Episode 25: Louis’s Odyssey Turns Into a Tale of Tenacity

SPEAKER_01 0:00

The thing that I see on the Facebook group that worries me is so many people want to go local. They want to find the local person, the local surgeon. This condition, in my mind, is serious. You want to find the best person, the best person that you can afford. I was willing to go to Greece. Not everyone's willing to go to Greece, that's fine, but this is not something that you want to take the most convenient layout. You want to find the best person you can possibly find, both for diagnosis and for surgery. Because you don't want to do this surgery twice. You want to do it once. Don't try to go cheap or go fast. It's not a convenience thing. This is get it right.

SPEAKER_00 1:30

Most importantly is to have you leave each episode with hope, knowing you're not alone, and that what you're experiencing is real. Not far from the soothing surf, sandy beaches, and lusciously green golf courses, you may be able to find my next guest walking the campus of Florida Atlantic University, or possibly cycling to or from his home in Boca Raton, Florida. It wasn't long ago, however, when none of those options were open to him. An Atlanta native, Lewis Merlin, has lived all over the country. It was when he was attending Yale University that he first met his wife, Key Wing. However, it wasn't until they met again in San Francisco that something clicked. After several career detours, Lewis finally found his calling in urban planning and is now a professor at Florida Atlantic. His three sisters are scattered across the country, and I'm sure they were challenged to keep up with him as he went through his myocario bridge dance for diagnosis over the course of several years. He enjoys hiking, yoga, and participation in his Unitarian Universalist congregation, which all came to a halt not that long ago. His story may not have been told if not for his persistence and self-advocacy to not only keep hope alive, but literally a semblance of quality of life alive. Lewis, welcome to the program. Lewis, I'm extremely excited to have you on the program today and really looking forward to the conversation. Welcome.

SPEAKER_01 3:00

Thank you so much. I I have to say, since I've been suffering from myocardial bridge, I've been listening to your program. I'm thrilled to be on here.

SPEAKER_00 3:09

Well, I appreciate that. You know, some of us get hit with our symptoms. It's like a freight train, and everything seems to come on intensely at one point. And then there's others who we've spoken with who have been experiencing symptoms for 20 plus years, and they didn't know if it was significant, if it was really a problem. And then there's there's people like yourself. You're kind of somewhere in the middle. You've been experiencing symptoms, but not significant enough. You've been in and out of the hospital, again, but not significant enough. And a diagnosis certainly wasn't appropriate for what you were really looking for. Tell me what it was you were dealing with and when it really started.

SPEAKER_01 3:52

Yeah, it really started sometime in my mid-30s. I started to get these episodes of chest pain, sometimes more than chest pain, sometimes chest pain, dizziness, sometimes headache. In fact, sometimes that sometimes a headache would be worse than chest pain. And you know, it wouldn't go away. And I didn't know what it was. And I have heart disease in the family, so I'm like, okay, I'm gonna go to the ER and get this check. And I would go to the ER, my blood test, and they'd find nothing in the blood. It's mother tests, and you know, after a while they would just say, There's nothing wrong with you, you're fine, there's no problem. And it would happen again and again. I I over about 10 or 15 years, I ended up going to ER at least 10 times, pretty much like once a year, maybe once every two years, getting tested. And it was always, they're always like, it's fine. I I actually started to think it's just anxiety. I really started to believe it's just anxiety because they never found anything. And then in 2017, I had another one of these episodes, and I guess maybe I was getting a little older, so they were thinking it's more serious, and I got my first CT scan, and they come back to me and say, There's nothing wrong with the R it's perfect. You have in fact you have a calcium score of zero, nothing, no buildup. But you have a myocardial bridge, but they're completely benign. That's exactly what it says. You have a myocardial bridge, but they're completely benign, you don't have to think about it again. We want you to see a cardiologist. So I started seeing a cardiologist, and I started taking adoptolol, but I pretty much believed exactly what they said. I believed exactly what they said.

SPEAKER_00 5:34

And there are healthcare professionals, of course we would. That's what you expect. And who knows what this thing is, this myocardial bridge. Yeah, I think everybody that's listening that's had this diagnosis is saying, yeah, they said the same thing to me. It's exactly what they said. You've got this thing, but it's a benign condition. Don't worry about it, you'll be fine.

SPEAKER_01 5:54

I guess they wish, I guess they wish they had said, you know, sometimes these myocardial bridges cause enagina. You know, not even don't even make it sound serious. Just help me know that there's a connection between the symptoms I'm feeling and my physical condition, my biological condition. Because I didn't even know that. So I thought it was all in my head.

SPEAKER_00 6:14

Yeah. And and in some cases, we also know that that's the expectation as well. This is in your head, it's anxiety, you're just stressed, you have a difficult job or a challenging job, or you name it. There's a million reasons that you can come up with anxiety.

SPEAKER_01 6:31

Yeah.

SPEAKER_00 6:32

So so what happens next? You're now in what 2017, 2018-ish?

SPEAKER_01 6:37

Yeah, so so I think what happened next is I had become accustomed to having a certain amount of pain and just being like, okay, that's just that thing. I'm just ignore it. And I was on Metropolol, and I was seeing a cardiologist every six months. And mostly I was I was fine. I was fully active, I was able to exercise, didn't really have any problem until really December of 2022, which is when I started to have every day, not just you know, once every six months, I should have pain every day. And for the first time, I started to have pain, chest pain with exertion. Up until then, you know, when I exercised, I actually felt better. But then I'm on my bike, I'm getting chest pain while on my bike, and it's getting worse as I'm biking more. And I'm like, this is definitely my heart, right? I mean, what else could that be?

SPEAKER_00 7:36

You know, I I want to step back for a second because when we first talked prior to the conversation, you were clear to say, you know, I see you have some athletes on, and and and certainly yourself, you know, a little bit different. And I'm I'm not one of those guys. I I ride to work and I ride for pleasure, but it's not like I'm going out and riding a hundred miles and all that sort of thing. And I think that's important to state too, because again, people might hear, well, you're on your bike, you know, he's he's another crazy cyclist and you know, doing you know, hundred milers and stuff like that. But yours was just more for recreation and transportation, right?

SPEAKER_01 8:17

Yeah. So I live close to work, so it's about a four-mile ride to work. So I used to bike, you know, about 20 minutes there, about 20 minutes back, just to keep in shape. I I am by no means a super athlete. I just I'm just trying to stay healthy like the rest of us.

SPEAKER_00 8:35

Yeah. How much would you say you were riding?

SPEAKER_01 8:39

Yeah, I mean, pretty much that. I mean, you know, so so it's ish. Yeah, so maybe four out of five days, I'd I'd bike, you know, round her, so round trip eight miles. So I was I remember my doctor saying, Oh, you know, that's great, you're biking to work, you're being really healthy, doing all the things you're supposed to be doing, right? But yeah, I was never, never any kind of competitive or even semi-competitive athlete.

SPEAKER_00 9:05

And in terms of the chest pain, what what was the experience? Can you help us understand a little bit more what that sensation was that you were you were getting?

SPEAKER_01 9:15

Yeah, it's interesting. For me, it's always been literally exactly over the heart. Usually what I would call a dull ache. In later phases, I'd start to have pain in other places, but for most of it, I it was it was literally right over the heart. And over time it got more and more severe and intense. I also mentioned I sometimes have some some dizziness, and I also, as the symptoms got worse, often had shortness of breath. In fact, before my daily symptoms, before the symptoms became chronic, I had several months where I was waking up early in the morning, short of breath. And I and I would and I would like go on a walk and be like, what is this? Is this in my head? Is this a medication I'm taking? It was it was scary. Shortness of breath is a very scary symptom because it's like, how do you fix it? How do you get how do you recover from not having enough oxygen? So I had again, I had absorbed every all this all the information from the doctors, and I assumed that it wasn't serious and it wasn't my heart, but looking back, it was absolutely my heart. It was absolutely my heart saying, I'm not getting enough oxygen.

SPEAKER_00 10:31

Right. And so now so now we're we're almost current, we're in 2023, and you decide something has to happen. I'm yeah at the point of desperation. This is not acceptable, and it's it's something's wrong.

SPEAKER_01 10:47

Yeah, so it's really interesting. So I I go to my cardiologist, starting to have these symptoms every day, and and gives me the gave me some new medication and gives me the exact same line. He's like, look, you're fine, there's nothing wrong with you. I I asked him specifically, can I exercise? He says, Yes. So the next week I'm on my bike biking to work, and I on the way to work, I have absolutely crushing, crushing pain. I collapse on the ground, I'm unable to get up from the ground. I have my phone down 911, and they take me to the hospital, and this is the whole same cycle again. They start doing the same tests and getting the same results. And this time, um, I I got a cat. And I had started to, I started to I found a myocardial bridge group on Facebook, and I had started to do research, and like, hey, maybe this is it. You know, we don't have another explanation, and I know I have a myocardial bridge, maybe this is it. So I started to do some research, started to think that maybe it was the myocardial bridge. And I ask, you know, my cardiologist, you know, do you think it's the myocardial bridge? And he does he does the catheterization, doesn't find any blockages, and he says, You have a myocardial bridge, but it's too minor to be causing your pain. And and I'm I'm getting worse, I'm getting worse week by week. So then I start, I seek out the uh Stanford Second Opinion program. Shortly after the cat, I start filling out the paperwork for the second opinion program. I get a second opinion online from Dr. Schnitter, and she basically says, okay, we're gonna schedule you to come in to Stanford, get a full round of testing, and schedule you for surgery, assuming that there's a good chance that we're gonna want to go ahead and operate.

SPEAKER_00 12:38

And you're in Florida, so for you to get to Stanford, that's not an easy trip in the first place.

SPEAKER_01 12:45

No, it's not an easy trip. I am lucky in that Stanford was was in a quota blue insurance or blue shield insurance. So that there's Stanford was considered in network, even though they're out of state. So it's interesting, all of that was covered, all of that work was covered by my insurance. But yeah, we made a special trip out just for the testing. I knew I was getting worse, and my cardiologist didn't really have a clue as to why. So I knew I needed to.

SPEAKER_00 13:15

You actually did go to Stanford for the provocative test.

SPEAKER_01 13:19

Yep.

SPEAKER_00 13:20

And what did you get out of that? You know, what what came from the yeah?

SPEAKER_01 13:25

So that's this is uh where one of the one of the twists in this story happens. You know, I have great admiration for the people at Stanford. So I went to Stanford, I had a C their CT scan, uh, a new picture of my heart, confirmed that I have a bridge. Then I did the stress echo again, confirmed that I had a positive result, that there's there's some abnormal abnormality when my heart is beating fast. And then I go to the calf lab and they want to do the stress, the stress test where they test for the amount of flow that's going through your bridged artery.

SPEAKER_00 14:02

Yeah, the acetylcholine and doutamine test.

SPEAKER_01 14:05

Yeah, the dobutamine test, that's right. Measuring the flow, the uh flow factor through that artery, they can't do it because I have a forked LAD artery and it's too small.

SPEAKER_00 14:18

Oh, they can't they can't get the wire in for the flow rate.

SPEAKER_01 14:22

Yeah, I can't get the wiring. So even though the cat showed I have a bridge and the stress echo showed that it was symptomatic, Dr. Schnecker said we can't operate on you because we we have not confirmed that your bridge is causing your pain. And I was I was devastated. I was devastated because by June, this was by June, my pain was getting worse and worse. And I wasn't one of these people who in February I was not ready to have surgery, but by June came around, I was ready. I was I was getting desperate. And now I'm like, okay, what am I supposed to do? What am I supposed to do? And and the diagnosis was very complicated because they said, Yeah, it's super bridge, yes, it's causing symptoms. But they said they also said you also have vasospasms, yes, and you also have microvascular disease, and therefore any one of these three things could be causing the chest pain.

SPEAKER_00 15:22

So yeah, and we know any one of those three things could be causing the chest pain, but any one of those three things could be caused by the bridge, yes, as we find in so many cases, and so I you know, I'm a double outlier, right?

SPEAKER_01 15:39

Because myocardial bridge is an outlier, but now I have a forked myocardial bridge.

unknown 15:43

Right.

SPEAKER_01 15:44

Which you know, not a lot of people have dealt with. So, you know, I spent the summer trying to see if lifestyle changes could make a difference. Maybe they can, but I wasn't able to move the needle. I was just getting worse. I I had decided by about August, September, I had decided I needed to find a surgeon. I started to look for surgeons. I wanted to push it off till December just for convenience purposes, but it just kept getting worse and it was interrupting. I wasn't able to finish a day of work. You know, I had I cancel meetings, I go home on a middle of the day, I'd have attacks of pain while talking to someone. It was, you know, it's the most disruptive. No predictability, it's the most disruptive thing. And it's really hard to talk to someone and say, hey, you know what? I'm having crushing pain right now. I can't talk with you.

SPEAKER_00 16:39

Right. And they look at you and they say, but you look fine, you can't. Yeah, right.

SPEAKER_01 16:44

You can't tell you how many people told me you look fine, you look great. And I'm like, it doesn't matter how I look.

SPEAKER_00 16:49

Right. Well, it did to the same, I think from the same perspective, we look at somebody who's having a severe migraine. We understand what a migraine is, and they're telling us, I'm I'm in excruciating pain, I can't speak with you right now, or I can't talk, or I gotta go home. We get that. But when you say it's your heart, they're like, well, no, if you have a heart problem, you're gonna you're gonna pass out, you're gonna go down, something like that. You can't be your heart. You would you stupid? Why would you be still functioning if it's hurting you like that? And for the benefit of the people who maybe are just listening to this episode, this is so common that once the symptoms start, they tend to progress and get worse in some places, in some cases, almost compounding the speed with which the pain exaggerates. So we got there.

SPEAKER_01 17:43

Just remembering that you know I had a meeting with my colleagues and we were going to lunch and we were standing outside, we wouldn't eat lunch. And I started having pain, and I said, I'm sorry, I can't stand anymore. I've got to go. And that was really when I realized I can't put this off. I can't put this off too long. I've got to do this as soon as possible. And around that same time, I can't remember if it was earlier or before or slightly later, Dr. Theo Cofidis gave a free webinar for the Facebook group, Myocardi Abridge Facebook group. And I attended that webinar and I was very impressed. And I scouted out a couple of other surgeons as well, but ended up selecting Dr. Cofidis, which of course mean meant traveling to Greece. That's that's been the most number one question that people have asked me. Why did you go to Greece?

SPEAKER_00 18:37

Well, and and take a step back just for a second. If I'm not mistaken, you actually found a couple of surgeons regionally that would be willing to have unroofed you, correct?

SPEAKER_01 18:47

Yes. Dr. Alan Stewart is in Miami and he does these surgeries. He's a very proficient surgeon. I talked with him, I talked with Dr. Guy. Dr. Guy's team also turned me down for surgery. So, you know, it's it's interesting when you have a myocardial bridge. Not only do you have to figure out the diagnosis, you have to find the surgeons who are willing to work with you. Some of them are gonna, like Stanford, are gonna say no.

SPEAKER_00 19:18

Yeah, that complication of the forked bridge. You know, in some cases, they if they don't feel 100%, they they don't want to challenge you know the situation and put you at risk either. And then there's others who will who understand it a little bit differently, are willing to go in and see what they can do. So you get a vacation to Greece.

SPEAKER_01 19:45

Yeah. So I get I scheduled surgery with Dr. Cofides at St. Luke's Hospital.

SPEAKER_00 19:53

One thing I know that Dr. Kofidis is giving people he he will do a free analysis, he'll speak with you as a consultation after you send you send him your CT scan. So did you go through that process first?

SPEAKER_01 20:08

Yes.

unknown 20:09

Dr.

SPEAKER_01 20:10

Kofitis will do a pre-consultation, that's correct. And sent him my images uh from Stanford, the 3D images which Stanford produces and so and and other files that he requested. And I think that did him enough confidence that he could handle this case.

SPEAKER_00 20:28

So we're in November now.

SPEAKER_01 20:31

Well, yeah, probably that consultation was in October, and then the surgery was scheduled for November.

SPEAKER_00 20:37

So the good news is he was not only in agreement that he felt he could make a difference for you, he was actually willing to get you in relatively quickly, because for some people, especially in the Stanford program, they may be waiting six, eight, nine months a year, depending on the situation. And here you are from consult to surgery, maybe a month, five weeks.

SPEAKER_01 21:00

Yeah, it was very fast. We went back and forth on the timing. He is a professor in Singapore, and he also practiced in Greece. And we had to work around his schedule. I was very glad to have it done so quickly, but the scheduling was essentially based on his existing travel schedule. So he said, I have a slot here. You can either do it in November in this window, or you can wait till January. And I'm like, okay, I'm gonna do November. I don't want to wait until January.

SPEAKER_00 21:34

I think we all can relate. If you get two options, one sooner than later, the sooner is the one you're gonna choose. Once we get to that tipping point of, you know, there's there's a fear you could die. We don't know. And there's no surgeon that will say, no, you won't. And yeah, so in our own best interest and self advocacy, I think everybody I've spoken with and even everybody I've seen on the Facebook group, except for this people who are so fearful of the process. They really want to do what they can as quickly as they can.

SPEAKER_01 22:03

Well, l let me say this. I I'm I wasn't super afraid of dying. I was I was I was my life had been taken away, right? I was no longer able to work, I was no longer able to go for a walk, the lowest level of exercise. I was spending multiple hours lying on the couch in pain. So you know, I I didn't necessarily think I was gonna die. I just felt like I had no life. I mean, even I remember even the even the littlest strain, even you know, bending over to do the laundry would cause a surge of pain, so much disability. I just can't, it was it was, I just couldn't bear it.

SPEAKER_00 22:49

Yeah, there was no quality of life whatsoever.

SPEAKER_01 22:51

Yeah, no quality of life.

SPEAKER_00 22:54

So you you get to Greece, you you have your surgery. Let me ask, I know Dr. Kufitis is he does minimally invasive surgery as well as what's necessary in some cases to full strenotomy. What was your situation?

SPEAKER_01 23:10

Yeah, it's interesting. I asked him if we might be better off doing a stronotomy, and he said, No, I like to do minimally invasive. Uh, he prefers minimally invasive, but then he looked at my case closely, and my artery is very small. And in fact, it goes from the left ventricle to slightly over the right ventricle. And he said, Look, in your case, there's a chance of cutting the heart and causing some bleeding, and I need to be able to get in there and fix it. So, what up if that happens? So, because of my specific physiology, he actually recommended a full strengthy.

SPEAKER_00 23:48

And how long was that process? How long were you in Greece from surgery to exit and your ability to return home?

SPEAKER_01 23:58

Yeah, so um I was in the hospital for one week and then I was in Greece for another week. They wanted to make sure that I was sufficiently stable before making that international flight or series of international flights. I will say that even after two weeks, I was quite fatigued. My wife wheelchaired me through all the airports. I probably couldn't have done it without uh heads at my caregiver at that time.

SPEAKER_00 24:31

Did you notice post-surgery any difference? How quickly was it that you realized, man, something's different? This is great or this hurts. Yeah.

SPEAKER_01 24:44

So, you know, I I I've read a lot of stories of people who a day after they or maybe a couple of days after, they immediately feel this intense relief. And my case was much more gradual. I started to feel improvement in the pain. I did start to feel some improvement in the pain right away, but it was more like a gradual, gradual improvement. And the shortness of breath actually, shortness of breath actually got worse immediately after the surgery. I the way I describe it to my friends is it's like you have a brand new heart and a brand new lungs that have never been used before, and you have to train them to work from the beginning. That's what it felt like. I was always out of breath that first two weeks, all of it. But it you know, it came back pretty, pretty quickly. And what I'm really amazed now because I was expecting because my physiology is complex, because my diagnosis is complex, I was expecting maybe I would get like a 40 or 50 percent improvement. I feel like I've got a 90, 95 percent. I can't believe how successful just every day I'm bowled over.

SPEAKER_00 25:54

Well, the good news is you you you're if you're 95, 90, 95 today, I would suspect a year from now it'll be a memory.

SPEAKER_01 26:02

Yeah.

SPEAKER_00 26:03

No, you'll you'll a case. I still feel nothing from the heart, the the the sternum. I just don't feel the sternum. That's in the two, I'm two years out, and I had I had some complications that they they had to restructure some stuff, but it's it's weird because I'm still numb in the center. I can't I can't feel anything.

SPEAKER_01 26:22

Oh, really?

SPEAKER_00 26:23

Yeah, yeah. And so every so I'll get these little you know, pinging pains. They're not hard, they're sternal.

SPEAKER_01 26:31

I was very sore in that area, or you know, have couldn't couldn't lie in certain ways, couldn't read certain ways for about eight weeks. But it feels like it's totally gone. I feel like you know, I feel like I could do anything now.

SPEAKER_00 26:45

That's great.

SPEAKER_01 26:46

Anything that the rest of my body can do, which is yeah, right.

SPEAKER_00 26:48

But keeping in mind that you have that year gap, you need to get some gradual work up to it, otherwise you're gonna be one sad, sore person.

SPEAKER_01 26:57

Yeah, I mean, I'm I'm really eager to like I mentioned, I'm really eager to start doing things.

SPEAKER_00 27:02

That's great.

SPEAKER_01 27:03

The only reason I haven't gotten on my bike yet is just the timing hasn't been right yet. Mentally I'm ready.

SPEAKER_00 27:09

Good.

SPEAKER_01 27:09

I I will say that I I love my daily walk. I mean, we live next to a park, and I just I just it's not just physical, it's it's spiritual, I guess.

SPEAKER_00 27:20

You know, have you noticed the way you used to walk versus the way you walk today is different?

SPEAKER_01 27:29

Yeah, I mean, I yeah, I mean, yes. I don't think about it as much as when I first came out of surgery, but I think you know, every time I'm like, wow, this is so great.

SPEAKER_00 27:40

Right. And you you I know it's a trite phrase, but you stop and smell the roses a little differently than just you know, it's so great to walk without pain, without worrying about pain coming.

SPEAKER_01 27:51

I mean, that was you know, I was gonna say that was the hardest thing, but no, it was all the hard, it was there wasn't one hard thing. Walking in nature, hiking, being outside, it's like what my top passion. I want to be outside as much as I can, and not being able to do that was just devastating.

SPEAKER_00 28:08

That's the great the greatest thing to hear. I mean, for me, for for Dr. Cofetis, I'm sure, and I know he's engaged with the group, you know, from a distance because he can't engage and give any advice, but I'm sure he just loves to hear these stories where the process that maybe was a little too risky or a little too concerning for others, where he's able to go in and do the procedure and it and it works. And this is just November, so you're five months out?

SPEAKER_01 28:41

Yeah, five months out, right? So I don't think I've reached my upper limit. I I'm I can walk without limit in terms of distance. I'm walking as fast as I've ever walked and having no pain and a bit of a tangent, but you know, I had I had quit caffeine entirely because that was one of the triggers. And I find that I'm actually able to drink a cup of tea now and still not have pain. So you know, life's little pleasures, you know.

SPEAKER_00 29:08

Agreed. I I did the same, and it was I I love coffee, and I was never more than a cup a day guy, and not even every day. But when you don't know what's wrong with you, we and most of us stop everything. I stopped any vitamins, I stopped supplements, I stopped everything, including coffee, anything that could have an effect. And it was that first cup, you're a little bit anxious. What's it gonna do? Is my heart gonna race? Do I dare have a cup of coffee? Because it seemed to create symptoms before. And I I I actually had my first cup in the hospital. It's like, okay, I'm gonna try this while I'm here, as long as I'm you know, I mean I've got somebody around me just in case. And I was thrilled that nothing happened. Oh, that's right. I don't even know if it increased my heart rate at that point. So as you pass through your sternal precautions now and everything, you're you're you're you're driving. You could actually ride your bike if you chose to. Are you in cardiac rehab yet?

SPEAKER_01 30:08

I did I did a couple weeks of cardiac rehab. And you know, it's it's mostly just cardiac exercise while wearing a monitor. And they never saw anything. Doesn't surprise me because they never saw anything before the surgery either. So they never saw anything that was concerning. So, you know, after a couple weeks, I felt like I can pretty much do this on my own. I mean, I haven't had a chance to do these things yet, but you know, I expect to start biking soon. I expect to start yoga again soon. I actually think I'm gonna do some jogging again soon. So, you know, I don't feel like I feel like I'm only constrained by the fact that I was sedentary for a whole year, right? I was lying down for a whole year. Now I'm coming back and able to do things, and I don't feel really constrained.

SPEAKER_00 30:59

Can I ask you, you mentioned that insurance would cover Stanford because they were in network. Greece is out of country, so I'm I'm sure that there was some challenges there. How did you go about the expense of the surgery and everything?

SPEAKER_01 31:18

Yeah, so insurance did not cover any costs for surgery. I'm fortunate that we have some savings and some means we just paid for it. We just paid for it out of pocket. I will say that paying for something out of pocket in Greece is probably a quarter or a bit what it would be in the United States. There's a there's a cost savings because it's in Greece, but it's a significant chunk of change. But you know, I can't looking back, I can't think of any money that has been better spent in my whole life.

SPEAKER_00 31:55

Well, no, yeah, that that I would say at at whatever cost your life, right?

SPEAKER_01 31:59

I got my life back. I got my life back. So that you know, there's almost no cost that that wouldn't be worth that.

SPEAKER_00 32:07

Yeah, so many people, you know, work, they they they spend their health to gain wealth, only to find at some point they're spending their wealth to get the health. Yeah, yeah, you know, in your case, it's great that you were able to be able to carry that.

SPEAKER_01 32:28

Yeah, I don't know. I feel very, very fortunate that we were able to that cost.

SPEAKER_00 32:33

So for the benefit of anybody that's now engaged in this discussion, going, well, I can't find anybody locally, I don't want to wait nine months to get to Stanford or a year, whatever the case may be, the Greece experience was a good one, you know, all the way through from the hospital to the to the exit?

SPEAKER_01 32:54

Yeah, so at St. Louis Hospital, I was really amazed at the level of care that they provide. I I've been, because of my heart condition, I've been in the hospital many, many times. And it was shocking to me to be in a hospital where you would push that call button and someone would come within two minutes. I just I've never experienced anything like that. It was phenomenal. The level of care was very high. I I had it, I actually had a door to the outside, you know, some fresh air. I got fresh air and pretty and nice food. It was a very good experience, and the doctors were extremely professional throughout the entire experience and spoke perfect English. It was the hardest part was getting there and getting home. It's not that easy, and it's not that easy to do when you're healing badly.

SPEAKER_00 33:46

Right. Yeah, that even more so that's the exaggeration right there. That's the the exclamation point on it to have to get on a plane and sit for yeah, eight, ten, twelve hours, assuming it was a direct, but you probably had to make a stop somewhere too, right?

SPEAKER_01 33:59

Yeah, it was it was three legs. It was three legs total. Yeah, we we paid for the Comedy Plus or something like that. So we have seats that have a little bit more space on the way there.

SPEAKER_00 34:09

Yeah. Well, I I think for anybody that's in this consideration, I will put the links to both Dr. Grafitas and St. Luke's in the episode show notes so that if they choose to to investigate it a little bit further, they'll have an ease of access and they don't have to go through a bunch of process to get there. Now that you're complete with five months at five months out, can you give us a an idea of how you feel? You you said 90-95%, but tell us what that what that feels like. What is what is what are the sensations that are gone that you don't experience? You know, how the shortness of breath has improved to where it's back to normal?

SPEAKER_01 34:50

Yeah, that's a really good question. So I still have these little tanges of pain in my heart.

SPEAKER_00 34:58

On on that, this are are you clear those twinges of pain are tissue pain versus musculoskeletal pain from the sternotomy?

SPEAKER_01 35:10

I don't think it's sternony. Okay, but but I'm not sure it's angina either, because you know, they cut the heart, right? So the heart is repairing itself. There's a scar there, right? There's a scar there. That could be it. It's interesting because one of the things that still triggers me a little bit is it can be stress. But what what I'm experiencing now is, you know, on the they ask you the pain on a scale of one to ten, like I get the pain I'm feeling now right to one. And the other thing is it lasts very, very short amount of time. Five minutes, ten minutes, not hours and hours and hours like I had before. And I can't, you know what? I don't even know that I regret having those times because it reminds me of what I've been through.

SPEAKER_00 35:52

Right.

SPEAKER_01 35:53

It reminds me of what it's you know, it wasn't all the dream. Sometimes it can feel like a dream because of how terribly I felt before and how normal I feel now. It could almost feel like a dream. It's like, wait, did this really happen? Did all of this drama really happen to me? You know, it's almost a reminder, but I, you know, I don't feel like I have any shortness of breath. I don't feel like I have any, I don't have any pain while exercising. It's just, it's always been, even when it got bad, it was while I didn't, but there's always a component to it that was just random. You know, just come out of nowhere, feel a twinge of pain, and that that randomness is, I guess, still there. But I think the most important thing for me is I don't feel constrained. I don't feel constrained in my activities. I can fully embrace work, I can fully embrace physical activity without fear.

SPEAKER_00 36:51

That's a wonderful outcome. And I'm so happy to hear that you're at that point, you know, to the awareness of something. You know, every so often you get a little twinge or whatever that is maybe a bit familiar. For the benefit of those of us who have been through the surgery yourself inclusive, the longer you get from it, the less you remember the significance of the pain. And at some point you're like, I kind of don't even remember. I know it was painful, but I don't really remember that. And I I have to thank a guest that we had a while back, Dr. Peggy DeLong. She sent me this, this, she makes these these little bracelets, uh gratitude bracelets. Oh, and I'm not a bracelet guy. But I said, okay, I'll I'll wear the thing. And I found myself looking at it, there's a little silver bead on all these black beads. It's just a reminder because the pain's gone. And you know, every time I see it, it reminds me to be grateful for something that's happened either in the day or or you know at the moment, but always to remember that you know, I'm so blessed to be here because of the people that I'm surrounded by in the great medical care and the doctors who who corrected the condition. And you'll you'll get there too. You're already recognizing it. That little twinge is the reminder that, wow, it's that much better. And you know, how good is that?

SPEAKER_01 38:25

Yeah, I mean, you know, I mean, I I I'm I am a huge admirer of medicine and medical science, but in some sense, I can't think of this as anything but a miracle.

SPEAKER_00 38:37

I totally agree.

SPEAKER_01 38:39

It's just a miracle in me too. To have your life taken away and to get it back. You know, in my mind, especially after being denied surgery at Stanford, I wasn't sure I was gonna get it back. I wasn't sure I was I didn't have confidence that that was gonna happen. Amazing.

SPEAKER_00 39:00

I celebrate two birthdays now. The the the day I was really born and the day that I was reborn and given my life back is the surgical date. Yeah. And you know, people laugh when I say it, but I get to explain the story. Yeah, one thing that I'm asking of all our guests now, because I think it's really important for the people who are listening who are not in the space yet to where they've either gotten a proper diagnosis or that they've they've gotten a diagnosis and they haven't gotten to a surgeon yet. What would you say to the people who are at the point of considering what their next steps should be? You know, they they maybe have an option now for surgery, but they're afraid to go forward, or they're just now diagnosed, going, okay, and now what? I've got this bridge, but everybody says it's benign.

SPEAKER_01 39:45

Yeah, yeah. I mean, this is this is so tough. This is the struggle that we all go through. I think the first thing I want to say is that you know, I don't take the decision to go forward with with surgery lightly. I think it's a serious decision and something you should you should give thought to. And I, you know, the standard recommendation is to give the medicine a couple six months, give it six months to try to work before you go forward with the surgery. But at the same time, you know, once you've got a bridge, you've got it, you realize you have a bridge, you really have to become your own doctor. I hate to say it, but it's true. You really have to become your own doctor. You're gonna get a lot of advice that's not well informed. You're gonna get a lot of advice that's based on conventional wisdom and not not the latest knowledge. I I did a count before interviewing, I had four cardiologists tell me that my angina was not caused by myocardial. Four cardiologists, guess what? I was right, and the four of them were right. Right? I mean, that that's the truth, right? We know that now. I've had the surgery, I've had a 90-95% recovery. Those four cardiologists were all wrong. The only way I got through all of those gatekeepers and found a cure, of course, Dr. Kopiz is you know the hero of the story, but I had to be my own doctor. I had to read all the information about what is what is the myocardial bridge, why does it cause pain, what are the alternative explanations, what does my diagnosis material say? And I had to make my own decisions. If I had relied on the local cardiologist to make my decisions, I would still be lying on the couch in pain today. So, you know, you you you've got, unfortunately, with this condition, the other doctors are there for advice, they're there for advice, but you've got to call the shots. No one is gonna do it for you. And it's I mean, it's terrible. It's like in addition to being physically suffering, you've got to step up emotionally and mentally and take charge of the situation. I wish that wasn't the case, but it is, that's the reality is that you have to step up, you have to take charge, and you have to call the shots because unfortunately, the level of education on this is not very high, even among cardiologists. And you know, my question is was from the beginning was very simple. Okay, if it's not my myocardial bridge causing my chest pain, what is it? And no one could answer that question. And then I went to Stanford and they confirmed that it was my myocardial bridge. They said, maybe, maybe you shouldn't have surgery, but they confirmed that it was myocardial bridge, causing at least some of my problem. That was enough for me to know that I needed to go for it.

SPEAKER_00 42:35

I can't stress what you just said enough to anybody that that self-advocacy is everything with this condition, because you'll be pushed around, you'll be gaslit, you'll be dismissed, you'll be medicated, and you'll still have the symptoms. And to just remind everybody, it doesn't get better over time. It always deteriorates. There's nothing good that comes over waiting. Just you just have to keep pushing. And that's where the value of the Facebook group really comes in because you've got that support group when you get exhausted and you get tired and you want to give up. There's somebody that would say there's hope. Just keep keep going. You'll find somebody who is going to properly diagnose you because that's the first step in the process. And then you have to keep pushing and pushing and pushing.

SPEAKER_01 43:24

The thing that I see on the Facebook group that worries me is so many people want to go local. They want to find the local person, the local surgeon. This condition, in my mind, is serious. You want to find the best person, the best person that you can afford. I obviously I went to Greece, right? I was willing to go to Greece. Not everyone's willing to go to Greece. That's fine, but this is not something that you want to take the most convenient layout. You want to, you want to, you want to find the best person you can possibly find. Both for diagnosis and for surgery. Because you don't want to do this surgery twice. You want to do it once, right? You want to do it once, you find the best person. Don't don't try to go cheap or go fast or go. It's not a convenience thing. This is get it right. Get it right the first time.

SPEAKER_00 44:18

And there are some unfortunate stories where people have gone to somebody that said, Oh, I gotta, I can, I can take care of this. Come on in, we'll get it done. And it failed. And then they're in a world of hurt, and it's not something you can go immediately back and get re-corrected with somebody who is experienced. But you got now you have you have the healing process, the time in between with the symptoms still there, and then the next step of finding and ascertaining the uh maybe then you even have a bigger challenge of a doctor wanting to accept the case just because somebody else has already been in there, maybe messed something up and they don't know.

SPEAKER_01 44:58

Yeah, well, of course, we we've both heard multiple stories of people who have had stents put in, which is not the right treatment. Some people have bypass to put in that don't work. So again, you want to go to the most knowledgeable, experienced person you can, and that's not always going to be your local surgeon.

SPEAKER_00 45:20

Well, I I appreciate your comments. I see so much that you you share on the Facebook group, and it that it's just so welcome to see people who have had the surgery, who are still connected and you know, giving hope and support to those who are not, you know, uh who haven't had their surgery yet or are still in the process of diagnosis. So so thank you for that. And and thank you from the bottom of my imperfect heart for sharing your story with us and giving people hope who are in similar situations. And like I said, there's so many people just around me in a 90-mile radius that I keep running into who have either the condition and or have been unroofed. I'm sure you're gonna find in the Florida space that there's more and more people that are gonna come out, maybe we'll reach out to you in some way, shape, or form just to say, you know, where did you go? What did you do? Can you help? And you know, the fact that you're willing to do this says that you're engaged, you know, for the for the greater good of all of us. And I really appreciate that.

SPEAKER_01 46:24

Thank you. Yes, I guess the other thing I want to say is that the other thing you need to get through this is you need courage, right? And and yes, I took courage from uh Myocardio Bridge Facebook group, and I took courage from your podcast. So thank you.

SPEAKER_00 46:39

Well, wonderful to have you. And and I I want to hear when you get on that first bike ride, okay?

SPEAKER_01 46:43

Uh sure, I'll let you know, sure, absolutely. It'll be soon.

SPEAKER_00 46:47

Excellent. Lewis, thank you so much.

SPEAKER_01 46:50

Thank you, Jeff.

SPEAKER_00 46:53

Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group, Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. Imperfect Heart is a production of Hear Me Now Stereo.