Episode 9: Journeys 2 – A Nurse’s Dilemma: Sternotomy vs Robotic Unroofing.

SPEAKER_01 0:00

You know, I've been blessed, I guess, to say I have a choice. And and I and I'm taking that very seriously. It doesn't take away the fear. It doesn't take away that this is still heart surgery, but the choice right now is a more experienced team in dealing with unroofings that is close by. Or I travel across the country and have the less invasive, quicker recovery surgery.

SPEAKER_00 0:37

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. I could not be more excited to share what I'm about to share with you as I begin the program today. Many of you have not yet had surgery. Many of you may not even have had complete diagnosis as to the severity of your condition, other than to be in various degrees of discomfort or pain. And depending on that severity, concern for your very own lives. I get it. Uncertainty of our condition is one of the worst places to be. I have had many inquiries from listeners to the Imperfect Heart episodes. Each one as unique as the other, and each one as moving. For me, these are quite emotional as I understand where many of you are coming from. However, I focused on the medical and post surgery stories of those who have been fortunate enough to have been unroofed to date. What I've seen in addition to those incredible stories of perseverance and pursuit to accomplish the goal of proper diagnosis to relief of symptoms through the most appropriate means, is that many of you are still in the process stage, still wondering what's wrong, still waiting for formal tests to determine if surgery is an option, a relief of the symptoms our bridges create. As a result of what I'm hearing from you, I've decided to add a second monthly episode within Imperfect Heart called Journeys. I'll talk with people like so many of you that have not had a formal diagnosis yet, that have gone from fully functional adults to couch potatoes unable to do much at all due to the severe chest pain activity creates. Journeys will be the variety of stories we'll hear on the steps others have taken or are taking prior to surgery. We'll stay in touch and post their progress or lack thereof on the website myimperfectheart.com. So you can see exactly what's going on with them in a very linear fashion. Journeys is meant to be everything up to the surgery that may help others in the same space looking for answers, debunking myths, and taking their health into their own process of advocacy. Have we got a story for you in this episode? We've had academic doctors, PhDs, we've had doctors of medicine, MDs, and now, purely coincidentally, we've got a nurse, a rather burly nurse who lives in the upper Northern California area of Reading. He's 6'2, around 250 pounds, 45 years old, a husband, a father of four, and he suffered his first heart attack less than a year ago on August 27th in 2022. It's not an anniversary most of us wish to celebrate, but it's one most of us never forget. As so many of us pre-surgery have done, his is a mission of self-advocacy, and the efforts he is going through to determine what's best for his situation is not only impressive, it may give some of you comfort knowing you're doing exactly the same thing, asking the same questions, and in many cases, getting different answers. That's not all bad. We're all different people, and our cases present differently. But I think we would all agree there are some standards and we have some expectations of our doctors, our cardiologists, and our surgeons. We're going to hear the desperate attempts to minimize the pain or angina created by his myocardial bridge, the process to get an accurate diagnosis, and where he is currently as he contemplates options for stenotomy or the possibility of robotic unroofing. I'm very pleased he's willing to share his progress to date as he's getting closer to a decision to finally have his unroofing surgery done. Jeremy Hester, welcome to Imperfect Heart.

SPEAKER_01 5:10

Thank you very much. I appreciate it.

SPEAKER_00 5:12

So would you share with us what caused you to get started down this crazy unsettling route? I mean, what happened that you knew something was wrong? You're a nurse.

SPEAKER_01 5:23

I am a nurse. I am an ER nurse. So it's another busy day in the ER. I'm in our little busy community. And I went to have lunch and I started having a little bit of chest pressure. And that was around between somewhere between noon and two. And it was funny because I met my wife for lunch. She's also a nurse. And I met her and she saw me and she said, You look, you look like things aren't going well. What's going on? I'm like, You're giving me chest pain because I joke like that. And I was having chest pain, but it wasn't your typical chest pain. All it felt like, it wasn't, you know, the signs that we look for, crushing chest pain, shortness of breath. And I'm working super hard, so I'm already short of breath. So I just kind of push it to the side, ignore it. And as I was going home walking up the driveway, my wife met me outside, and she, of course, made the notation that you don't look so good. And I said, Well, I have chest pain. And she said, Why is it every time that you see me you have chest pain? Making a joke. So throughout that evening, we kind of sat on the couch and I got paler. I got diaphragmetic. And those are not my normal diaphragmetic sweaty, and those are not my normal ways of presenting in the evening. So about three in the morning, it woke me up. The chest pain, the discomfort woke me up. The next day I go into work and I promised my wife that I would do a 12-lead EKG when I got to work. One of our float nurses came by and she said, Do you need any help with any of your patients? And I said, No. And then I suddenly remembered, promising my wife. And so I said, Actually, I need you to do a 12 lead. And she said, On which patient? I said, on me. And so we went to another room. She did a quick 12 lead. And my 12 lead, like most of us, it was indeterminate. It didn't look right, but it didn't show that I was having a heart attack. There was a section of the 12 lead that might possibly look like I was having a potential pulmonary embolis, but it was such a stretch that my charge nurse ended up saying, You need to check in. I was like, How about we just do blood work and I'll keep working? And wait for the result to come back and say that I'm dealing with a random anxiety attack and there's nothing to it. I'm making this stuff up. It's all in my head. That's where I wanted to go with it. And she, of course, like a good nurse leader, said, No, we're not doing that. You go and clock out, you're now a patient. So we did so. We took blood work and time kind of started flying by, and the emotions, obviously, because I'm healthy. This is not supposed to be happening. And ultimately, in the back of my head, I thought, it's gonna be nothing. This is all in my head. And so when she came back with the positive troponin, my troponin ended up being 1.86, I believe. And that is clearly that something's wrong. And that shocked me. I mean, I immediately started tearing up, but I was like, whoa, wow, that's that's a tough one. So that was hard to face as someone who has never been really sick. We had just so happened to have our interventional cardiologist that came on that that day, one that I respect incredibly, and she took me straight to the cath lab and did a cath. My cath came back completely clear. And she noted I was so I'm going through the process in my head, like, wait, how is this clear? How do you connect a troponin like that, you know, to on a healthy person to having a heart attack? I don't understand. And she said, Well, you have a little bit of a bridge, but it's such a small bridge, I wouldn't think it would do anything. And I so we're brainstorming. I'm still on the table, and we're brainstorming. Could I be having spasms? And she said, It didn't while I was in there, it didn't show that you were having any of those. But the theory that we're gonna go off of right now is that you're you have spasms. We're gonna call it Prinzmetal angina and spasms that cause, you know, heart pain.

SPEAKER_00 9:41

So kudos, kudos to her, because that's something that so many docs miss. And they just dismiss it before they even have the discussion. But not only did she point out to you that you've got a bridge and the identification, you know, it's a relatively short bridge. I don't think it could be, but maybe, and she went right into the the spasm discussion, which that's a perfect progression. It's it's great to hear.

SPEAKER_01 10:07

It's to be honest, it's pretty amazing. So she she explained, she explained to me that she's had a few patients like this in the past, and ultimately most of them resolve on their own. And so she told me to expect within two, take a, you know, take a couple weeks, expect within two to three months that things will get better. And so immediately she she gave me, I believe it was mlodopine, and she gave me aspirin and sublingual nitroglycerin. And she said, whenever the pain starts, take a sublingual, and over the next few months it'll resolve. So I knew I was going to be off for a few weeks, and so we my family decided to take a holiday. And I I grew up in Hawaii, and so when we decided to go back and just just try to relax as much as possible. And so we immediately left and went to Hawaii and you know, visited my family there. And the problem was it wasn't relaxing, my chest pain got worse. And so the day we were leaving, my ankles all of a sudden, my lower legs just blew up, they swelled up, and the chest pain got worse. And so, and new little symptoms were happening, like to the point where like it was it was scary, you know.

SPEAKER_00 11:24

To be clear, we're having this conversation for anybody who's just picking up on it, maybe isn't aware. You have not had surgery yet. You still have angina, you still have the chest pains, they've progressed, they've gotten a little bit worse, as they tend to do once the symptoms present, because the compression of the artery from the bridge doesn't improve until something causes it to improve.

unknown 11:51

Right.

SPEAKER_01 11:52

Right. So to bring that story to a close, came back to the States in that period of time. It was about 10 days, and I went through a bottle and a half of nitro in 10 days. So, fast forward, I come back to the states and come back to our, you know, Northern California and fly into Sacramento. And the doc, we talked to the interventional cardiologist, and she informed me that is not normal, that I should probably go ahead and go to the hospital. And she'd already talked to the doctors there as UC Davis. But my concern was if I go into the ER and I don't have elevated troponin, they're just gonna kick me to the street. They're gonna say my labs are normal, go home. I went back to our home in Reading, having chest pain the whole way, trying to find some kind of place of peace to try to somehow to will the pain back into a place of not having pain. And went back to the hospital, which for me working there is embarrassing. So go back to the ER, have my labs drawn, and they were fine. And at the end of the day, I got discharged. You're fine, nothing's wrong. And let's change your medicine, let's get you off of MLodabine. So that's actually when we started the whole process of knowing that it wasn't going to get better over the next two to three months. It surprised the interventional cardiologist. So she said, This is outside of my wheelhouse. Let's get you to a specialist. So she put two requests in, one to Davis and one to Stanford. And my insurance didn't cover Davis, but it did cover Stanford. Problem was that I couldn't work. I could hardly get up. The pain would just start almost immediately in the day. Sometimes it would wake me up first thing, and there was no real rhyme or reason. Sometimes it would hurt in the afternoon, sometimes it would hurt in the morning. It it wasn't super clear. So we started, we switched medicine. I changed to nitroglycerin, the sublingual nitroglycerin. I changed to, instead of taking it all the time, I changed to just taking it when I needed it. We changed from the amylodopine to a cartasm, started a low-dose cartasm. It seemed to help a little bit, but in all of these medicines, everything seemed to help a little bit, but not enough. And not even enough, like to where I could bear it. Just like, I'm like, this is still terrible. And then you have the side effects of the medicine. So the cartasm seemed to work a little bit. And then what did we do? Aspirin, amlotopin got off amlodopene, started the cartasm. Oh, and then they started me on the isosorbic mononitrate isosorbid mononitrate, the long acting nitro. And the doc was like, you can't keep taking the sublingual like this. So that that was good, but it took me about two weeks to adjust to. When I'd get out of bed, I would almost fall down because of the dizziness, because my blood pressure was so low.

SPEAKER_00 14:59

So low.

SPEAKER_01 15:01

And so each one of these medicines that were added, or each time that we added a different dose to the medicine, I would have about a two-week adjustment period. And it was just, it's just discouraging because I didn't, I didn't have the answer.

SPEAKER_00 15:16

And it was just a remedy.

SPEAKER_01 15:18

Yeah. You know, I'm not a big like, I want to be reliant on these medicines for my whole life. And that just did not sound good to me. But they weren't even working. And so finally I heard back from Stanford. And but the earliest, and this was in, I want to say it was September, sometime in September, I heard back from them. And they let me know that they they would totally see me. So we went straight to their one of their specialists, Dr. Tremel, who is absolutely heard and her team are fantastic. But the soonest they could get me in was the next, I believe it was April, which was like five or six months, seven months away, which sounded terrible to me. So, you know, I'm thinking, I'm gonna lose my job. I'm gonna lose my job.

SPEAKER_00 16:09

You don't know that you're not gonna have a heart attack.

SPEAKER_01 16:11

Totally, yeah. And that's talk about a mix of emotions. I'm like, okay, I want to live, but I also want my family to eat. This is tough. So, I mean, I'm super thankful that they were able to get me in a couple months early. So they called me out of the blue and I'm home feeling terrible, feeling useless. I mean, in whatever it's worth, feeling super mask demasculinized. I went to one of our local cardiologists to set up because the introvisional cardiologist doesn't take on patients like that. So I needed, I knew I needed a cardiologist. So I went to the cardiologist, and this is where my story melds in with everyone else's. The cardiologist was completely dismissive. We sat down and he came in the door and he said, Well, I've looked at your your calf and it it says you're clear. So don't worry about it. And I said, Well, I was told by the interventional cardiologist that it's probably spasms. And the the conversation, to be candid, went as follows, said that you're fine. And I said, Well, but I had a heart attack. So explain it. He's and he just kind of shrugged his shoulders. And I was like, that is not an okay answer. So what I said was, your answer isn't satisfactory. So he said, Well, to be honest, I don't know. And I said, Cool, I'll keep my appointment with Stanford. And so it was a shrug your shoulders and thanks for your copay and goodbye. Is how it felt. And and I know and it's been really encouraging to read so many people's stories on the support group because I'm not alone. Correct. So I was pretty disappointed, obviously, and at this point, really frustrated. And so, and then of course, like, you know, he's saying I'm fine, there's nothing wrong. I'm thinking it might be in my head, but there's this thing of me having a heart attack that is keeping me in the game. Of this pain was so mild, and it's the same pain I'm still having every day, literally, every day.

SPEAKER_00 18:20

And so debilitating to the point where you can't go to work. Yeah, it was awful. There, there are so many people I can see their heads nodding from your first opening discussion of the drug therapy, the type of drugs they're going, got that. Yep, chest pain, nope, won't go away. Uh, now it's debilitating, nope, can't work. To the point, oh now I'm being dismissed by a cardiologist. Yep, been there, done that. And finally, I've got somebody who at least understands and acknowledges that I do have something and I have an appointment to see them. I can't wait.

SPEAKER_01 18:55

Yeah, yeah. It was just the interventional cardiologist that did my initial calf. I feel like it was almost a godsend, or it was a godsend for me personally. Like the fact that she had my back on it was amazing.

SPEAKER_00 19:11

She saved a whole lot of time. Yeah, because there's people that it takes them a year just to get to the point of somebody to acknowledge a year, some people, many years. Right.

SPEAKER_01 19:22

Right. Yeah, I I've noticed that in in the group chat. I I'm like, oh wow, my journey has been so discouraging in so many ways, yet it is so minimal compared to what everyone else on this group has been going through. And so I I count my blessings in that.

SPEAKER_00 19:40

Now you're you're off to Stanford. Yes. For your provocative test.

SPEAKER_01 19:46

Yeah. So I travel down, it's a just it's a different level. And I'm in healthcare. I I've worked at hospitals, and Stanford is next level for sure. The professionalism of of everyone from the the bottom up. It was an amazing experience. So I sit down, Dr. Tremel's PA came in. We spent some time, and then Dr. Tremel came in, and the appointment was amazing. She just confirmed. She said, Did you feel like this as a kid? Did you, were you short of breath? Did you, you know, and I was I was very active. I was a big soccer player, a big football player, and I was in shape as a young kid. And I just thought it was, she said, I bet you thought it was normal. And I said, Yeah. She's like, it's not normal. So I'm starting to connect the dots. I'm like, wow. And you know, in 10, 15 minute conversation, she pinpointed all of the things that I just dismissed as a young person, a young adult, you know, up until now, like as being kind of a normal thing. And she said, Well, it sounds like you qualify for more extensive testing. So if you're up for it, let's do it. And so we did. So I came back down and I did the cath with the extensive testing and the acetylcholine and the doutamine. And so when I looked up at one point, I saw my heart rate was 144. And Dr. I could hear her, and she asked, she said, you know, Mr. Hester, are you are you doing okay? And I said, I don't know what you just gave me. But if you don't stop, you're gonna kill me.

SPEAKER_00 21:26

Was that not the most unusual experience to be laying still and just feel your heart go from a resting heart rate to more to more to more to more to the most exertion you could have put on it? It's like, is this really happening?

SPEAKER_01 21:43

Yeah, I'm not running a treadmill. I'm not running a hill. Right. And and I remember saying it, and she said, okay. And immediately it started to slow down, but it felt like my teeth were gonna explode. So anyway, that that procedure was done, and you know, I had to recover for several hours and make sure I was good.

SPEAKER_00 21:58

What they're doing for For the people who have not had this provocative testing, is they're diagnosing not only the severity of the spasm, because they have flow meters in your artery at that point, but they're also diagnosing the flow forward and backward under stress and rest. Yes. Okay. And not to get technical in terms of what they call it, but that's that's the genesis of what they're trying to get out of that test. Right.

SPEAKER_01 22:25

Yeah. And so at the end of the day, they came out, and I was hoping for one or the other. And unfortunately, I was told that I had the words that were used very specifically was I have severe diffuse coronary artery spasms, and I have a significant bridge. That was disappointing.

SPEAKER_00 22:47

But also, and I'm not going to put words in your mouth. Was it not comforting to know? All right, now at least we know. We know what's causing this. The uncertainty of it is over. We know this is what these symptoms are, they're being caused by this bridge. And at least I'm one step closer to some resolution.

SPEAKER_01 23:10

Yes. Yes. And yeah. So if you take away my propensity to want to live in this reality that nothing's wrong, it was called denial, which we all know. Totally. Absolutely.

SPEAKER_00 23:27

For some reason. I don't know why it's so difficult for us to say I had a heart attack.

SPEAKER_01 23:31

Yeah, I don't like that at all.

SPEAKER_00 23:33

I still struggle saying it's like I had a heart attack. How did I have a heart attack? I took care of myself. You know, and and I heard you say it, and I'm sure a lot of other people are there. And we laugh about it because it's a reality. We have to accept the fact that it happened, but it's not our image of a person that has a heart attack, typically, no matter who you are, no matter what you look like, if you had that heart attack, the person you look at in the mirror isn't the person that was supposed to have a heart attack.

SPEAKER_01 23:59

So at that point, the conclusion that they had was because I right before my meeting, within the two weeks of me initially seeing them and then coming back for the calf, they decided to put me on what was it? I think biostolic. So the the beta blocker. Believe. I can't remember exactly. But the the goal was in that whole process to oh, it was no, they changed the medicine. That's what it was. They changed it to something else. And I responded well. So their hope at the time was we might be able to manage this without doing surgery with medicine. And of course, we you, you know, you want to go with a less aggressive route. And so they came to me and you know, part of me was like, no, let's just cut it out. Let's just, let's just go to surgery. It'll fix everything, and I'll get back to a normal life. And I don't have to be on these stupid meds my whole life. Because that's how I, you know, that's how you feel about it. So all these thoughts and all these fears, and you know, my mind just starts dancing and I can't sleep because I'm thinking about it. And so I'm like, okay, well, yeah, I guess we should try it with the meds. Well, like all the other medications, they worked for a time, kind of, and then they stopped working. But it wasn't giving me the quality of life. And so we went, we spent the next few months, every two weeks. I would have a phone appointment with Stanford, with Shannon, Dr. Tremel's PA. And it was fantastic. I mean, amazing care. Again, we would talk about it, we talk about my symptoms, and then we would talk about the potential medicines that we could change. So we quite literally were practicing medicine through adjusting the pharmaceuticals. How long do I wait before it's actually causing damage? So these are the thoughts that are going on, and to the point where we tried me on antipsychotics, on several antipsychotics, antidepression, however you want to, you know, whatever sensitivities you don't want to offend, antidepressants.

SPEAKER_00 26:12

And I appreciate you saying that because a lot of people don't even want to address that. Maybe that is there may be somebody who has symptoms, yeah, and that might help them. Absolutely. We don't know what's the the root cause of this, and not everybody's symptoms are caused by the same thing. And true to the point of many cardiologists, a lot of bridges are benign. So they could be triggered by something. So I I appreciate the fact that you did bring that up.

SPEAKER_01 26:41

Yeah.

SPEAKER_00 26:42

I'm gonna push you along to the next step there. So you you went that route and you kind of said, well, maybe there's an organic route I can go.

SPEAKER_01 26:49

Yeah, I was so frustrated. A doctor, a friend of mine, sent me a few articles from the NIH that were CBD's effects on endothelial inflammation in rats. I just want to not die, really. And so it's not something I per se believe in on a personal level, but I was so frustrated, I was willing to kind of do anything. And so I went and got some gummies and trial and error, and lo and behold, it worked every time. I didn't have any pain. I would take the gummy, and in about 30 minutes, pain now, and this is in combination with the other medications I was on. So it was very encouraging. On one hand, for me, they could control the pain, and it was the first time I had a string of painless days since the whole thing started in August. And it worked for four days. And on the fifth day, it stopped working and went back to what it was before, just like all the other medicine. So then talking with Shannon, she's like, Well, Jeremy, we were kind of at the limit of exhausting the medicine. It might be time to start talking about surgery. And all of a sudden, the reality of that scared me. So, of course, I'm like, wait a minute. I know I kind of wanted it before, but getting my chest opened up is really scary for me. And so I asked if we could try adding a beta blocker to the calcium channel blocker. Generally, they don't want to do that because the effects on the heart rate and your blood pressure are really bad. So we did, we added a low dose of that. The combination of what I've been doing has given me the best results so far. I still can't walk a block. I still can't exercise. But when I'm sitting here on the couch talking to you, it doesn't hurt for the first time in eight months, which is a positive, but it's not a way to live.

SPEAKER_00 28:56

So it's definitely exertional under this particular medical regime.

SPEAKER_01 29:01

It it's both. So if there's an increase in anxiety, it'll cause it too. We fast forward and and we start talking about needing surgery, and so we set up an appointment. So as so many people in the group are aware, Stanford has the leading research, as far as I know, for myocardial bridges. And in in Dr. Boyd, one of the leading surgeons. Are we having this meeting to determine whether I qualify? And so my understanding going down there is like, oh no, you do qualify. So I had the meeting with Dr. Boyd and his PA. He really took the time to explain things, go over the pictures, to talk about the potential fears of surgery, and to give me time to really think about it. And, you know, I had questions where I'm like, I'm kind of wanting to nail you down on some of these questions. And he's he's a great surgeon. He was like, can't nail me down on those because there's a lot of unknowns still.

unknown 30:03

Right.

SPEAKER_01 30:03

You know, one of the things that that is said is like, you know, what is a correlation between endothelial dysfunction, the spasms. What is a correlation between the spasms and the bridge? If you if you unroof me successfully and you fix the bridge, is that going to fix the spasms? And the short answer I believe I got was that there's not a guarantee. We think there's a correlation, but again, we can't basically we can't put our name to the fact that there is or there isn't. And that's honest.

SPEAKER_00 30:36

For those of us on the other side of this conversation right now, hearing you speak where you are, again, not on roofed yet, your pre-surgery. Yes, we're going, yes, there's a connection. It it does work, it does minimize the spasms. Totally. You rob Thornett, myself, the people we've already had on the show, we're all going, no, no, it's okay. It's okay. It does, it does work.

SPEAKER_01 31:00

I know. And I'm like, but what if I'm that one guy? Right. Like, you know, even asking Dr. Boyd, I'm like, so how many people die on the table? None. And I'm like, but what if I'm the first?

SPEAKER_00 31:12

Right.

SPEAKER_01 31:12

Like, you know what I mean? Like those fears. And I'm, you know, I'm a I've had a couple surgeries. Do I respond well? I don't respond great. Do I respond terribly? No, I'm still here. And so, you know, I I play that kind of devil's advocate sometimes where I'm like, but what if? So the consult went like like everything I've had uh at Stanford, the consult went amazing. They were incredibly professional. They took the time. These are you know, they're world-renowned specialists, and they've got other people to see. And I didn't feel like I was rushed or dismissed. And he was honest. He was like, this could help. Maybe it won't, but it could. Our percentages are pretty good of patients who've had it saying that it does help. And so that started the process of, okay, okay, we got to do the surgery. And he's actually the one who told me to come on the support group. He said, I hear there's a support group. It might be really helpful. Well, it's a four and a half hour drive from Stanford to my home without traffic. And I went on, joined the group, and I spent probably two hours of the drive reading stories, reading test results, reading, you know, testimonies, crying on several occasions because, well, holy moly, their story is like mine. And, you know, I've been dismissed by cardiologists and basically told, we don't know. Something's going on. It might be spasms. And here I am, like, am I making this up? Is this in my head? It's not in my head, but is this in my head? You know? So yeah. So we don't know what it is. So I met with Dr. Boyd, and the the big question now was, okay, when? When are we doing the surgery? You know, the options that they provide were thoracotomy, the one on the side, not a candidate. And then Dr. Boyd was, you know, pretty, pretty straightforward. So at that point, the the option really was sternotomy. I'm a little nervous. And I shouldn't be because I'm going to take care of it. But and then it's Stanford, it's Dr. Boyd, so I'm going to be fine. But it was still, you know, there's still a fear there. But, you know, reading as much as I could, and then all of a sudden I start reading, do robotics. Try robotics. If robotics is an option in your area, do robotics. Well, Stanford doesn't do robotics yet. This certainly, you know, the the robotics approach, I mean, the surgery alone is new. It's a new heart surgery. It hasn't been around very long. And so now, and robotics is even newer than that. I don't know what the date is, but it's so new, there isn't enough information on whether it's the way to go or not. And for me, that's scary. It was enough to play on my fears, enough to play on my concerns. And, you know, medically from the surgical site, recovery is stated to be about three months. Somewhere between three and three and six months, is what I'm told.

SPEAKER_00 34:17

So everybody is different. There are no two of us alike in any way, shape, or form. Our deformities are different. The process to fix us is different. And again, no two are alike. Even our chemical makeup is different. The way our hormones produce is different. So it's very hard and frustrating sometimes for somebody to just put out a blanket statement. No, it's not, it's not really like that. But to the point of I hear you very, very clearly stating, you know your body pretty well and and you understand it well. And for those who do, they're going to come out much better on the other side of this thing than those who don't, and just try to motor through and get resolved, and maybe don't understand all the nuances of the entire process. So I want to get you from the sternotomy discussion to the robotics. And I understand everybody's concern when they think, okay, this is faster, I'll be back to work. I don't have to worry about lifting as much because that's my job. Right. But there's also that fear of the sternotomy and I'm being cut open versus this robotic thing that I don't get opened up as much and et cetera. So you've done some extremely powerful self-advocacy on this because not only have you vetted well Dr. Boyd's process and Stanford's process, but you've now actually had a conversation with another doctor who does robotic surgery, correct? At least his team.

SPEAKER_01 35:50

Yes. Well, both his team and him. So I started doing research, and there were several, several, really only a handful, but for me a list of three to four robotic surgeons that did robotics, did the unroofing robotic approach that I potentially was interested based on, primarily honestly, based on people in the group. And so I started looking into their numbers, their websites, their reputations, and I settled on Dr. Balkey at the University of Chicago. And so I did speak both to the nurse practitioner of Dr. Balkey and Dr. Balkey. And it was a consult that was very similar to Dr. Boyd's, very professional. They answered my questions thoroughly. It was a great conversation. A lot of questions were answered. And it's a tough one because the robotics and the traditional approaches aren't enemies, but they're not friends. And, you know, some of the old school docs would be, you know, would say, no, you know, robotics is not experienced enough. And that's true. It's not. So the fear for me was do I go with the sure hand and potentially lose my job? Because the recovery is going to be so long that I don't have job security. So that was my big fear. You know, I'm I've already taken enough time off of work. And now I've had to go back to work to keep from losing my job and to keep my insurance and those the, you know, that process that I'm sure everyone is having to go through to one degree or another. So now I'm back at work having to pop nitros all the time to ride this real fine line of having another heart attack just so that I can have insurance to have a surgery to potentially save my life. So it's a tough road, right? And so I'm, you know, one of the biggest allures of doing robotics is the recovery time. Like, you know, just to just to just to share my my process as I'm going through this, because I haven't made the decision yet on which one. I have the sure hand, the amazing experience at Stanford, absolutely professional group of people who are definitely the leaders in in myocardial bridges and know what to do and know how to fix it. I have no doubt. But my big fear is the recovery time. And with my job, that's gonna be that's gonna be a bit to be able to do what I do. They do, I think it's five punctures through the ribs, and one's a chest tube, and the other one is the you know, the tech. And with my chest cavity, like, how do you get over the heart? Where when you do astronomy, that is right over the heart, and that's hands in, and the approach is good. So I'm having to weigh like, does it give a good view? You know, I'm hearing one thing on one side, I'm hearing another thing on the other side. How much of that is just preference? So that's kind of how I look at it in this in the world. It's such a new, you know, way of doing it. Now, the numbers that I gathered are good on both, and the risks, the there's a pros and cons for both. You know, one of the big questions I had is give me your percentages, give me your numbers. And the problem is they they don't have enough to really have, you know, we're not really comparing apples to apples. And so whether that's Dr. Boyd or Dr. Balkey or any of the other doctors who do robotics, I have options. And I know that probably comes across as like a kick in the pants for some people because a lot of them would just love to have a surgeon that would say yes.

SPEAKER_02 39:41

Agreed.

SPEAKER_01 39:42

I don't want to take away from anybody that is walking through that because that my heart comes out to you. Like that's that's awful. And this is just, you know, I've been blessed, I guess, to say I have a choice. And and I and I'm taking that very seriously, like, and very thankfully. It's not lost on me. It doesn't take away the fear. It doesn't take away that this is still heart surgery. So the choice that, and I'm still in the middle of making the choice, but the choice right now is a more experienced team in dealing with unroofings that is close by, or I travel across the country and have the less invasive, quicker recovery surgery. The one thing I can definitely say that I'm gathering from the different people I've reached out to is no matter what, have the surgery. Yes. So the thing that for the people who are struggling with, like me, the people who are really struggling back and forth with making the choice of do you do you have robotics, do you have a sternotomy or a thoracotomy? Whichever route that you're choosing, do it no matter the approach, because it's going to improve your life.

SPEAKER_00 40:55

There is a consensus that the surgery does improve the quality of life. Yeah. Period. End of story. It doesn't always minimize all the symptoms or eradicate the symptoms, but it certainly gives you the ability to get the majority of the life you knew previously back.

unknown 41:12

Right.

SPEAKER_00 41:13

And even if you have to take some small dosage of medication, it's far better than it was previously.

SPEAKER_01 41:20

Right. That's what I've been told from Stanford is most likely, and they have to throw that caveat in there, right? Because it's not a guarantee. So most likely it will improve. So right now, of both of these surgeons, that whichever choice I choose is gonna be the right choice. That it is really ultimately a choice of one is like, you know, it's not abnormal for there to be a complication. Being that I'm on this side, if I go through Stanford, I can just go back to Stanford and have them do it. They know what they're doing.

SPEAKER_00 41:53

Right.

SPEAKER_01 41:53

If I have the procedure in Chicago, I'm going to my local hospital. Not as good of an option for me.

SPEAKER_00 42:01

You know, you know what I mean. To your point, everybody doesn't have the luxury of that option. Right. It may be just maybe their local hospital's willing to give it a shot and try it. Yeah. Right. Which may still be better than the consequence of living without it, because at some point the bridge will further restrict the vessel. It just happens over time. As we age, it continues to weaken, weaken, weaken. And at some point it can't reflex back, and the flow is diminished to the point of severity, maybe a heart attack, again, another heart attack or a severe heart attack. So I think any option of a choice to do or not to do is far better than no choice, no option. And because so many do have the we'll call it the luxury of choice to robotic versus sternotomy. It's a great discussion. And it's great for I think people to hear somebody who's actually going through that in their mind right now. And you've explained extremely well both sides, you know, the things to be aware of, the things that are going through your mind, the challenges, you know, mentally that you have to go through, the machinations of oh, well, this, this, this, this. And then the other side of your brain goes, Well, what is this, this, this, this? And you know, you have that extra burden of weight of your work.

SPEAKER_01 43:26

Yes. Yeah. On one hand, it would only it would it would have almost been easier in some ways if when I spoke with Dr. Balkey, if he was like, Yeah, no, because he does, he does have a reputation of he says no. He says no. Yes. Yeah. If he doesn't believe that he can provide a clear benefit to someone, and he was really clear with me. I can do the bridge. That doesn't necessarily solve. He says, so you have very bad spasms, and this this isn't guaranteed. To fix that. Now, we know from Stanford's research that and from my gosh, everyone in the support group that yeah, it does help. What percentage? Well, that's the risk we're taking. And that that is honestly where the minimally evasive, invasive approach has an allure. I started kind of down that path, quelling my fears. And so it's one of those things where if you want the sure thing and if you want a sure hand, like I will always recommend Stanford, even though it didn't happen yet, just based on my experience with their numbers. That being said, you do have a lot of people out there that are like, yeah, we got this. Like, did you do the testing? The best testers on this right now are Stanford. Right. They they know their thing. And and that's not to take away from anyone who has it's it's general testing. It's nothing extravagant.

SPEAKER_00 44:56

It's like it's like everything else. The more preparation, the greater the likelihood of a better outcome. Right. Right. And and that's everything.

unknown 45:05

Right.

SPEAKER_00 45:05

And I think we've seen in some cases where people maybe have gone to a different situation where they did have the unroofing surgery. And even in some cases, they didn't get the entire LED. They were still a piece roofed.

SPEAKER_01 45:17

Yep. Right. Like they're they're going into your heart. Like, and the best still make mistakes, but this whole thing, you know, like what we've talked about before, it it comes back to a level of of faith. Like, and it really does. Like at the end of the day, you know, whatever your belief system, higher power, whatnot, mine, you know, mine is very specific to me. Like, you know, at the end of the day, like my my health isn't in my hands. I'm gonna have to. I might, you know, do I trust a higher power? For me, I do, you know, but at the end of the day, you're putting your faith in searching that, you know, you're still having to trust yourself to somebody else.

SPEAKER_00 45:56

I I know your your decision is is imminent. That is. I'll be looking forward to it. Please share as you get to that point when you make that point. I will offer if you have any conversation that you want with regard to the sternotomy, which is what I had.

SPEAKER_01 46:09

Yes.

SPEAKER_00 46:10

I'm more than happy to discuss it with you at whatever point. Just thank you. You know, text me, email me, whatever. I will. But but I I can't thank you enough for your candor, your energy, your homework, which you know, this self-advocacy is so important. Everybody has said it, that has had a positive outcome. The doctors that we've spoken with have said it's so important that you push through to get to the information that you need for your personal situation.

SPEAKER_02 46:35

Yeah.

SPEAKER_00 46:35

And I sincerely believe you're going to come out with the best possible solution for you because of what you've been doing. Not to mention you've got a sense of humor about it, which we have to, otherwise, it gets so depressing and it can be so overwhelming. But I I I really look forward to A, you making the decision, which is the first step in this, and B, the outcome post. Yeah, because you're going to have the surgery. And I so look forward to that three, four, five weeks post-surgery when you're like, here it is. This is why I did this. Yeah.

SPEAKER_01 47:07

Yeah. Yeah. Because I can't live. I mean, ultimately my choices are have the surgery one way or the other, or live on disability the rest of my life.

unknown 47:16

Not gonna happen.

SPEAKER_01 47:17

It's exciting, it's scary. There's there's no question it's scary. It's we have lots of conversations about it. And the truth of the matter is, it is. This is these aren't little stakes that we're talking about here. And it's a big decision. Whether you make it alone or make it with your family, it's a big deal. For most of us, we've already come this far. Trudging through, it really becomes a stubborn issue.

unknown 47:42

Yep.

SPEAKER_01 47:42

This is where stubbornness is really a positive.

SPEAKER_00 47:45

Yep.

SPEAKER_01 47:45

Well, yeah.

SPEAKER_00 47:47

I say just the best to you in that struggle of decision. Yeah, it's a 50-50. It's it's there's only two options, which is kind of nice. You don't have four options, right?

SPEAKER_03 47:57

True. Yeah, that's true.

SPEAKER_00 47:58

And you know, we're we're really looking forward to it. And I am I'm really praying for you, man, that it whichever choice you make, that you you can make it quickly and that the remedy, the process is done equally as quick. Thank you. And and thank you again. Yeah, absolutely. Anytime. If you'd like to share your story on journeys in the process of getting to surgery, please visit myimperfectheart.com, click on contacts, and send me your information. I'd love to talk to you. Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group, Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website, myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. The views and opinions expressed in this program are solely those of the host and the guest and are not intended to provide, nor are they a suitable substitute for professional care by a doctor, therapist, mental health professional, or other qualified medical professional. Imperfect Heart is a production of Hear Me Now Studio.