Episode 7: Journeys 1 – Dr. Linda Cunningham Discovers the Source of Her Pain

SPEAKER_02 0:00

At this point, nothing will bother me, not even cardiac surgery will bother me because I am at the point of saying this is not me anymore. I can't do what I want to do.

SPEAKER_01 0:22

Welcome to Imperfect Heart, a place for you to join me, Jeff Holden, in conversations, discussions, and dialogue about our hearts and the impact myocardial bridges have on them. We'll talk with healthcare professionals, those in related fields that support our condition, and others just like us with stories of their myocardial bridge experiences. It's my intention for this content to inform, educate, entertain, and even motivate or inspire you in your personal journey on dealing with a myocardial bridge. Most importantly is to have you leave each episode with hope, knowing you're not alone and that what you're experiencing is real. I could not be more excited to share what I'm about to share with you as I begin the program today. Many of you have not yet had surgery. Many of you may not even have had complete diagnosis as to the severity of your condition, other than to be in various degrees of discomfort or pain. And depending on that severity, concern for your very own lives. I get it. Uncertainty of our condition is one of the worst places to be. I have had many inquiries from listeners to the Imperfect Heart episodes. Each one as unique as the other and each one as moving. For me, these are quite emotional as I understand where many of you are coming from. However, I focused on the medical and post-surgery stories of those who have been fortunate enough to have been unroofed to date. What I've seen in addition to those incredible stories of perseverance and pursuit to accomplish the goal of proper diagnosis to relief of symptoms through the most appropriate means is that many of you are still in the process stage. Still wondering what's wrong, still waiting for formal tests to determine if surgery is an option, a relief of the symptoms our bridges create. As a result of what I'm hearing from you, I've decided to add a second monthly episode within Imperfect Heart called Journeys. I'll talk with people like so many of you that have not had a formal diagnosis yet. That have gone from fully functional adults to couch potatoes unable to do much at all due to the severe chest pain activity creates.com. So you can see exactly what's going on with them in a very linear fashion. Journeys is meant to be everything up to the surgery that may help others in the same space looking for answers, debunking myths, and taking their health into their own process of advocacy. She's a native of Illinois, graduate of University of Illinois College of Medicine, and is now retired in Salem, Oregon after practicing there for 21 years. She's a mother of three adult children, has been married to her husband Ed, also a doctor, for 42 years. I'm very humbled to welcome Dr. Linda Cunningham to the program. And yes, this is our first interview with an MD on our side of the table. Linda, welcome.

SPEAKER_02 4:07

Thank you. I'm happy to be here.

SPEAKER_01 4:09

Oh boy, it sounds as if you were just settling in to enjoy the fruits of your labor and then this.

SPEAKER_02 4:16

I had actually retired in 2015, so I had saddled into retirement. But yes, this is uh diagnosis, and mostly since January, my increasing symptoms have put a huge damper on my physical activities.

SPEAKER_01 4:31

So it's it's interesting because we've had other guests on the program, and everybody's situation is different in terms of the way the symptoms appear. Some over a long period of time that they've known something was wrong and they were getting the improper diagnosis because nobody was thinking heart.

SPEAKER_00 4:52

Right.

SPEAKER_01 4:53

And then others, like you or I, where all of a sudden everything was good and then it wasn't.

SPEAKER_02 5:02

So well, actually it wasn't for me. I was astounded when I looked back through my medical records. I saved things from visits and all. I had actually been complaining of chest pain on and off since 2006.

SPEAKER_01 5:16

Oh.

SPEAKER_02 5:16

And I had just completely pushed it out of my mind. I looked back though, I had had EKG, I had had an echocardiogram, I had had physician visits, I had had ER visits. I totally ignored them or felt that because nothing was found on those tests, and because I had been a marathon runner or was still a marathon runner at that point, that it couldn't possibly be my heart.

SPEAKER_01 5:40

There is a word for that.

SPEAKER_02 5:42

Denial.

SPEAKER_01 5:43

Yes.

SPEAKER_02 5:45

The subtitle of my life is Denial Runs Deep.

SPEAKER_01 5:50

And so many of us go there, and it's detrimental in the long run.

SPEAKER_00 5:54

Of course.

SPEAKER_01 5:55

So tell us a little bit about your love of sport, the things that you've been doing that you no longer can do at this point, but how experienced you were and how active you were prior to the symptoms.

SPEAKER_02 6:08

Well, I had always been an active person. We love to hike, backpack, snowshoe, downhill ski, kayak. I had been a marathon runner, a triathlete. We had taken long-distance bike rides, you know, you you name it. I I'd done it. We climbed a mountain here in Oregon. You know, I I was I pushed myself and I enjoyed pushing myself. It felt good. In my marathons, I was, um, I wouldn't say competitive. I didn't qualify for Boston, but I came very close. And so I really wanted to push my body to see how far I could go. One of the times that led to an emergency room visit was after a long run of about 20 miles training for a marathon, I decided on the hill coming back up to our house, I'd push myself. Well, that didn't work out. I had chest pain, ended up going to the emergency room. And of course, they found nothing, even though they did usual cardiac enzyme testing. And so I got I got sent home. But then it was a few years later when I had chest pain that kind of came on and off with lesser exercise that I finally went in and said, something has to be done. Then I was admitted, this was in 2017. I was admitted to the ICU and I had an angiogram done. And the doctor who did my angiogram said, good news, your coronary arteries look beautiful, wide open, nothing wrong, except you have this little bridge. But lots of people have that, and it's nothing to worry about, just keep your heart rate low. And I was about to take off on the Camino de Santiago, which is a journey across a hiking pilgrimage across northern Spain. And we ended up hiking 400 miles in 40 days, uh, hiked up over the Pyrenees and several other mountain ranges, and I got chest pain, and I vividly remember going into a pharmacy in Pamplona, Spain, and picking up Zantac because I thought, oh, I'm getting park burn, thank you. And thinking that that was the answer. Well, obviously it wasn't in retrospect, it was the bridge giving me problems.

SPEAKER_01 8:18

Yeah. And not knowing, I mean, uh none of us know what that's going to cause when we experience the chest pain. And in my case, it would the vasospasms would create ventricular tachycardia. Almost as it got worse, almost every time if I had a severe vasospasm episode, I would go into VT. And to the point where I was wearing the life vest because they were afraid if it was sustained, I'm going down. And something needed to bring me back. And I say that because that that same again, the denial, we do what we think we can do because it's certainly not our hearts. As you're out hiking 400 miles, anything could have happened.

SPEAKER_02 9:07

Right. Anything could have happened. Fortunately, it didn't. I haven't had any arrhythmias to my knowledge, and no myocardial infarction, no heart attack.

SPEAKER_01 9:16

Wow.

SPEAKER_02 9:17

So I'm I'm very happy about that. But I'm not happy about the fact that now since January, things okay. So back in 2017, when he said I had this problem, he said, just keep your heart rate slow, but you really don't need medications. He did prescribe me metoprolol, but I didn't take it because, you know, I I didn't want to take medicine and I was doing pretty good. So we continued to hike, although there were a few times when we were hiking more recently in in the past couple of years when going up a steep hill, it bothered me. And I just said, well, I'll just you know back off a little bit and it'll be okay. Until early January and we did a hike that we had done before, but going up a hill, I experienced the pain. And even coming down the hill, it was still there. And I said, Oh, this isn't good. A few days later, we went snowshoeing at about 4,000 foot elevation, and I had it pretty much the whole snowshoe trip. I said, This, I need to check this out. And that's when I went back to the cardiologist and started having testing, including a treadmill test, just a routine treadmill test with the EKG apparatus. And it was very positive. I could see that myself. I was having some chest pain during the exam, but I still pushed myself because I wanted to get a good test.

SPEAKER_01 10:34

Right.

SPEAKER_02 10:35

And the cardiologist later came in and looked at it and said, Oh, but you didn't really have chest pain. I said, Well, I had a little. He said, Oh, I think this is a false positive, even though he's looking at it. He's looking at ST depressions with down sloping that I had seen umpteen times in my career, and he was calling it a false positive. I trusted this man. He was the one who had done my angiogram, but I don't think that was good advice.

SPEAKER_01 11:02

No, clearly not.

SPEAKER_02 11:04

Yeah. And so then, yeah, I had an adenosine test, but my heart rate didn't get high enough to give an adequate test. My heart rate was 64. We took off for a trip to Hawaii. I get the call in Hawaii. Oh, your adenosine test was negative, which is great. It didn't show any ischemia, but it that's not really proof one way or another whether my chest pain was due to the bridge. So I kind of did a lot of slow beachwalks in Hawaii and just waited it out and then got put on medicine and basically have slowed way, way down to try to prevent chest pain from coming on.

SPEAKER_01 11:43

Has the chest pain chest pain become more and more frequent over the course of this last year now?

SPEAKER_02 11:50

Yes, very much so. Yeah, really since January, it suddenly got a lot worse. Until January, I was pretty much, we were my husband and I routinely would walk seven, sometimes ten miles at a time. And I was having no problems. We weren't speed walking, but we were going maybe three to three and a half miles an hour, which is a pretty good clip. Now I'm walking about one mile an hour because I did if I go any faster, I get breathless or get chest pain. So it so instead of zipping around my neighborhood, walking fast, walking long distances, walking with my group of friends who walk fairly briskly, now I am at my snail's pace around the block. And not comfortable, it doesn't feel like me.

SPEAKER_01 12:34

I'm pained hearing the discussion because I get it. I've been there and I hear so many other people with the same situation who don't have a clue what's going on. They're not even advanced in the awareness that it's something with their heart yet until they figure it out and somebody does give them a proper diagnosis. In our correspondence, you actually mentioned that you've never even heard of a myocardial bridge when you were practicing. And then that left you with some questions. Tell me a little bit about that.

SPEAKER_02 13:06

Well, I was a primary care doctor, so people would come to me first when they had symptoms, and oftentimes it was chest pain. And of course, a typical workup of chest pain might be an EKG, a stress test, chest x-ray, those sorts of things. And if you don't find anything and the history sounds typical, the next step is the referral to the cardiologist. And a lot of those referrals then would come back after an angiogram often or more other sophisticated testing like an adenosine stress test, they would come back with no ischemia. And so then the person would come back to me and say, What now? And if the person had had an angiogram, I don't remember ever seeing the words myocardial bridge on the angiogram, but I'm concerned now that some of those people may have had myocardial bridges that either weren't mentioned on the angiogram report or that were mentioned, but were discounted as being the cause of the symptoms. And so then, of course, you'd send someone on to a gastroenterologist or someone else to try to figure out if it was maybe esophageal spasm or something else causing their pain. I'm just dismayed now that I may have missed people who had myocardial bridges just because of my ignorance. Just today, I looked through some of my old textbooks. There's not one mention of myocardial bridges in my internal medicine textbook or any other books that I looked through. It's it wasn't recognized.

SPEAKER_01 14:31

I know when I was on the floor of our local hospital, the cardiology floor, after an incident, I did have a heart attack. And somebody mentioned, well, he's got a myocardial bridge. Half the people on the floor had no clue. This is a cardiology floor. And they're like, this is interesting. I was this character that is in great shape, and they can't figure out why I'm having these spasms. And they still they did not correlate or wouldn't associate the bridge to the vasospasms either. And that's a year ago. So we're still in that space, and I recall Dr. Schnitker saying we're probably at about 35, 40 percent pushing 50 now, in awareness by cardiologists that these bridges do create symptoms and they need to be addressed. And you know, it was you know, my thought, I wonder how many people actually die of cardiac arrest. Looks like an occlusion from you know the coronary artery, but it's because of a bridge.

SPEAKER_00 15:34

Right.

SPEAKER_01 15:34

And we just don't know it, which means we need to do a lot of work to get people to understand it because we can probably correct a lot of situations that need some attention.

SPEAKER_02 15:44

Hopefully so, yes.

SPEAKER_01 15:46

So where are you currently in your process?

SPEAKER_02 15:48

Well, I've had those uh preliminary tests here in town, and I'm waiting for uh my referral to Stanford. I'm told I'm in the queue, but it may be July or August or even September before my initial visit down there to get the full evaluation, which I assume will be another corner angiogram uh with the um intravenous ultrasound and the FFR testing and all of that with Dr. Trummel.

SPEAKER_01 16:15

Yes, it is all that. And regardless of what you've done, wherever you've done, I think they go through the process themselves just to make sure that it's done their way. I I recall, I think everything I did was twice as long at Stanford than what I got when I was here. It's like I've already done that. I don't have to do that again. No, no, we need to do that again. You know, we're gonna do an MRI again. We really do we have to do that? Uh most of us don't like sitting in that tube. And it's it's always always an experience.

SPEAKER_02 16:44

Aaron Powell At this point, nothing will bother me, not even cardiac surgery will bother me because I am at the point of saying, this is not me anymore. I can't do what I want to do.

SPEAKER_01 16:54

And and I think that's really important for people to hear that uh it's a decision you have to make, but uh the alternative could be a very dire consequence. Right. And we don't get to know that. You've got a great sense of humor. And in in in in the situation, you know, a lot of people really get bummed out about it and it's depressing. How do you think uh that's playing into your day-to-day frustration in in allowing you to get through just the pain, it occurs, you can't do, you can do. Sometimes it's better, sometimes it's worse. And I I'm asking it from the perspective of people who will listen who are in the same situation to to help them lighten up a little bit.

SPEAKER_02 17:43

Well, I I never let a moment pass without being grateful for it. We were walking this morning and we stopped and watched three downy woodpeckers on a tree because the joys of nature, I don't know, are so much more apparent to me now that I'm slowed down and I'm able to enjoy all that. And so I try to take each day, each moment at a time, be grateful for all the times I don't have chest pain, be grateful for the fact that I can get up and walk a little bit. I mean, I read, I read and heard on your podcast about people who basically are are men bound and housebound. And at least I'm not that. I can still get out a little bit and do some activity. So I just try to maintain that standpoint of gratefulness for what I can do still, and gratefulness for each day, and grateful that I'm at a place where I can I can go to Stanford. I can go pretty much anytime I need to go. I'm grateful for being at a time when this can be dealt with. If this was 20 years ago, they probably would have said, take nitro or let's put a stent in it, or something that would have been either helpful or very harmful. So I'm happy that we're I'm I'm in 2023 and I'm getting diagnosed now.

SPEAKER_01 19:00

That's just an incredible attitude, and I I love it. So if if there was one thing from your experience to date that you would say has been most critical so far on your journey, what would you say it is?

SPEAKER_02 19:14

Making sure that I did the background work. I checked out what needed to be checked out to get myself farther along, because I'm afraid if I had stuck with the advice I was getting, I would have installed. And so I'm I'm happy that I I pushed things and said, no, I need I need more information. My husband was doing all kinds of research on the internet, also trying to help me out. And just we together decided that Stanford was going to be our best bet. So partly that I'm I'm grateful, very grateful for my husband. He's a gastroenterologist, but he he pinches as a primary care doctor too, sometimes. I'm grateful for my children. My my our daughter is a uh an ICU nurse, and I'm so happy that she said, I'll come out and help take care of you when you get when you have surgery, or if you want me to be there at the time of surgery or right after, I'll I'll just drop everything and come running. Our sons have also been very supportive.

SPEAKER_01 20:13

So that's wonderful.

SPEAKER_02 20:15

Happy for all of that.

SPEAKER_01 20:16

That is great to hear. I want to read something from our first correspondence to give everybody a perspective of your perspective. And it goes So I'm a doctor, athlete, chest pain denier, anxiety prone, myocardial bridge patient who's gone from walking seven miles a day on average in 2022 to a recliner. I've gone from fear and dreading surgery to bring it on.

SPEAKER_02 20:47

Right.

SPEAKER_01 20:48

I've gone from believing my cardiologists to getting angry and frustrated by sheer ignorance and to trying to convince them to take it seriously. Telling them I needed more testing, telling them the best medical centers for dealing with this, trying to convince them that this should be a subject for continuing medical information at cardiology meetings. I I can't applaud that enough. I mean, I think it says everything. You're accepting it, you want to get it dealt with, and I think we all agree we need to get the cardiology community aware that this condition is real, it creates symptoms, it can be debilitating, and at least in my opinion, I believe it can kill people.

SPEAKER_02 21:39

I actually followed up on that idea of cardiologists not getting enough education on this, and I emailed the organizers of the last American College of Cardiology meetings and asked, has this subject been covered? They did have a panel discussion in March, and Dr. Trummel was on the panel and they had a debate. Debate about whether they told me that yes, they had this panel discussion and then a debate about whether myocardial bridges caused symptoms and what was to be done. So it is out there. People are hopefully attended the panel discussion and are learning about this more. One of the other things that has really, I don't know, been important to me was being taken seriously and taking myself seriously. Before I was, I realized that this all all these chest pains were due to a bridge. I thought I was suffering from bad anxiety disorder or somaticizing, which is what we say in medicine. It's some people say it's akin to hypochondria, but it's really just noticing symptoms and, you know, kind of pushing those to the forefront. But now I realize I'm, yes, I'm a little anxious, but mostly it's this. It's it's the myocardial bridge, the chest pain, and the shortness of breath that were making me anxious. And I would get anxious in situations where I had to speak in front of a crowd or something like that. And I think a lot of it was due to that because I would get pain. I would get pain with any sort of you know, stressful situation, strong emotions. And wow that was very, very uncomfortable. It is very, very uncomfortable. So I'm trying to stay very mellow now. So being taken seriously and knowing that I there's a true physical problem that's causing this rather than me just being anxious. It really helps. Well, yes, that too.

SPEAKER_01 23:34

I can't wait to follow you through the journey. I hope, I hope that you can get into Stanford sooner than later. Yeah, keep keep pushing. Bang on him, be it on him. Where am I? What's happening?

SPEAKER_02 23:46

Yes, I'm on a first name basis with joy.

SPEAKER_01 23:49

Oh, she's okay.

SPEAKER_02 23:50

The insight coordinator. Yes, she picks up the phone and says, hello, Linda.

SPEAKER_01 23:54

I love it. Good.

unknown 23:56

Good.

SPEAKER_02 23:57

Yes.

SPEAKER_01 23:58

I don't know how many MDs they actually have with the condition that they've treated. I wonder if any at this point.

SPEAKER_02 24:08

You know, they're I'm also more than happy to be in their studies, whatever the study involves, because anything that can advance medical science is fine with me.

SPEAKER_01 24:17

And that's part of the intent of the podcast as well, is to make it a conversation, to at least address it in some way and think, could this be what the situation is that this particular patient or person is experiencing? Because when you hear the stories, not only are some of them so so painful because they can't get to a proper diagnosis, and the majority of us that are participating in the Facebook group pages see it so often it's frustrating to think that a cardiologist who sees it every bit as often can't accept it or see that this is really a condition that causes, you know, causes problems. And they don't get better over time. They only deteriorate, correct. And I'm thrilled to have a doctor on as well because you look at it from a different perspective. And if you see it from the perspective of the patient and can share it with your constituents and the other doctors, maybe that will get a little bit more attention.

SPEAKER_02 25:23

That was part of my hope. I recently discussed this with my own primary care doctor who also had not heard of myocardial bridges, but may but educated himself about this. And I said, please put the word out to everybody you know that this is a true cause of chest pain, exertional chest pain. It needs to be taken seriously and it needs to be evaluated with more testing than what they can do here in town. This is a condition meant for tertiary medical centers.

SPEAKER_01 25:51

Yeah. Well, thank you again so much for your your contribution. I I really appreciate it. And I am looking forward to the continuation of your story that hopefully you'll you'll share with us. I will put it up on the website for people to easily simply see what's happening with you know Dr. Cunningham as you continue along your journey.

SPEAKER_02 26:12

I will definitely let people know. I I believe in it, especially in a situation like this, my I'm very willing to share any even personal medical information if it can help other people. If I can help any other one person, I will be happy.

SPEAKER_01 26:28

Thank you so much. And I and I agree, I think we all threw a little bit of hip out the window when we started this conversation and you know, the podcast and certainly the Facebook page. And it's just in the interest of those who haven't had the good fortune. And and I say that from my perspective, you're not quite there yet until you get to Stanford. But the good fortune of the surgery and the recognition that it really does improve the symptoms. They they pretty much have been gone for me for a year now.

SPEAKER_02 27:01

Good. So I'm so happy. I was so thrilled when you said you had taken this long bike ride and you were asymptomatic. And it just I thought, oh, that I I hope that is me. I hope I can hike again, hope I can go snowshoeing.

SPEAKER_01 27:14

With that attitude, you absolutely will.

SPEAKER_02 27:16

I hope so.

SPEAKER_01 27:18

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