Episode 13: Amanda’s Heart Journey Takes Another Unexpected Turn…

SPEAKER_01 0:00

And so for months, I've told the doctors, hey, this is what's going on. This is what I'm feeling when I'm doing ABC. This piece of paper, like, I could not lift this and move it without my chest hurting. You know, that just for me raised a red flag. And I was like, okay, this is not, I'm not crazy. Like, there is a stabbing pain.

SPEAKER_00 0:46

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. Welcome back to Amanda's Story, where we'll finish the unbelievable road to surgery, and she explains what has now occurred that took everyone a little bit by surprise. Now we're with Dr. Wong in April of 2022. Yes. So just a little over a year ago.

SPEAKER_01 1:35

Yep. And I had started keeping track of what I now know is a vasospasm. And so I would, when I would get the deep ones, so I mean I constantly had them, like little ones constantly throughout the day. So that became my new normal. And I was like, well, this is just my life now. But the big ones were the ones that would concern me. So when it would really feel like someone was stabbing into my heart, they would come in pairs of twos or threes. And then I would count how long. So they would last anywhere from 30 seconds to a minute. Well, this one day in April, I had six, almost seven in a row. And I knew and I started to freak out. And I remember that was the day I went to the emergency room again. And so my body, it was telling me like, we're not doing good. You know, like, and so luckily I found trying to get your attention. Mm-hmm. And luckily, like I found this group. I call them angels. Like, there's nothing else to describe them but Christy and P. G. Wong, like, they're amazing and they are saving lives. They deserve a lot of credit. Them and Dr. Nazareth, I owe them my life because they saved me. Yeah. So they bring us in and they tell us all the risks about the surgery that they hadn't done it before and that Stanford had decided that they were going to keep me local because at the point I meet with this team from the time I had my first heart attack to that point, my symptoms were the most severe symptoms they had seen to date and how rapidly they were increasing and the very real conversation of she has to have surgery. She doesn't have a choice. So PJ Wong does a second angiogram in June of 2022. And this time he goes through my groin and does a 3D view of the bridge itself and how it's functioning. And when I came out and woke up, he put me under fully that time. And I come out and Nazarov actually had come up to meet with my mom and I because he wanted to meet me and told me that he did not want to do open heart surgery if he absolutely didn't have to, but wanted to know the results from the angiogram. Dr. Wong comes out and he says, Was Nazarov here? I thought I heard him in the building. What did he say to you? If we don't need to do it, then we won't. He said, Amanda, you don't have a choice. I found secondary issues. And so he said, Not only is your bridge completely cutting blood flow to your body, and it's quite significant. It's bigger than we thought. You have to have surgery. So, and it was interesting when he showed me the results from the test. And I guess he said he had to reverse one of the tests pretty quickly because I started to go into heart heart failure. And he's never had that happen before. So it it looked like a tree from Halloween. Like all the blood vessels and arteries on the left side were open and then all pinched off at the same time. So not only was I having a lack of blood flow from the bridge compressing my lad artery, but I then had these vasospasms that were completely cutting off all blood flow on the left side. So I wasn't crazy. It was real and I it was there.

SPEAKER_00 4:33

And they saw it.

SPEAKER_01 4:34

And they saw it. So that was, I want to say it was June 16th, and I was scheduled for open heart July 25th of 2022. And at that point, I had to get ready at work. I had to figure all that out. And then I was told to literally do nothing, like rest, absolutely do nothing that would spike the heart, and to be very careful, just very careful. Yeah, I had open heart surgery on July 25th of 2022. They performed it at Sutter Sacramento. I had the dream team. So Dr. Nazareth. I also had his teacher, Dr. Hanley, and from Stanford as well. And I was told that Hanley never comes in unless cases are very complicated. And sometimes he just oversees them. And I got him there that day. And then I had Sutter's pediatric cardiac surgeon as well, Dr. Wantanabe, who is studying under those two. If I remember, I think I was number three for Nazaroth adults for unroofing. And I think they had only done 125 for their medical group at that point. They performed it at Sutter.

SPEAKER_00 5:36

So well, congratulations on getting it done because you stayed persistent. You knew and you self-advocated. You did not let up until you finally got somebody to acknowledge what it was. Yep. And if there's one thing that we can do with the program is get people to understand if you feel that you're getting an improper diagnosis, and we know from the Facebook page that so many people identify the same way symptomatically. Different situations that cause it, but symptomatically, something's wrong.

SPEAKER_01 6:06

Right.

SPEAKER_00 6:07

And keep going until you can get somebody to properly diagnose.

SPEAKER_01 6:10

Yeah. And even still, you know, I I think my parents and I, we've been pretty upset, I'll be honest, knowing that this adult congenital heart defect team was on the seventh floor at Sutter Sacramento this whole time. And no one, no one told us about it. No one referred me.

SPEAKER_00 6:30

Aaron Ross Powell And there are cardiologists who have even seen and experienced people with the bridges knowing the bridge is symptomatic who still will dismiss it.

SPEAKER_01 6:40

Yep.

SPEAKER_00 6:40

Just that's an unusual case. As opposed to supporting the individual that's telling you all these symptoms look the same as the other person. The things that I'm telling you are the same as the other person. I'm not that different. No.

SPEAKER_01 6:54

Yeah, you know, I just my hope, I guess, for the future would be that there is protocol once these bridges are diagnosed for a patient, whether or not they end up getting surgery. Because I know not everyone does need surgery with them, but I would hope that at some point there is a protocol that gets put in place once the diagnosis is there, because just all the chaos that I know I went through and now hearing other people's stories, just the amount of gaslighting and the dismissal. And if a protocol was put in place, just think about how many of us might have not had to deal with these symptoms as long, or people who actually died from these heart defects, maybe they wouldn't have died.

SPEAKER_00 7:35

Or people who are going years. Years. Yep. There are people that we've spoken with three or four or five years is a long time, but there's some since high school, they're now adults, 40, 50, 60 years old. Because nobody back then knew anything about this. And now that we're ge becoming more aware, I think the pendulum is swinging. And there's an understanding that about 40 to 50 percent of the cardiologists now recognize these as symptomatic, but that's still half.

SPEAKER_01 8:04

Yeah, there's still more. And that's where I really appreciate my cardiologist, Dr. Wong. He thinks outside of the box, and I really appreciate that about him. He just he loves rare things and he loves to study them. And we call him the brains of, you know, the whole thing. And Nazarov is like the hands. And so I wish more medical professionals had the ability to think outside the box. Because reality is, is if I wouldn't have told my story to my friends who knew a doctor, who knew a doctor, I don't know if I'd be here today. And that's the reality.

SPEAKER_00 8:40

Aaron Ross Powell Let me ask you a question now, because we're going to get to the post-surgery. Yes. Which for everybody is different. In your particular case, we're not quite a year.

SPEAKER_01 8:52

No, I'm actually I hit 11 months yesterday. Okay.

SPEAKER_00 8:54

So what what was your actual date in July?

SPEAKER_01 8:56

The 25th. My second birthday now. Yeah. Because it's the day I got a second chance to live. I totally agree with you. Yep.

SPEAKER_00 9:03

And I feel the same way. So post-surgery, almost almost a year, 11 months out. How is the heart?

SPEAKER_01 9:10

Well, she's better. It's really funny. I had nicknamed her Samantha from the movie Just Friends, Samantha James. She's like this crazy rock star. And like everyone loved her and hated her. And that's how I felt about my heart. So I nicknamed her Samantha. I had to find a lot of humor, honestly, to get through all of this. So I apologize if my jokes are a little corny.

SPEAKER_00 9:34

I think we all do. Okay. We have to. Yeah. It's almost impossible.

SPEAKER_01 9:38

Right.

SPEAKER_00 9:38

You will, you know, lead yourself down a very dark path if you don't.

SPEAKER_01 9:42

Mm-hmm. And I think all of us who have gone through open heart surgery, whether or not it was the myocardial bridge or whatever else got them there, there is there is a dark place, I think, before and after surgery, because life is now different from what you knew it as originally. But the heart, she's improved. She's not 100%. I will say that I can't go without medication, which, you know, the hopes was that with the unroofing surgery that I'd eventually be able to just go off a medication. And we tried it. I'm on my sixth medication now since surgery. But unfortunately, without medication, I still get the vasospasms. What has changed is my endurance is increasing. I'm not laboring for air anymore. So am I back to my normal self with that? I'm not blacking out anymore, which is amazing. So there has been progress since surgery. Definitely.

SPEAKER_00 10:38

And you know, those those vasospasms, endothelial dysfunction do heal. And it could take a couple of years. Yes. So, you know, once that artery's been constricted for so long and is constantly being squeezed, it's pretty irritated.

SPEAKER_01 10:51

Yeah.

SPEAKER_00 10:51

And over time, it tends to heal itself back up once it's been on roof. So you may still have you know a progression of improvement.

SPEAKER_01 11:00

They hope. The answer to that, what anytime I ask Dr. Wong is, you know, what does that look like? He says, I can't tell you. I can't predict the future. We just we track it. That's what we're doing right now. We're just tracking it. So she's improving for sure. I definitely like am proud of her. She's gone through a lot. Yes, she has.

SPEAKER_00 11:18

She's been cut.

SPEAKER_01 11:19

Yes. Yes.

SPEAKER_00 11:20

And so now post-surgery, sternotomy, and it's not all perfect.

SPEAKER_01 11:27

It's not perfect.

SPEAKER_00 11:28

Heart's much better, but there's still another issue.

SPEAKER_01 11:30

Yeah. So, you know, it's interesting. Recovery is a very interesting thing, I think, after open heart. And, you know, everyone's so different. I I think it's amazing that you're back to physical activity and other people too. I'm just not quite there yet. So cardiac rehab, I finished my 36th session this week on Wednesday. Awesome. Thank you. And I've had a very difficult time there. My heart really, it some days it's okay, some days it's not. It really just depends on the day and how my heart is feeling. So I'm definitely not back to any kind of running or like hardcore physical workouts. I can walk. And as of recently, I've been allowed to go to the gym and try to do lower body. And I tried the stair mill for the first time this last month, and I got my heart rate up to 160 and it didn't hurt. And so that was really interesting. So right now I get to play with it, but I also have to journal anytime I have a vasospasm at what heart rate and what I was doing. So I've noticed that with cardio, as long as it's a gradual increase, I don't feel the chest pain. But if I do like squats or any other kind of actual workout, the vasospasms hurt and they occur when at a much lower heart rate too. I think right now it's all trial and error. But yes, recovery. It's funny when you have your chest ripped open, it hurts. I don't, I don't recommend it to like many people. Everyone always asks, like, how was it? And I'm like, I don't recommend it ever, like never. And so, you know, you have the soreness from that surgery. And so they told me, give it two years. And even into the fifth year, I might still feel things, but two years full recovery. And so that's been the number in my head. And I asked them, well, you know, what will physical activity look like a year? And they said, maybe light yoga by summer. And I was like, okay, cool. So in my head, I've had light yoga by summer. And well, I ended up starting to feel very severe chest pain in my chest wall.

SPEAKER_00 13:36

Knowing different from the heart. For those of us going through this or have gone through it, you do recognize the difference. We certainly know one is a mechanical structural issue and the other one, you know. You just know.

SPEAKER_01 13:49

Yep. So I always refer to chest pain as my heart, chest wall as the physical. And so my chest wall pain started on the right hand side of my sternum, like near my breast muscle. And so I had started to tell my doctors quite early on, around I would say month four, something feels like it's stabbing. And I'm not sure what it is, but it hurts. And I remember Christmas Eve of 2022, I got stuck in bed and I couldn't get out of bed. Like I had moved my covers and it felt like someone stabbed me in the chest and then I couldn't move. And I got stuck in bed all day. And so I was like, oh gosh, you know, this is bad. It progressively was like that. And I remember I'd be at work because I had to go back to work three months after. In hindsight, I wish I would have taken the full six months, but the city didn't allow me that time. I couldn't open doors. I still have a very hard time opening doors with my right arm because it just hurts in my chest wall. And so for months, I've told the doctors, hey, this is what's going on. This is what I'm feeling when I'm doing ABC. This piece of paper, like I could not lift this and move it without my chest hurting. You know, that just for me raised a red flag. And I was like, okay, this is not, I'm not crazy. Like, there is a stabbing pain. They could not run any more tests on me for almost a year after surgery because I had had too much radiation exposure from all the cancer tests that had been done on me the year before. Finally, I meet with Nazarov at least three times, and finally he's like, Well, we'll do an x-ray. They do an x-ray, and I forget what month it was. I want to say it was around like month eight after surgery, and all the wires are in place. So he believes it's inflammation because the wires looked perfect. There was nothing poking. Finally, we're getting closer to this year mark, and finally, around month nine, I'm like, I can't do this anymore. So my nurse practitioner Christy said, we can't keep messing with this. Let's get her in for a CT. So they get me in for the CT, and I find out at my 10-month appointment last month that I have non-union in my sternum at the top. It's the part of the bone that looks like a diamond. And that is not connected. I do feel pain up in the top area of my chest, but then it turns out two of the wires are potentially rubbing up against a nerve. And that's the stabbing pain I've been feeling. Right now we're at the point of trying to figure out what the best option of correction is going to be. I've spoken with Nazarov, and he's okay with removing wire, but in his opinion, to redo a whole sternum to get it to close is excessive. And I agree with him. I do think it's it's excessive. But there's no plan A or B if sternum didn't close because it so rarely happens. So right now I'm waiting for a second opinion to see what else, if there's any other option besides redoing a full sternomy or just removing wire and leaving as is. That's where I'm at right now.

SPEAKER_00 17:01

What a journey.

SPEAKER_01 17:02

Yes.

SPEAKER_00 17:03

I don't think anybody I've spoken with, I know there's nobody I've spoken with that's had so many ebbs and flows of situations. And then when you think you're done, you're not just quite done. Because there's still a a piece not complete. And you know, we've seen other situations where people have had sternum issues, but not with all the other complications that you've had.

SPEAKER_01 17:26

Yeah. And so, like I said, everyone's case is so different. This is just mine. I felt bad when I spoke with Dr. Wong at the 10-month appointment. He he was devastated. He was hoping I would have a better quality of life after surgery. And he early on when I first started to tell them about the pains, you know, he said, My hope for you was that we give you quality of life back so you could live your life. He said, I just hope we didn't trade one for the other, right? Like we fixed one but now caused another. He was sad to see that this happened. And I remember I had already cried prior to him coming into the room. I cried with the nurse. She's really sweet. And I told him, I said, look, you guys knew the day I walked into your office, I was a wild card. Without you guys, I don't even know if I'd be here. So positive thing is you guys saved my life.

SPEAKER_00 18:16

Without the heart.

SPEAKER_01 18:17

Yep. We're not having this conversation.

SPEAKER_00 18:19

You're not here.

SPEAKER_01 18:19

Yeah.

SPEAKER_00 18:20

Sternum, man, we can figure this out.

SPEAKER_01 18:22

Exactly. So I told him, I said, you know, I believe I'm on the slow train to success. And that's when I'm going to just continue thinking. And so my recovery is just going to be a little bit longer than most. And it's okay, because this is just structural. He was like, I like that, Amanda. And it's a slow train to success. Yeah. I and and recently I've been saying this is how I know I'm not a superhero or superhuman because I'm still human and like my body's is still just recovering like a human.

SPEAKER_00 18:52

In case you got confused. Just a reminder. Yeah. You are a human.

SPEAKER_01 18:56

Yeah. You know, for whatever reason in my head, I thought, you know, after surgery, I'd well before I thought I was a really professional athlete, right? I was like, but man, you know, if my heart would have been perfect all this time, I really would have gone to the Olympics doing something. And I'm like, you know what? Surgery is going to allow me to do that. And well, reality is, is that's not ever going to happen. And I am human. So I'm just going with the flow at this point right now.

SPEAKER_00 19:23

So the expectation now is we're going to wait and see what's going to happen with that sternum.

SPEAKER_01 19:28

The goal now is hopefully light yoga by next summer. It's been a long journey, but I'm glad I'm here. And hopefully my story helps someone.

SPEAKER_00 19:37

I'm glad you're here, and I'm sure there's a lot more people besides me that are happy you're here too.

SPEAKER_01 19:41

Thank you.

SPEAKER_00 19:41

And with a long life in front of you, that you don't have to sweat. Am I going to have a heart attack tomorrow?

SPEAKER_01 19:47

Yeah. You know, it's funny. I think mindset, I'm still working through not thinking that way anymore. You have to have a will to live. I knew like my mom and dad couldn't live without me. They were my my reason. When you get down to the basics, right? Like, what do you live for? It's funny, my my nurse practitioner Christy, she says, You've been given this beautiful gift. She says, I know it's horrible in how you got here. She's like, but now you have this gift. Now go spread it to people. And that was a really sentimental moment between her and I. And I appreciated it. And like you said, the heart, as long as the heart gets fixed, you can make it through surgery. Anyone can get through this. It's a short amount of time. And now, even at 11 months post-stop, I'm like, wow, like I did this like almost a year ago. And I didn't think I'd be here today. It's not an easy recovery, but everyone's bodies are so different. Some people bounce back pretty quickly, others maybe are a little delayed like me, but I would do it again in order to get a second chance. For me, I've always wanted to be a mom. And I think for anyone out there who wants to be a parent, you know, and is going through this, there is hope. You just have to get to the point of getting the fix because the heart is so delicate. And so where I thought my life was over, there's now this possibility of hope. So I have my eyes on the future.

SPEAKER_00 21:11

Just not only your life, but another life.

SPEAKER_01 21:14

Another life. Recovery, still trying to figure out what I'm gonna do with my sternum. That's number one. And then once that's corrected, however it gets corrected, then I could fully start immersing myself into that next part of life. So whatever that looks like for me.

SPEAKER_00 21:29

Good for you.

SPEAKER_01 21:30

Thank you.

SPEAKER_00 21:31

Well, I'm so happy you're here.

SPEAKER_01 21:32

Thank you.

SPEAKER_00 21:33

I'm not necessarily looking forward to getting pulled over by you at some point as a law enforcement officer.

SPEAKER_01 21:39

I won't be an officer at this point. Turns out with everything I went through, that's okay. It's probably just not in my future. I work with the community, I do crime prevention, I help with neighborhood watch, I teach to schools and kids, and I do a lot of our outreach. So I'm doing, I like to call it God's work.

SPEAKER_00 21:58

So are you still involved? With the law enforcement. You are. Okay. So you shouldn't be an officer pulling me over.

SPEAKER_01 22:06

No.

SPEAKER_00 22:06

I still think that's fabulous. Thank you. Had you not gone through that sweet sixteen, you may not have discovered the bridge in time.

SPEAKER_01 22:15

In time. I don't think I was meant to be a police officer, and that's okay. But I was meant to be in that place and everything happens for a reason. Yep.

SPEAKER_00 22:23

So so I totally agree. Amanda, thank you so much for sharing your story.

SPEAKER_01 22:28

Thank you. Thank you for having me.

SPEAKER_00 22:30

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