hard decision to make, it's it's agonizing. And who you're going to see, right? Dr. Schnitger said something that was very useful to me, like when I said I might not be able to pay to go to Stanford. She said, look for a surgeon who's done tons of bypass surgeries, because then they have they are working with those small arteries all the time. Look for someone who's done at least five unroofings, you know, where that's exclusively an unroofing. And look for a surgeon who is on board with completely unroofing you, not partially, you know. That made the decision a little bit easier about who to see, and maybe could free up some people some of your listeners who are in places where maybe like me they couldn't get to Stanford, or they were turned down from Stanford, and there are other surgeons who meet that criteria. The other thing I guess I want to say to people is the sternotomy. It didn't really hurt. I mean, because there's not a lot of nerves in your bones. The nerves are in the muscles, you know, and so there's some soreness around it. But I gotta say, other than the tubes being in me for that first day, it was not that painful. And although it's a long recovery, you know, I would liken it to anybody who has to do sort of major kneecon, reconstruction, or it takes that kind of time. So it's it's not it's not as scary, I think, as it sounds.

SPEAKER_00 50:01

And I'll add, you know, there there have been no at least none that we're aware of, and none of the surgeons that we've spoken with have incidents of death on the table. You know, some people have shorter lifespans post, but they're already dealing with comorbidities and other situations, or they didn't take care of themselves after the fact. But the surgery itself is relatively familiar. It's not a real complex surgery. It's all the diagnosis and the acceptance by the surgeon to say, yeah, this is going to be something that will work, and we see that it is causing your symptoms. That's that's the bigger issue.

SPEAKER_01 50:39

And I'll just say what I say to all of my clients and say to myself and live by. All problems can be solved or at least greatly improved if you can wait and talk to the right person.

SPEAKER_00 50:52

Right. And in this case, too, I think worth mentioning it doesn't get better over time. The sooner you can address, the sooner you can identify, the sooner you can correct the likelihood you can get back to a you know more fulfilling life, a better lifestyle, and or prevent things if you're in your 20s and 30s and they've already recognized you've got the situation, it isn't gonna get better when you're 40, 50, or 60.

SPEAKER_01 51:17

Well, I think I was lucky, a, to be on a uh statin in my first round on 2019, and then to find out this time around, I didn't really have much uh plaque blockage to speak of. And so I think getting this done now was was a good decision had I waited, right? I think then you and my arteries start to not bounce back, then you start to get more and more, you know, plaque buildup proximal to the bridge.

SPEAKER_00 51:48

Right. Jed, I can't thank you enough for sharing your story. This has been it's just been a wonderful conversation. For the benefit of those who might want to hear a little bit more, I'm gonna have a couple of links in the show notes so they can hear, and it's it'll be on the YouTube channel, your performance because there's much more there, and I really I enjoyed it personally. So I think those of us who know you from the Facebook group would be pleased to see that you're able to get back to something that you love doing. You know, for you to take the time out of your schedule today, you're helping all of us, especially those with autism. I don't want to dismiss that. That's such a significant course that you've taken to really help in so many different ways with such a significant issue in our in our world today. So I am I'm blessed to have you as a as a guest, and you know, from the bottom of my imperfect heart, thank you so much for sharing your story today.

SPEAKER_01 52:43

Well, thank you for having me, and thank you for all that you do and continue to do for all of us in sometimes these really difficult times. You are a beacon of hope, sir. So thank you.

SPEAKER_00 52:53

Thank you, Jed. 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.