Episode 12: Outrageous Diagnoses Lead to Surprise Solution for Amanda Pearlman

SPEAKER_01 0:00

I'm sorry if I cry because it's the day my life changed. That was the day everything changed for me.

SPEAKER_00 0:26

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. Our spectrum of guests on the program runs the gamut of professions. But I must say I've not yet had but am pleased to present a person in a profession I sincerely appreciate, and that's one of law enforcement. Amanda Perlman recognized her symptoms just two years ago at the age of 34. In high school, she was active as a gymnast in college cheer and generally a very active adult until she began her prep and training at Police Academy late 2020. Five weeks into the program, something went wrong. By the sixth week, it was clear she was not going to complete academy, and on December 27th, her birthday, she had the first significant heart situation and sent her to the hospital. In a most unusual diagnosis, her bridge was recognized early on but dismissed, and the plot twists and turns that she went through were some of the most unbelievable assessments and diagnosis I've ever heard on the program or seen online. This part one of a two-part episode takes us right up to the surgery and the incredible way that it came to be. Emotional, frustrated, aggravated, and even angered, she never quit believing in her body, and the knowledge that she knew what was causing her the familiar symptoms of a myocardial bridge was her heart and nothing else. It's my privilege to have her here to share her story. So, Amanda, welcome to Imperfect Heart.

SPEAKER_01 2:39

Thank you.

SPEAKER_00 2:40

We're excited to hear your story because you are the first person in law enforcement that I've spoken with. And what I think is really interesting is this particular affliction knows no boundaries.

SPEAKER_01 2:53

No.

SPEAKER_00 2:54

It's not about what you do, it's not about who you are, you know, race, color, creed, gender. None of it matters. And I'm really anxious to hear what brought somebody who is in the process of law enforcement training, who obviously is in good shape to a situation now where you're questioning everything post-surgery.

SPEAKER_01 3:19

Right.

SPEAKER_00 3:20

So we had a little discussion, and everybody heard in the introduction that this happened literally just after the holiday, after Christmas.

SPEAKER_01 3:28

Yeah, two days after on my birthday.

SPEAKER_00 3:30

On your birthday. Can you take us back just a little bit to where you first realized something wasn't right?

SPEAKER_01 3:38

Yeah, of course. So police academy is a whole beast in itself. And it's not for the lighthearted. You have to be mentally and physically ready to be there. And I had been training for Academy for over a year physically. And so I was feeling pretty good going into it. But I started to notice early on in the first few weeks that my body wasn't working with me. And I couldn't put my finger on it. I mean, when we're there, you're tired, you're getting yelled at. It's very intense atmospheres. And so I just was chalking it up to I'm not sleeping enough, maybe I'm not eating enough, and I just got to push harder. And so finally, week five, we're in the middle of a morning workout, and I feel something collapse in my chest. And the best way I can describe it was is it felt like just there was a almost like a heavy pressure, but just something broke. And all of a sudden, I couldn't do burpees anymore. I was laboring for air. I could barely do push-ups. And academy staff couldn't quite figure out what was going on. And I remember walking out of the gym. And when you're in academy, you don't walk out. Like you could lose your job. At the time I couldn't breathe and I didn't know how to tell the corporal that something was going on, but no air was going in. And so we thought maybe it was asthma. And so that was the first time ever in my whole fitness career I was laboring for air. That was the first moment I knew something was up.

SPEAKER_00 5:06

And you know, because you've been active, you know, being a gymnast and CrossFit and training and cheer. I mean, you've been through all this stuff.

SPEAKER_01 5:12

Yes.

SPEAKER_00 5:12

You know when something's wrong. You have a good understanding of your body from a younger age, right? All the way up till current in the academy. So what happened?

SPEAKER_01 5:22

Well, so I go home at the end of the day and I wasn't sure if I was sick. You know, it was COVID, so we were taking extra precautions. So, you know, if anyone was showing any signs of anything, they were like, go get tested for COVID and then stay home. And so it turns out I didn't have COVID. I wasn't sick, but I knew my body was shutting down. So I stayed home the rest of the week and came back week six. And that was the final week of pre-academy before actual academy started. And we do this workout called the Sweet 16. And it's 16 laps around the track, and you have burpees in between, starting from 16. Yeah, it's 16 burpees and then down to one. So it was a long workout. And I remember while I'm going through, my heart rate was up in the 190s the whole time. But I was going at an 11-minute mile-ish. I just I knew something was off. And we get back, we cool down, we go back to the locker rooms, and I'm in the shower. And all of a sudden I start to see black. And for anyone who's had a heart attack, I think all the symptoms are a little different. But I remember thinking, if this is it, put your clothes on. For whatever reason, I didn't want to die naked.

SPEAKER_00 6:34

So I just kept it's funny what we think about in these instances.

SPEAKER_01 6:38

Yeah, like it just that was all I could think of. And so I kept telling myself, if this is it, put your clothes on. If this is it, put your clothes on. And so I go back to my locker and I knew I started to fall into my locker and I was like, oh shit, this is real. This is not fake. And so I'm trying to get dressed, I'm blacking out. I I don't know exactly what happens, but two of the girls see that I'm starting to black out. They rush over and they put my arms above my head and they tell me, do not go to sleep. Whatever you do, don't go to sleep. And all of a sudden, everything from my face down to my toes goes numb. So I remember like my forehead went numb, my nose went numb, my lips, my tongue, my fingers, everything goes numb. And I can't feel anything. And I'm seeing black. At that point, it's funny because when you're at police academy, you have all first responders on hand very quickly. And we had empty.

SPEAKER_00 7:31

If there is a place to have a heart attack, it's not a bad one.

SPEAKER_01 7:34

No, that was like probably perfect circumstance, right? And so there's always EMTs in every class. So a couple of the guys I remember came over and they start taking my vitals. They're taking the uniform off of me. Academy staff was in the locker room. Like, I didn't want attention on me on my birthday that day. And then I had everyone. And then fire showed up shortly after that. And they start taking vitals, and they thought I was having a panic attack. And I've had those before, and it was so different. But they were trying to get my breathing under control. And I remember one of them telling me, How much have you eaten today? Did you eat enough today? And that day I had a breakfast and a snack before morning workout and water and liquid IV. So I was prepared for the workout. They finally told me that if I want, I can stay, but I can't work out the rest of the day. I can stay in the classroom, but don't work out. And otherwise I could go to the hospital. And so they gave me that option. And all I kept thinking was, is I don't want to lose my job. So I'm I'm going to stay. And so everyone clears out of the locker room. I'm still sitting down and one of the corporals stays with me. And so she just keeps talking to me and then would ask me to stand up and see if I could walk. And I'd go to stand up and I'd start to fall over. And so that happened a few times. And she was like, Absolutely not, Amanda. You're going to the hospital. And I'm admitted into the ER. I couldn't even walk into the ER at that point. So they had to get me a wheelchair. And I'm there all day. And so they start taking vitals and they know that there's something up with my kidney. So I was extremely dehydrated that day. My kidneys, for whatever reason, were not functioning correctly, but there was no asthma attack and it was not a panic attack.

SPEAKER_00 9:18

So, you know, emergency- So they ruled two good things out that you didn't have to deal with from you know somebody who wasn't as well versed on it.

SPEAKER_01 9:26

Right. But at this point, I'm just like, what happened? And so I'm asleep in the emergency room, and one of the male nurses all of a sudden wakes me up and he says, Amanda, wake up. Did you feel that? And I was like, No, what are you talking about? And he said, You know, I just have to check some stuff here, but we'll be back. And so I didn't know it at the time, but I guess my heart rate was spiking into the 150s and going back down and then up and down, up and down. And so that alerted the staff to start running tests on my heart. And so the days going on.

SPEAKER_00 9:59

So all this time they're not doing an EKG, they're doing nothing with the heart yet.

SPEAKER_01 10:02

No, nothing with the heart yet.

SPEAKER_00 10:03

Oh, okay.

SPEAKER_01 10:04

Yeah. Well, actually, no, I take it back. They did EKG. So protocol, when you get admitted into the ER, they take vitals, they'll do blood, they do EKG, and then you get admitted, right? And so they had already done all of that. But the heart wasn't showing. I I don't know. At the time that they did the EKG, I guess it was calm. So it wasn't showing any kind of weird symptoms, but they noticed it while I was sleeping. So this really sucked. My phone died. And so I couldn't make contact with my family. I was calling from the hospital phone and my mom didn't recognize the number, so she's not picking up. And finally, I kept asking the staff, hey, you know, am I gonna get to go home? And they said, you know, maybe, you know, we're just gonna hang tight. It's getting into the night. And I was like, oh my gosh, I'm not going home. And finally, I'm sorry if I cry because it's the day my life changed. But the main emergency room nurse comes in and she brings the staff with her, and they close the door behind them. And they said, Amanda, we're so sorry, we can't let you leave. We found something wrong with your heart, and we're so sorry, but you're gonna have to stay. And then they said, you know, you know it's your birthday, so we wanted to wish you a happy birthday, and we're so sorry. And they sang me happy birthday, and I have to say, it was the worst birthday I've ever had. So, yeah, that was the day everything changed for me. So I was admitted for four days, and really all you know at this point, Amanda, is that something's wrong.

SPEAKER_00 11:46

They don't know what. Just something's going on with your heart.

SPEAKER_01 11:49

Yeah, they told me that the heart attack enzyme was present.

SPEAKER_00 11:52

Okay, so you had the troponin levels elevated. Yep.

SPEAKER_01 11:55

Yep, and so that's how they knew. So they told me they were like, we don't know if it was a heart attack, we don't know what this was, but there's something there. And so that's how I first find out. So I'm admitted for four days, and the whole entire time, academy staff is texting, asking, Are you okay? What's going on? I'm like, Oh yeah, no, everything is fine. We we don't know yet. I didn't know what to tell them. And so finally, because it's COVID, they couldn't do the running stress test, but they did all of their stress tests. So finally, one of the main doctors who was on my case at the time comes in and he says, Amanda, I have to release you, but something's really wrong. And I don't know what it is yet, but don't go back to work, don't work out. And he said, just keep pushing for answers, try to get in with a cardiologist, just something's up. And so in my head, I'm like, Well, I gotta go back. I I gotta graduate academy. Like this, I'm fine. And so at that point, on the 30th, I get released. And I remember New Year's that morning, I got the phone call from the doctor. He called me and he tells me, Um, Amanda, I had radiology go back and take a look at the scans. And he said, You have a rare heart defect called a myocardial bridge, and this could take years to get answers for. And he said, I'm so sorry to deliver this bad news, but at least now we know what it was. And I'm gonna start you on some medication, which was metropol at the time. And um, but he told me you keep pushing for answers because you might not ever get a fix, but your life is now different. So he tells me that over the phone.

SPEAKER_00 13:35

Well, he got halfway there because at least he he identified it, which so many people don't even know when the doctor does. Right. And they don't share it because they see it as something benign.

SPEAKER_01 13:44

Right.

SPEAKER_00 13:45

So good, you know, good on your doctor for sharing that much.

SPEAKER_01 13:48

Yeah. And you know, I wish I could remember his name because he wasn't the cardiologist. Whoever he was, thank you. Yeah. Because without him having that really strong gut instinct, I don't know if anyone would have gone back to look at the scans. So that is the first time I'm told what it is. So I start researching and researching, and I see that Stanford is the closest clinic on the West Coast that's studying these things. And then I'm at my friend's house on the first. And I call my brother and I was like, hey, I need to go back to the hospital. Something's not right. So I get admitted again on January 1st of 2021. And I'm telling them I'm having extreme chest pain. I'm having a hard time breathing, and I'm starting to like see black spots. And they were like, Well, Amanda, you were already diagnosed with the bridge, but those are known to be benign. Maybe you pull the muscle like in your chest during your morning workouts. And I'm telling them, no, like this is not a muscle pull. And so I get admitted again overnight. They run CT scan again. I don't remember if they did MRI, but they ran more tests. And so on January 2nd, the cardiologist that had been looking over my case the week prior comes in and he's like, Amanda, you know, people have these things all the time, and you'll be fine. You can continue to live your life. Just take the metropol, and you'll be okay. But we did have accidental findings, and I was like, Okay, like, what do you mean? And so I guess they had found I have tumors in my vertebrae. And so he said, we don't know what these are. Right now we see three, and we're gonna need you to come back in three months to get them scanned again to make sure they're not growing. And I told him, I said, Is it cancer? Because I can't have cancer right now. I just found out I have a heart defect. And he said, We don't know what it is, but just keep an eye on it and come back for more scans in three months. But your heart is fine. That was January of 2021. So from January to March, I start doing work. I start asking around for referrals to different cardiologists in the area. I continued to have symptoms. They progressively got worse. I tried going to the gym, and it would feel like whenever I'd start to physically exert, it'd feel like my heart was jumping out of my chest. When I'd be asleep, my heart would wake me up. I'd feel severe chest pain, and then it like a big like thump, right? Like just very excessive heartbeats. And then again, laboring for air, the blackout spells, and and I kept showing up to work every day. At this point, work had pulled me from academy. I couldn't go back. And I had got put into investigations. And I remember just sitting at my computer and I'd be watching my heart rate spike into the 160s and back down.

SPEAKER_00 16:37

Sitting still.

SPEAKER_01 16:37

Yep. Severe chest pains. And I have to shout out to my coworkers in investigations because I think without their comedic personalities and positivity, I wouldn't have gotten through that time. They they're just really good people and they knew I was struggling, and they were always checking in every day. How are you feeling? How's your heart? Do you need help? And so, you know, I got really close with them. And so huge shout out to their support. And so, anyways, I get with a new cardiologist, and he just he never meets with me. He would only have phone conversations. He did decide to put a heart rate monitor on me for two weeks to track the heart remote. A Volter monitor or something. Yeah. Yep. And so he does see there's inconsistency in my heart rate uh throughout the days. And then I was supposed to log whenever there was symptoms. So anytime I felt a chest pain, anytime I was blocking out, I was logging it. I mean, there was so many logs. And at the end of the two weeks, he says, Well, you know, Manda, like I'm gonna keep you on medication. And he laughs and he says, You're gonna be okay. Keep living your life. You're you're fine. And I and I told him, I said, But I've been an athlete and like I've never functioned like this before. Like, are you sure? Can I get a referral to Stanford? Like, are you sure? Amanda, you don't need that. You're gonna be okay. March of 2021, I end up getting really sick.

SPEAKER_00 18:03

Sick like COVID or sick from the heart condition?

SPEAKER_01 18:06

You know, I wasn't sure because the day that these symptoms like get even worse. So I'm at home in bed and I start to get a chill down my spine. And then I can't get warm and I have like extreme chills. And then my heart rate, I'm watching it because I had my heart rate monitor on and it's stuck in the 150s, like 154, just I remember that number. It wouldn't come down. I hadn't told my parents about the masses in my spine at this point. Because at this point, I had moved home. I was told I couldn't live alone. So I moved home with my mom and my dad. And they were like, Amanda, we have to take you in. Something's really wrong. And so I go to urgent care and they say, Amanda, you have heart problems. Like, we can't help you. And this is not COVID because they tested for COVID. I didn't have COVID. So I get admitted to Sutter Roseville. By the time I get there, they can't figure out what's going on with my heart. They see it's elevated and couldn't get the heart rate to come down. And then so I get admitted again for another four days. And I knew something was really wrong because the medical staff was talking very quietly. And then the nurses kept complimenting my hair. Oh, you have really nice hair. Then at some point, my gut, and if women know that their guts are strong, but I could tell this to anyone. If your gut is telling you something's up, always listen because it's it knows. And I was like, there is a reason why they keep bringing this up. And I don't know, I don't know what it is, but I hope it's not cancer. Finally, day three rolls around, and that cardiologist of mine that had refused to meet with me in person, turns out his office was downstairs, and he finally comes up and meets me. And I was like, Oh my gosh, you know, I didn't think I'd ever get to meet you. I'm so glad that you're here. What are we gonna do about my heart? And he says, Amanda, I know you're really concerned about your heart, but there's a bigger elephant in the room that we need to address. And I was like, Okay, surgery, you know, that's that's gotta be what it is. And and he says, I want you to forget about your heart right now. And we believe at this point that you have a rare form of cervical cancer that has metastasized to your spine, and we we don't know what the outcome is going to be. So at this point, I feel for anyone who's gone through this, because it's terrible, and your whole world just feels like it's caving in. And and I was like, What do you mean, cancer? Like I have this heart defect, like I can't have cancer, like I'm 34. And he he asked me, he's like, Do you have kids? Are you married? And all I'm thinking is, is I haven't done those things yet. What are you talking about? And so he said, It's gonna be okay, but you're gonna have to prepare your family and friends because we don't know what the outcome is gonna be. He starts telling me about other young women that he's known that have fought it and have gotten through it. And I asked him, I said, but what makes you think I have cancer? Like, why would you say that? And he tells me that they had found two more masses in my cervix and a fourth in my vertebrae at this point. And and so he believed that all the symptoms I was having in regards to my heart were being caused from this supposed cancer that they thought I had. And so I thought my life had already changed. But here I am now being told I have this supposed cancer. So day four, the main doctor that had been overlooking the case comes in and he tells me that at that point radiation and chemo would start pretty quickly as soon as they got a positive biopsy back. They didn't know what outcome was gonna be. So just, you know, stay close to the people that I loved. So I kept going to work. I didn't tell anyone.

SPEAKER_00 21:56

Including your parents?

SPEAKER_01 21:57

I told my parents. Okay. So as soon as I was at Released, I told my mom and dad, hey, we have we have to talk. And well, so before I got released, they sent a nurse in and she was really sweet. And she was a breast cancer survivor. And she tells me, honey, if I could do it, you could do it too. And it's gonna be okay. And I remember she wanted to add me to support groups. I was so resistant to that because my gut kept telling me, you don't have cancer.

SPEAKER_00 22:24

Yeah, this isn't the issue.

SPEAKER_01 22:26

You, it's your heart. And I like felt so strongly about that. I was like, no, they're wrong. They are wrong. And I know they're wrong because I know my body and I know what I'm feeling. And this is not cancer. And so, but I had to go home and I had to tell my close family and friends what was going on because this is what I was being told. And I start a three-month journey of testing for cancer. Test after test after test keeps coming back negative. But doctors, my medical team, they were for sure certain it's cancer. The amount of stress that I'm feeling at this point, A, because I was an at-will employee at work. So, and they already knew about my heart defect because it was, it happened on city property. So it was a city issue, medical issue. So they knew about it. I couldn't tell them about the supposed cancer that my medical team thought I had. I would have lost my job, my benefits. And then I'm shit out of luck, right? But I can't tell you for three months straight, I cried going into work. I cried leaving work. And I think anyone who goes through these hard experiences, I would hope. I know I did, but I got good with my life and I just accepted where I was at. And I remember I would sit in my driveway and just tell myself, this is your life. These are the decisions that you've made. And if this is it, then we'll be happy with what you've done to this point. But I did not give up that it was my heart. And so I literally was telling close family and friends, like, it's gotta be my heart. I know that they're wrong. So finally, May of 2021. Oh, yeah. Complete back burner.

SPEAKER_00 24:14

And now you've got this added anxiety of a cancer scare.

SPEAKER_01 24:19

Mm-hmm. Yep. So if you can imagine my stress levels, I mean 20 out of 10. And thinking, okay, I'm only gonna live to be this age, and thinking of all the things I didn't do. And, you know, it just there was a lot mentally going on there. And so my symptoms were progressing as far as the heart was concerned. The chest pains had increased. The blackout spells were happening every day and would happen multiple times a day. And then the, well, now what I know is a vasospasm. I mean, they were so intense. It would feel like someone was stabbing me in the heart. And I went from a girl who could work out one day to a girl who couldn't even walk up the stairs at work or at home. I couldn't take my own groceries in. I couldn't put my own backpack on. Little basic things in life that people take for granted or don't think about, I couldn't do. And so I stayed adamant. I kept telling my GP, it's got to be my heart. You guys keep ignoring my heart. All this time you guys think I have cancer, but what are we doing about my heart? And so I stayed adamant. So finally, May of 2021, there is no cancer. I was right. You have to advocate for yourself. That's the biggest thing I can tell anyone is like you have to trust your body. You have to listen to your body and trust that sometimes the medical system makes mistakes and you have to be that loud voice that tells them, no, this is what I'm feeling. Don't veer off of it. And so finally I ask for a new cardiologist because this other guy And everybody's going now, okay.

SPEAKER_00 25:53

Well, wait, what was it? If it wasn't cancer, what was it?

SPEAKER_01 25:55

Oh, yeah, that's a really good question. Yes. Thank you for asking because I would have skipped. Turned out I had a polyp and a fibroid in my uterus, and then in my spine, they're benign tumors that are just sitting there doing nothing. They don't know why they're there, but they look like Orion's belts. It's really interesting. But they're like these little balls that range in size in four of my vertebrae, and they're just there doing nothing.

SPEAKER_00 26:19

With no impact.

SPEAKER_01 26:20

I definitely have soreness in that area. And I've had issues with my spine for years, just I think from all the impact from gymnastics and cheers. Yep. And then they think it could be scar tissue, but they don't know. Radiology said leave them. So I don't know.

SPEAKER_00 26:35

So we get to put that aside and get back onto the heart.

SPEAKER_01 26:38

Yep. I felt like I was back at square one with no one listening. So I asked my general practitioner, hey, can I get a referral to Stanford? I really need to get in there. And he said, Well, you know, I I don't know if I can send it. I'll send it. I don't know if it's gonna go through. And this is where insurances get complicated. So depending on what you have, you can't always get referrals out to where you need to go. I was stuck in network. And so with that said, my GP sends me off to a cardiologist that, from what he knew, was good. We had a very bad patient, like doctor relationship. All she concentrated on was young, 34-year-old, stressed about not becoming a police officer, very sad, might need anxiety medication, heart is okay, we'll continue to medicate.

SPEAKER_00 27:29

And boy, that doesn't sound unfamiliar, right? Yeah. How many people have said that in the description of what their doctors have told cardiologists, well-educated people? Yep. Stress, anxiety, we'll give you some Valium. Let's try this, let's try this, let's try this. Do you meditate?

SPEAKER_01 27:44

Right.

SPEAKER_00 27:45

And to your point of advocating for yourself and knowing your body, you know when something's not right. I think it's the best thing we can tell everybody to just hone in on what your body's telling you.

SPEAKER_02 27:57

Yep.

SPEAKER_00 27:58

I mean, I I I certainly concur, and I I I just can't stress it enough. You know, even the doctors we've had on say the same thing. The more you can explain to us, we don't know you.

SPEAKER_01 28:08

Right.

SPEAKER_00 28:08

The more you can help us help you, the better you're gonna be.

SPEAKER_01 28:11

Yeah. And I wish that was the conversation that her her and I had, but it just it was um, I would say it was one-sided. I was every time I had an appointment with her, I would list the same symptoms and tell her how they felt, when they were occurring, at what time of day, what time of night, and how they hadn't stopped. And I was very descriptive in those symptoms.

SPEAKER_00 28:34

And for some reason I believe you.

SPEAKER_01 28:36

Thank you. Yeah, I knew in my heart and in my gut I had to stay consistent because that's what was really happening to me. And I just knew at some point someone would have to see this, someone would have to listen. So finally she decides that she's gonna refer me out to one of Sutter's top specialists. And I said, Okay, great. When do I get to meet him? So he took a look at the case and said, I've never seen these before. And in his opinion, where my bridge sat, it was too complicated to do surgery on and that he would be risking life. And so, with that said, he said, continue to medicate. But we can do an angiogram and we'll get that scheduled. Finally, because of COVID, Angiogram gets pushed to December of 2021.

SPEAKER_00 29:26

You're a year out now.

SPEAKER_01 29:27

Yep, I mean, you're out from the first diagnosis.

SPEAKER_00 29:30

What a year.

SPEAKER_01 29:31

Yeah, I don't wish it on anyone. It's hard for me not to cry still when I think back during that time because it just was a struggle, and no one should live like that. So finally, my mom and I remember we prayed going into the angiogram, and my mom said, No matter how this turns out, as long as we get answers of some sort, that's all that matters. And I said, You know what? You're right. That specialist decided to go through my wrist that day and kept me under what he calls twilight. And I was awake through the whole procedure. It was the most uncomfortable thing. It hurt. And I knew everything he was doing in the test. And he was like, gosh, like, you know, you're so sensitive. And I was like, well, that really hurts. Like, should it feel like this? And he sees the bridge. He goes, Oh, there it is. Yep, I see it. It's there. And I was like, Okay, you know, are we gonna go anywhere? We're halfway there. Yeah. So I'm thinking, all right, we're gonna get some answers when I come out. So oh, this is gonna make people mad. We come out and he comes to talk to my mom and I, and he tells me, Amanda, the bridge is there. But in his opinion, it was not causing my symptoms. And he's now the second person to tell me that I want you to forget about your heart at this point. And he, I remember he pushes it to the side. He says, I want you to just forget about it. And in his opinion, I had a rare form of cancer in my endocrine system. He says, I think you're like Steve Jobs, and you have a rare form of cancer in your endocrine system, and your heart is not causing your problems. So at this point, he wants me to get a referral to an endocrinologist, meet with that person. If everything comes back negative and there is no cancer, then he wanted me to come back to him so he can study my heart for two years.

SPEAKER_00 31:26

Let me make a note of that. You'll be the first person I come back to, right?

SPEAKER_01 31:28

Yep.

SPEAKER_00 31:29

So This is the first time I've heard anybody go down the endocrine system discussion.

SPEAKER_01 31:35

And again, my gut instinct was I went through three months of cancer testing. I don't have cancer. This is my heart, and I know it's my heart. And I couldn't say anything to him at that point except, thank you, doctor. I appreciate your time. And my poor mom, you know, like she only knows what she knows. And, you know, she really felt strongly that I needed to listen to this doctor, but this is where I had to just take matters into my own hands and just know, like, they're wrong. They they're wrong. And I know that they are. So now here I am, January of 2022. We're a year out from the first diagnosis, and I don't know what to do. I asked for a referral again to Stanford, to the cardiologist and to the GP again. I think I had asked three or four different times. I don't know if they were ever sent out. The cardiologist was like, I can't help you with that anymore. You have to ask your GP. That's not my job to send out the referral. And I told her, I said, but he knows nothing about this heart defect. You're my heart doctor. Why would you not send it? She was so irritated with me. And I finally decided I'm not going to see her anymore. I was getting nowhere with her. And at this point, I had been on so much medication. I would have to go back and take a look at all the medications I had been on, but I had exhausted different medications for the bridge at this point. And the specialist had put me on a heart failure medication. And I remember when I went to the pharmacy, the pharmacist said, Amanda, this is for like very elderly patients who are like going to die. Why are you on this? And I said, I'm having heart failure. And he said, Oh, okay. Just maybe talk with your doctor again. And I just remember thinking, okay, well, we've exhausted everything. And now I'm on like the last heart failure medication. And even the pharmacist is questioning it. Like, something's not right. At this point, I literally start telling everyone my story. Anyone that would listen, I was telling them what was going on. And now work is really concerned. My my boss is like, Amanda, I don't know like if you should be here. Like, because even driving into work, I'd get the chest pains. I'd be in a grocery store, I'd start to fall over, I would be anywhere, and I would hide because these chest pains were so severe. And then I'm having a hard time talking, and everyone knew to just either not talk to me or talk very slowly because I was having a hard time talking.

SPEAKER_00 34:08

Because they knew you were having an episode.

SPEAKER_01 34:10

Yeah, talking was very delayed, you know, and the just very deep breaths because I couldn't breathe. It was starting to become a safety concern. So this is where life gets funny. Through work at the police station, I meet my friend Casey. Casey had heart problems too. She does not have a bridge, but she had other heart complications. And she has an episode of sorts at a horse show. And there was a woman there whose husband was a cardiologist, pediatric cardiologist. And from the story that Casey tells me, the wife goes to her mom and tells her, get on the phone with my husband, he can help you. So this is how they make a friendship with this cardiologist. So they've remained friends with him over the years. And Casey tells me, I mean, I really think you need to meet my cardiologist. I know he's a pediatric cardiologist, but yeah, I think you need to meet him.

SPEAKER_00 35:03

I'm a big baby, it's fine.

SPEAKER_01 35:04

Yeah. You know, I felt like it at that point. I was like, oh my gosh, that's so much. Like, just very dramatic at this point.

SPEAKER_00 35:13

With good cause.

SPEAKER_01 35:14

Yeah. And she finally asked, Do you mind if he looks at your charts? And I said, Yeah, you know what? I don't care. And it turns out he was a setter doctor, so he had access to my charts. And he takes a look at it and he goes, Oh my gosh, how is she still here? She needs help. And I guess he had seen also that I had a third blood flow in my heart that shouldn't have been there. And so he says, You know what? I'm going to pitch it to Stanford in our Tuesday meetings and see what happens. So turns out he sends all of his babies with heart defects to Stanford. And he works with a surgeon, Dr. Nazaroff, who is the pediatric surgeon for Stanford. And he has a hub office here in Sutter, Sacramento. And so he works with adult congenital heart defects there and also children. They go ahead and Dr. Hill was his name, pitches my case to the staff in the meetings on Tuesdays, and they say, Yeah, we'll take it. And so I'm told through my friend and her mom through text message, Amanda, don't worry about anything. Don't worry about insurance. They're gonna figure it out. They're gonna take your case. And I want to say that was Yes. Yes. It was March of 2022. Yeah. And so I just remember thinking, like, okay, God heard me. He did. I speak with the surgeon on the phone. He calls me and he tells me, before we do anything, I want you to meet my counterpart, PJ Wong. He is the cardiologist with the adult congenital heart defect team at Sutter Sacramento. He's brilliant. I want you to meet with him first and his team. So I said, okay, I talked to their team in April of 2022. And I talked with his nurse practitioner, Christy Sillman, who came from Stanford from the myocardial bridge team. She knew exactly what it was. And she says, Amanda, you're to a T are myocardial patients. I want you to know you're not crazy. And if anyone has told you you're crazy at this point, you're not. You're having very real symptoms and you need help. And I remember crying on the phone and being like, wow, someone knows what I have.

SPEAKER_00 37:23

Finally. Yeah. Finally.

SPEAKER_01 37:24

Yep. And unfortunately, I wasn't due to see them until June 15th or 16th of that year. And I have another major heart episode at work at my desk and I go to the ER. And I guess there was a flag on my account that said, if symptomatic, admit immediately. The ER never admits me. They had me out in the waiting room for almost 10 hours. And finally, I tell my mom, if I'm going to die, let me just die at home. I'm out of here. Like we're leaving. And so we leave. And I had called the adult congenital heart defect number that night, let them know what was happening. Christy calls me the very next morning and she's like, Amanda, I'm so glad you called. We're going to get you in sooner. So they literally meet with my mom, dad, and I the very next week. So what was supposed to be an unofficial visit now turns into an official visit. We met with the team for about six hours and they went over everything. I was one of the first cases that they've had come through the door. They hadn't done surgery on it yet. So Sutter had not had an unroofing surgery at this point.

SPEAKER_00 38:32

You're correct, because I went through Sutter as well.

SPEAKER_01 38:34

Yep.

SPEAKER_00 38:34

And they sent me to Stanford. That's how I got to Stanford.

SPEAKER_01 38:38

Yeah.

SPEAKER_00 38:38

That's why when I heard Sutter, I'm like, wait a minute, Sutter, oh, she's a year after me.

SPEAKER_01 38:42

Mm-hmm.

SPEAKER_00 38:42

They finally have the capability.

SPEAKER_01 38:45

Well, kind of.

SPEAKER_00 38:46

Okay.

SPEAKER_01 38:46

So kind of. Yes and no.

SPEAKER_00 38:50

Be sure to continue to listen to the next episode as Amanda completes the incredible story of a successful unroofing, only to find there's a problem nobody anticipated or expected. Given the twists and turns of this process, one could have imagined everything wouldn't have been perfect. Thank you for listening to Imperfect Heart. It's my hope that this information help 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 at 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.