Faith Carries Open Heart Surgery Patient to Successful Unroofing. Encore Episode.

SPEAKER_01 0:00

So I had the Ct angiogram and it showed a deep 25 millimeter myocardial bridge that went through the right ventricle. And oh great, I have the solution. But the doctor who did the test said, oh, that's a benign condition. We don't treat those. Those are not the cause of your symptoms.

SPEAKER_02 0:54

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. American Heart Month continues, and what better way to continue our efforts to grow awareness and acceptance of myocardial bridges than to celebrate another story of a successful unroofing procedure. As it is with each story, this one has heartbreak and disappointment over a very formative period of time. It progresses to a story so many of us have heard over and over, but with a most unusual twist. From an awareness of symptoms in the oh-so-familiar gaslighting at a very early age, Kelly Portillo had the fortitude and perseverance to take her situation into her own hands, and over time, certainly not overnight, she didn't give up. From improper diagnosis to rejection to identification of a bridge, only to be denied by both her cardiologist and the insurance company, she never gave up and finally found her way to Stanford. Her story is one of inspiration, admiration, and well, jubilation, as she is now symptom-free with a whole lot of life in front of her. Kelly, welcome to the program. We are so excited to have you here today because yours is a most interesting story. And I'm going to have you start, if you could, from that karate class when you were 13 years old, where you noticed something was up.

SPEAKER_01 2:55

Yes. In my karate class, which I had been taking for about six months, one day I was actually getting ready to spar. So I was sitting down on the ground when my heart started beating fast. And that was abnormal. I've never felt that before. And I started getting chest pain and it felt like a heart attack. Even though I was 13, I kind of knew what a heart attack symptom was. And I was having chest pain down my arm and felt really lightheaded. And I just sat on the sidelines for a couple of minutes and my symptoms didn't go away. So we ended up calling my mom, and my mom took me to the ER to get checked out. At the ER, the doctor just ran an EKG, no other tests, and said, Oh, you just have anxiety. You're 13 years old. You can't possibly be having a heart attack. So I was led to believe that it was just in my head and I was having anxiety, even though mentally I felt well.

SPEAKER_02 4:06

And that's scary for a 13-year-old kid. And as you grew, 13, 14, 15, these things kept occurring, right?

SPEAKER_01 4:15

Right. As I got older, I was having more episodes of my symptoms, of my heart rate beating really fast, and I was getting bad chest pain. And I was in junior high at the time, and we had to run the mile at PE, and I couldn't do it. I thought, oh well, I'm just out of shape and I have anxiety. So I kind of just became embarrassed of my symptoms because that's a mental problem, not a physical problem.

SPEAKER_02 4:48

And I'll bet probably thinking to yourself, what's wrong with me? Why, why am I like this? And those are really formative years where your self-esteem is being built and your confidence is being built, and here you are struggling just to maintain.

SPEAKER_01 5:08

Yes. It it was almost unbearable. And I let myself become really shy and just not wanting to talk to anybody because I didn't want to explain how I really felt. And but the doctor said, Oh, you just have anxiety. So I didn't know what to make of that at 13, 14, 15 years old. I tried to do activities, tried surfing, snowboarding. I was able to do that a little bit, but it was always such a struggle. And I was embarrassed that I can't keep up with the other kids my age.

SPEAKER_02 5:54

So you had become exhausted, shortness of breath, chest pains, even at exertion?

SPEAKER_01 6:01

Yes.

SPEAKER_02 6:02

So you get through high school, I'm imagining, with these symptoms that you're still thinking are mentally originated as opposed to physically originated. What happens next? How do we go into you know young adulthood after you graduate?

SPEAKER_01 6:23

After I graduated, the episodes became more frequent. And I was having them probably like twice a week, the fast heart rate and the chest pain. And I was short of breath all the time at that point. And so I would have these episodes where my heart rate would go really, really high. And you could actually see my shirt moving because my heart would beat so fast. But try to take ibuprofen and rest, as the doctor would say, go, you know, decompress for your anxiety. So I try to do that, and it was just getting harder and harder to live. And finally, one day that I got the episode again. I was at my aunt's house. She was making dinner, I was helping her, and I got a bad episode, and my parents eventually took me to the ER. And because I felt like I was gonna pass out at that point. And at the ER, they took my vinyl signs and my heart rate was 190. And so then they gave me an EKG and said, Oh, you have SVT, it's not really anxiety. So I was like, okay, I have a real heart problem. And so we just dealt with that. They said, if it happens again, just come back. But to follow up with a cardiologist. So I followed up with cardiologists, and they suggested that I could do an ablation, which it would be 95% successed if I did that. So I agreed that it's just a procedure. So I agreed to having my heart ablated when I was 19 years old.

SPEAKER_02 8:18

And so that was your first ablation for superventricular tachycardia. And in the process between 13 and 19, were you on any other medication other than just Tylenol or aspirin or anything like that?

SPEAKER_01 8:32

Well, about 13 to like 15. I was on anxiety medicine that that's a doctor prescribed. And actually, it made me feel worse. It had it made me feel lightheaded. I got more chest pain. My symptoms just were worse, and it wasn't even helping my anxiety. So I decided that I didn't want to take the anxiety medicine. But other than that, it was not on any medicine medication.

SPEAKER_02 9:00

And at 19 or so, you have the ablation. And what happens next?

SPEAKER_01 9:07

So I had the ablation, and you stay overnight when you have an ablation. The next day, my heart rate was fast all the time. It was about 140, just resting in the bed. My doctor reassured me that sometimes that happens with ablations, that things are open up now and the blood flow is going through your heart, that that should go away in a couple of months. But in a couple of months, I still continue to have the fast heart rate all the time. So they decided to put me on my topiel. And that helped some, but I still continued to have a fast heart rate of 140 resting. And when I would exercise, it would go maybe 180, 190.

SPEAKER_02 9:58

So really that ablation was minimal in its impact, and the Metropol was just doing what it could to maintain a still faulty something that we don't know yet what it is.

SPEAKER_00 10:12

Correct. Yes.

SPEAKER_02 10:14

So what happens next?

SPEAKER_01 10:18

So I got referred to a different electrophysiologist, and uh he suggested that I had a different arrhythmia, not SVT this time, that he thought it was something called inappropriate sinus tachycardia, that he was sure that if he ablated that area, my symptoms could go away. So I was about 20 years old at that time. So I agreed to have the second ablation for the second arrhythmia. And so I had that. And the next day I was in the hospital, and my heart rate was still the same. It was about 140 resting, 180 walking around. And the doctor said, Well, that ablation didn't work. We could do a third ablation, and I could try to ablate the areas that I think are causing the problem. And so I agreed to have the third ablation about two months after. And the ablation lasted, the third ablation lasted six hours, and he kind of just gave up and said, I don't know, your heart's just beating fast, and I'm not sure exactly where this is coming from. And he wanted to ablate my SA node, but my frentive was in the way. So he said that he couldn't do that because if he ablated the frentid nerve, I would have my diaphragm paralyzed for life. And I would be short of breath even more forever. And I he didn't want to put that risk on me, and I didn't want that either. So we kind of just left it at that for now.

SPEAKER_02 12:07

So after the third ablation, I'm sure you're still on the metropolis and trying to maintain, but nothing's really changed for the better. You're 21-ish years old. Right. What happens between then and the next few years?

SPEAKER_01 12:28

So about 21, I was on 200 milligrams of metropolis a day. I basically tried every medication there was to control the heart rate and chest pain. Nothing was helping. I was maxed out. And my quality of life was very poor. I couldn't go out with friends. I couldn't go to college. I couldn't just do normal life things. So my doctor felt bad and said, well, we could do a thoracotomy ablation where I could move the frenstic nerve and see if we could ablate the SA node and see if it could calm down the your fast heart rate. And at that point, I was so desperate because I was almost bedridden. I couldn't go out. My dad had to do different things for me. And I felt like this is not a life that I want to live. So I agreed to have the therichotomy procedure, even though later down the road my doctor told me that was the first time they've ever done it. They just made up that surgery and procedure. So when I was 22, I had that procedure and it was super painful. I burst an artery in my chest. I almost didn't make it. I was in the IC, thought I was gonna die because I was bleeding out from my chest tube. And thankfully they were able to give me a second surgery and save me. But after that, my heart rate did get better. I was still on medication, but something was still not right. I was still having chest pain and shortness of breath.

SPEAKER_02 14:16

And that was around 22, you said, correct?

SPEAKER_00 14:19

Correct.

SPEAKER_02 14:21

And you were somewhat of a guinea pig for them to practice the procedure on.

SPEAKER_01 14:28

Right.

SPEAKER_02 14:30

When you didn't improve significantly, maybe the heart rate came down, but the experience of symptoms didn't go away. What was the reaction? What did they say?

SPEAKER_01 14:46

They said that I just had to live like that. I was out of options. They didn't know what was wrong. They would always tell me there's something bigger going on, but we don't know. That I would just have to live like that. And I was in my early 20s and pretty upset that that was my life, but I accepted it because there was nothing I could do. Different doctors I went to, they all said the same thing. They don't know. They said, I think you're just born with a rhythmagentic heart. That's what they called it. There's no explanation of just that's just you.

SPEAKER_02 15:23

Yeah, lucky for you, right?

SPEAKER_01 15:25

Right.

SPEAKER_02 15:26

So somewhere in that time frame, you make a decision to say, this isn't working for me, and I'm gonna do something differently about it after now four ablations. And I think at some point something else happened too, where they put a pacemaker in.

SPEAKER_01 15:45

Yes, pacemaker, because shortly after the thorachotomy, I started having symptoms that I was gonna pass out. And so I got a whole terminator put on, and they said that I was having three-second pauses often. So they ablated my essay too much, and so now my heart was pausing and going too low. So their suggestion was to put a pacemaker in me so my heart wouldn't just stop.

SPEAKER_02 16:20

How old were you at the pacemaker page?

SPEAKER_01 16:23

23 years old.

SPEAKER_02 16:25

Okay. And what was it that caused you to say there's more here? I've got to find something. And how did you go about doing that?

SPEAKER_01 16:38

Well, I after the pacemaker, I felt a little bit better, but I knew there was still something wrong. And a couple of years later, I got another arrhythmia apib. So that's so many arrhythmias, and I was like, this doesn't seem right. And so I had another ablation for the apib, and I still continue to have frequent episodes of the chest pain, shortness of breath, fast heart rate, even after all these ablations and different medications and procedures. So I my insurance changed, so I had to go to a different doctor. And I told him, hey, look, I'm having really bad chest pain. It's going down my arm. I feel like I'm getting a heart attack. Please, if there's anything that you can do, I've had a treadmill test at Echo, but they said that it was this normal. So my doctor finally said, Well, since you're having all these symptoms, let's try to do a CT angiogram, a test that I've never had before. So I had the CT angiogram, and it showed a deep 25 millimeter myocardial bridge that went through the right ventricle. And so I was like, oh great, I have the solution. But the doctor who did the test said, oh, those are benign, that's a benign condition. We don't treat those, those are not the cause of your symptoms. And he even said, Well, everyone has that. It's it's not a big deal. But as I did my own research on myocardia bridge, which I've never heard before, I came upon Stanford's website and I was looking at all the symptoms and at every single one of those symptoms. So for me, I didn't think it was right that he said that was benign when I have every symptom of that heart defect.

SPEAKER_02 18:53

And by doing that, first of all, the one thing he did right, at least was he did the CT scan to identify what might be going on. The unfortunate part is while he discovers it, he dismisses it. And he was close on the other thing. Not everybody has one, but about a quarter of the population has one. And this is part of the process of the every one of us that goes through the discovery of the myocardial bridge, where people dismiss it, they call it benign, it doesn't cause symptoms yet. They can't identify what's wrong with us. And it's from us, for people who are symptomatic, it's easy for us to say, obviously, that's the only logical explanation of something that's different, especially in your case with the ablasions, the pacemaker, the SA node. I mean, there's nothing left to do. And yet you're still symptomatic. So the good news is you find Stanford, and about what time was that? What year? How old were you at that point?

SPEAKER_01 19:56

I was 36 years old.

SPEAKER_02 20:00

Okay, so so you went through a period of about eight years there where you just had to deal with the symptoms.

SPEAKER_01 20:08

Yes. I had to deal with the symptoms for about eight years. It was getting hard for me to work. I work in a hospital in the pre-op unit, and I could barely do that. I would come home and just like had no quality of life, just so tired, so much pain. My friend even offered to make me food every day because I couldn't even do that. And so it was getting worse and worse as I got older.

SPEAKER_02 20:37

Well, it's a great friend who's willing to help you to that degree, that's for sure.

SPEAKER_01 20:41

Yeah, she also works, she's a nurse and works in the hospital with me.

SPEAKER_02 20:46

So you get the connection to Stanford. Things are starting to look up a little bit because you now realize I've got this thing, and this thing matches their process. And what is the next step? And I know you had a little stumbling block in there as well when you were pursuing that was your insurance company, too.

SPEAKER_01 21:09

Right. I convinced my cardiologist to give me a referral at Stanford, even though he's like, well, go ahead and do it. But you know, the surgery is big and I don't think you should do it. Does he? It's probably not even gonna help you. But I did get the referral and my insurance did approve me for one visit, but at the last minute, they said, Oh, it's denied because it's out of network. But I was like, oh, I'm so close to talk with Dr. Schnicker. I said, I'm just gonna pay for the appointment because I don't want to miss it. And there happened to be a cancellation. So I got to talk to Dr. Snicker within three weeks of booking that appointment. And I didn't want to miss that. So I saw Dr. Snicker via a video appointment. And she was pretty convinced that this bridge was the source of all my symptoms since I was 13. And I had tried every medication at that point. So she didn't want to go on that route of trying different medications. So she said, if you are a candidate for the surgery, we would need a productive heart cath. So I would like you to come over to Stanford and get one of those. I said, okay, great. But when we went to ask for authorization for the heart cat, my insurance did indeed deny me for that because it was out of network.

SPEAKER_02 22:42

But you did take that bull by the horns yourself. And I think it's important for people to hear what you did. You're in the state of California, you're in Southern California. So for anybody who's listening in the state of California, this is a process that can be done. And I don't know about other states, but if you're similar to the insurance process in California, this may work as well. So share with us what you did.

SPEAKER_01 23:08

So I through my insurance, I appealed several times and they kept denying me and wanting me to go to in-network doctors that they thought could do the unroofing. But when I actually called the doctor, they didn't even know how to spell myocardial bridge. They had no idea. So I did uh do what they say and go to the different cardiac surgeons and electrophysiologists and cardiologists. And there's a process in California that's called Department of Managed Healthcare. So if your insurance denies you and you feel like you have a true medical problem, you can apply to them. And if they approve you, they overturn what the insurance says. So even if the insurance says no, if the department of managed health care approves you, then they have to cover everything. So I did that. It took me about almost a year or so to get through that whole process. And it was a lot. And eventually the Department of Managed Healthcare approved me for full coverage, 100% for the.

SPEAKER_02 24:23

Congratulations. That is such a great story to hear that you got through that first hurdle. So it was a year. You had the conversation with Dr. Schnitger, but to get to the provocative test, you had to go through this year's worth of insurance grief, but you finally got there. Right. Amazing. Congratulations for that. So now you got the opportunity to get in, get your provocative test, and what happens next?

SPEAKER_01 24:51

I had the calf, hard cath, and Dr. Snicker, I remember laying in the cath lab room, and she said, Well, your tests show that you are 40% compressed, my LED at rest, and you're about 80% compressed with exercise, that you would be a great candidate for unroofing surgery. I just couldn't believe it that I actually had a diagnosis and a solution. I was just sitting in the cath lab looking up at the ceiling, like, is this really real? Like I could get better from this, like 25 years of pain and suffering that Dr. Snicker was so confident that I could benefit from this surgery.

SPEAKER_02 25:44

And you then agree. Tell us a little bit, because I think your determination and perseverance through so many outside struggles on top of just the diagnosis and the access that you went through. Now it's time to get to Stanford and share with us what happened then.

SPEAKER_01 26:10

Well, after my hardcast, a couple of days later, I was scheduled for the surgery. About three days later, I went back, and my best friend was supposed to go with me to the surgery. But at the last minute, she got sick. So I didn't have anyone else to go with me. My dad was gonna meet me after the surgery, but I didn't want to cancel because a lot of money was spent, my flights were booked, my Airbnb. So I decided to go by myself to the surgery and go out in faith and trust in God that He has brought me through this for 25 years. Why would he leave me now? And he he won't. So I went out of faith and I went to the surgery by myself.

SPEAKER_02 27:04

And if I'm not mistaken, there was an interesting situation on the plane on the way out.

SPEAKER_01 27:12

Yes. So I flew into San Jose, and as soon as wheels of the plane touched down in San Jose, I got this sinking feeling like, oh wow, I'm here in a place that I've only been just a couple days ago, and about to have the biggest surgery a person could have open heart, and I'm by myself. And I started sweating and getting so much anxiety, like, I don't think I could do this. I know there's a lot of money spent, but I don't think I could do this by myself. And also the thought that Stanford puts like uh catheters, pain catheters in the day before surgery, but they told me I can't get sedation because I don't have anybody with me. So all these fears came into my head, and I was just shaking, and I was like, okay, I gotta do this, even though it was really hard. I stood up out of the plane seat, I looked to my left, and on the guy across me, his arm was tattooed. I could do all things through Christ who strengthens me. At that point, I knew that, okay, I'm doing this. I'm not alone. I'm alone, but yet not alone. So after that, I was like, okay, I'm okay. I'm gonna do this.

SPEAKER_02 28:40

Good for you. And that that's awesome. We have a gentleman that we interviewed for another program that we produce, and his line was do your best, let God do the rest. And you absolutely did your best. You got yourself there. So now you're there. You're you're gonna go through the process at Stanford, and your surgery was in August of 2022, correct? Correct. Tell us a little about the process and you know where your head was at going in and coming out, and and then we'll get to how you are today.

SPEAKER_01 29:16

So going in, I was a little scared. I had the pain catheters put in without sedation. So that was a bit hard, but my faith was in the Lord, and I knew that I just had to trust in him. So going into surgery, I I just I did that, and I felt like, okay, I'm not alone in this. So I went into that morning of surgery, and the staff is great at Stanford. I am a big Star Wars fan, so they were talking to me about that. They wanted me to do Chewbacca voices as I go uh under anesthesia. And the nurse even held my hand. She knew I was by myself in the operating room, and the OR nurse held my hand while I went to sleep. So I woke up in the ICU, I was not intubated. And right when I woke up, I felt like a weight got lifted off my chest. I felt like light as a feather, which I never felt that way ever. I thought maybe it was maybe I'm had too much pain medicine, but no, it was different. So I was able to talk. I wasn't even in pain. And I called my friend that night, and my roommate was supposed to come with me. And she's like, You said your voice is really different. You sound totally different than how you were. Like you had this little spunk in your voice, even though you just had open heart surgery like a couple hours before. So then I knew I'm I'm healed.

SPEAKER_02 31:00

Well, I can even see as you're telling the story, if you're just listening to the episode as a podcast, I'm looking at you as you're telling the story, you're smiling big, and you can just see it all comes back, the the revelation that I'm better, something's changed. And that's amazing to see. So you are post-surgery. And before I get there, endothelial dysfunction.

SPEAKER_01 31:27

What was do you know where you stood on the I had uh I was tested for moderate.

SPEAKER_02 31:34

Okay. Which means something to those of us who were severe endothelial dysfunction, which isn't just another symptom that over time you probably would have gotten there to where it just deteriorated and the artery just got more and more broken down to where it really began to function improperly. So good that even though it took 20 plus years, at least you got it when you were still relatively young.

unknown 31:57

Right.

SPEAKER_02 31:58

And you get through the surgery. I I assume your dad made it up there post-surgery at some point.

SPEAKER_01 32:04

Yes, the day of surgery that that afternoon he made it up there.

SPEAKER_02 32:10

Great. So you had somebody with you afterwards. How long did it take you before you actually realized that what you felt post-surgery immediately was real and something had changed for the better, for good?

SPEAKER_01 32:27

It was the day after. They get you up to walk. I walked around the nurses station and I had no chest pain. I felt the last time I had chest pain was the morning before, well, before the surgery. I walked around the nurses station with no symptoms. So it was very soon after that. I knew it's different. Um, that I'm cured.

SPEAKER_02 32:52

You almost have to pinch yourself and say, is this really happening? I'm I'm yeah, I don't feel it.

SPEAKER_01 32:58

Yeah, it didn't feel real. And I was like, well, if I feel this good the day after, how well am I gonna feel in a week or two? And I continue to get better and better. I was walking fast. The physical therapist at the hospital said, Wow, you walk really fast for just having open heart surgery. And I was like, This is not like me. I'm usually walking really slow and having chest pain.

SPEAKER_02 33:26

Today we're maybe what a year, a little over a year out, year and a half. What have you noticed differently about your physical capability?

SPEAKER_01 33:37

I um no longer have chest pain. I no longer have shortness of breath. I walk for miles at a time, and I um got a bike. So I'm riding a bike. Those thoughts never came into my head before, never exercise. I avoided all that. Now I want to do that. And I'm up now, I'm looking for things like, okay, next year, like I want to go snowboarding, or this summer I'm gonna go surfing. And so it just continues to get better. Actually, at my nine-month recovery mark, I had an opportunity to go to Israel with my church. And I got the blessing from Dr. Boyd, and he actually wanted me to go. And we went into Jordan and Petra, and I did a five-mile hike without a problem. I could have never done that before.

SPEAKER_02 34:31

How cool is that? What an experience. Period. For anybody, what an experience. But for somebody who just a little over a year earlier was unable to walk a block.

SPEAKER_01 34:43

Right. It was amazing. I walked all over Israel for 15 days and didn't have a problem. It was unbelievable.

SPEAKER_02 34:53

What would you say if you look back, really helped you get through this entire process from the uncertainty, the pain, and the the frustration in your 20s, which lasted you know eight, ten years till you finally realize I've got this thing called a bridge and I've got to do something about it. What did you lean on most for those people who are also in a similar situation? Going, I've just I've got this problem, I don't know what it is, I'm working through it.

SPEAKER_01 35:30

It's my faith in the Lord. When I was 15, I became a Christian, and that's my firm foundation, my rock. I've learned in life, anything could happen. And things change and my symptoms change. But what didn't change is the Lord, and He was there with me the whole time. And I really would just pray because it was so uncertain. My condition, doctors couldn't even tell me what was going to be my future. But I knew I had a future with the Lord, like no matter what, even if I were passed away from these conditions, that I would go to heaven because I put my faith in the Lord Jesus, and that's who I rely on. And my family and friends are great, but the Lord is always there and he doesn't change. He's the same today, yesterday, and forever.

SPEAKER_02 36:30

And I think that's so important for so many people who are struggling. And I know everybody's belief could be a little bit different, uh, but it's a belief in a higher power to some degree that if you have that support, it helps you get through these challenges. And so many of the people that we've spoken with on the program have said something to that effect. You know, I had a belief, you know, whether it was a higher power, if it was Christ or how they perceived God, whatever it was, there was something beyond them that they were able to rely on and lean on to support them through the challenges, especially the anxiety, frustration, fear of surgery. You know, when you were going into surgery, do you remember, like literally, as they were wheeling you in, what you were thinking?

SPEAKER_01 37:22

Yes, I was thinking, okay, no matter what happens, the Lord has me, and I'm gonna be okay.

SPEAKER_02 37:30

So, really, not this horrible fear of death. I'm scared to death, I'm not gonna make it, I don't know if I'm gonna make it.

SPEAKER_01 37:39

No, I didn't have that thought. I knew that no matter what, I was gonna be okay because God has never let me down and he got me this far to have a diagnosis, to go to Stanford, one of the top hospitals. I was confident that I was gonna be just fine.

SPEAKER_02 38:01

I'm I'm so excited when I hear people who are able to come back to a life, in your case, you never knew. Right. You you didn't get to experience that that piece of it. And you know, one of the things I think we touched on it when you first got out, or maybe as you were did did you go to ICU first?

SPEAKER_01 38:24

Yes.

SPEAKER_02 38:24

Okay. When you were in ICU, what was going through your head? I mean, now you're you're you know a bit drugged up, but you you sensed something was different. What were you thinking at that point?

SPEAKER_01 38:37

I was thinking that, well, is this at first, is this really true that I feel this good? I expected the worst. I don't have a well, I do have a high pain tolerance, but I don't. I've been through a lot. So it takes a lot of like pain medicine to calm me down. But I felt so good that it was like, is this really real? And I I was determined just to recover well and do what the doctor says and take one day at a time.

SPEAKER_02 39:13

And then your sternotomy, you're a little you're a year and a half out now, so you would know if there were any issues, you've been okay. No, no issues, no sternal pain, everything healed up properly.

SPEAKER_01 39:25

Yes.

SPEAKER_02 39:26

Good, good for you because we've had five women. Yeah, three of them have had sternal issues.

SPEAKER_01 39:32

And I saw that. I'm good. I don't have anything.

SPEAKER_02 39:37

Yeah, yeah. Me too. That's that's wonderful. Because I can I want to hear more that don't have the issue, so it doesn't appear that this is a common occurrence, because I I know it's not. It just happens to be that you know, three of our our people had it. So it looks like the percentages are in you know, they're against smaller women that you're gonna have issues. But I I think we'll accumulate now some success stories of of perfect healing. So, you know, congratulations again to you. And so things are good, work is good. You're still at the same hospital, right?

SPEAKER_01 40:13

Right, for 14 years now.

SPEAKER_02 40:16

Amazing. That's fantastic to hear. I know if I don't ask this question, everybody's gonna be wondering, what the heck? Do you still have the pacemaker?

SPEAKER_01 40:25

I do. I will have that pacemaker for life. My heart is now 100% reliant on it because they say your heart gets lazy when it has something to beat for it. So I'll have that for life. And it doesn't bother me. I forget I have it. I just get it checked every six months or so.

SPEAKER_02 40:46

And the pacemaker really is just there for the benefit now of anything that should be aberrant in an arrhythmia, which, if I'm not mistaken, when we were talking earlier, you've had no episodes of arrhythmia since the surgery.

SPEAKER_01 41:03

Right. I had my pacemaker checked about maybe four or five times since surgery, and I've had zero arrhythmias. Well, before I would have 3,000 a month before surgery.

SPEAKER_02 41:15

Have you shared any of this with the doctor that originally prescribed or diagnosed the myocardial bridge?

SPEAKER_01 41:24

Yes. I did tell him because I happened to work with him at the hospital. So he sees me all the time. And he's like, How are you doing? Did you go to Stanford? I said, Yes, I did. And I'm all my symptoms were gone. I I told him that. And he's like, Well, you look really good. Wow, that really helped. He's like starting to believe that this is a problem. And actually, my electrophysiologist, that's my cardiologist, is so amazed at my recovery and is like, wow, all these years I had so many problems, and all of a sudden I'm completely fine. That now that their process, they've changed it because of me. That if anyone has a symptom of myocardia bridge, they will be referred without hesitation to Stanford and get the treatment that they need. So I'm quite happy for others in my situation.

SPEAKER_02 42:17

That's outstanding. And you can have to be sure to share the episode with them to say, look, I got to tell my story, and maybe they'll look and see the other 15 people that are in the program so far that have also benefited from the surgery to where it's not even a doubt in their mind that these bridges are symptomatic. And once those symptoms start, they can be relieved. Not all to the benefit that some of us have, but certainly to change that quality of life for the better. Right. Would you if you were being asked, somebody says, you know, geez, Kelly, I'm I've got the same situation. I'm really anxious about it. I'm not sure if I should get the surgery. You know, I'm I'm just starting this process. I know you went through 20 plus years and I'm kind of in the same boat. I don't know if I'm going to find out enough, fast enough, whatever it may be. Well, what would you say to somebody who's just beginning that journey who now realizes they have a myocardial bridge?

SPEAKER_01 43:18

I would tell them to be an advocate for themselves, even though the doctor may say, like, oh, you have a bridge, but it's not like the cause of your symptoms. I would just go and push and ask for the necessary tests, ask for the referrals and don't give up. There are times where the days are long and you're in pain and you don't know what to do and you want to give up on life, but not to give up. And I never thought that I would get better, but in an instant, I was better. So if people can hold on to that hope that just be patient and Get the test done and there can be a solution for you, whether even if it's medication or the actual surgery, that there is hope and we should never give up.

SPEAKER_02 44:13

I I love that. And and I so believe it and I so appreciate you saying that. You know, I I thank you again so much for sharing it. I'm only disappointed that you're not related to the Portillo family with the hot dogs and Italian briefs.

SPEAKER_01 44:26

Me too. I love that place. That's Italian, but I'm actually Mexican Portillo. So I'm not, it's a little different.

SPEAKER_02 44:34

A funny little story on my end. As a kid, I grew up where the first Portillos hot dog stand, it wasn't a restaurant, it was a stand, like a mobile truck. I I grew up there, right? In in my neighborhood, one of the you know stores at the time in the shopping center, he would pull out in the front on the weekends and sell these hot dogs and Italian beef. So I grew up with that, you know, all my life. And every time I go back to Chicago, it's the first thing I do for lunch, is I go to Portillos and get either an Italian beef or a hot dog.

SPEAKER_01 45:08

No, they're so good. They actually have one here in Buenaper near my. I'm thankful that I got to even try it.

SPEAKER_02 45:16

Well, enjoy Portillos. The milkshakes with the French fries are perfect as well.

SPEAKER_00 45:23

Yes.

SPEAKER_02 45:24

Yeah, thank you again. My my sincere appreciation for you sharing your story. It everyone is so unique. And I I just I I love the differences because it lets people know, oh no, I'm different. Yeah, yes, you are. You are different. And that's why you need to go through the process individually for yourself. You know, everybody else's story is a little bit different, and you've got little bits and pieces of it, and that's great. So now you know you can move forward. You know, when you hear stories like yours, so many people are going to benefit from hearing what you had to say today, knowing that they can follow your steps to getting the proper diagnosis and that help that you gave in the process for insurance is significant. You know, from the bottom of my imperfect heart, thank you so much for your continued success and sharing it with us, your your new spirit and your capabilities. You are remarkable.

SPEAKER_00 46:18

Thank you. I appreciate that Jeff. Thank you.

unknown 46:21

Bye-bye.

SPEAKER_02 46:22

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.