Episode 34: Hereditary Heart Disease and a Cross Continent Cardiac Cure. Mary McDonalds Journey to Greece.

SPEAKER_01 0:00

I'm a pilot. I became a pilot about seven years ago. And so on this one particular occasion, I realized when I got up in the air that my radios weren't working properly. My heart had been pounding harder and harder as I was getting closer and closer to my home airport. Now I'm starting to panic. And all of a sudden, my heart is racing, my legs are shaking, and the pain in my chest was so debilitating that my vision started to get blurry. And I really felt like I was going to crash. I just didn't think I was going to recover.

SPEAKER_00 1:06

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. My guess this episode is not your typical 60-something. Not only is she an active and engaged individual, but she hails from a family of six siblings, has two children, and is a private pilot as well. She's also a self-proclaimed terrible patient, as you'll hear from her explanation of following doctors' orders in the conversation. Where there is familiarity is in the story we've all heard so many times before. The misdiagnosis, the frustration, the concern, the fear, even the depression that can settle in on the most positive amongst us. She also holds the distinction of being one of the first American patients to visit Dr. Cafetis at his new home hospital, IDEA Hospital, increased. More on that later. This is one incredible woman with a spirit of optimism and positivity that most certainly got her through some of those darkest moments on the way to a resolution for her heart concerns. I'm really anxious for you all to hear her story, so let's just get on with it. Mary McDonald, welcome to Imperfect Heart.

SPEAKER_01 2:36

Thank you. Thank you, Jeff. I'm happy to be here.

SPEAKER_00 2:39

As with all our patient guests, yours is a bit of a unique situation. And what led you to the realization that something was wrong? When did you first recognize this isn't normal?

SPEAKER_01 2:52

Well, I'm going to back up a little bit. I have a family history of heart disease. Both my parents had heart disease. I have I'm the youngest of seven siblings, and all but one of my siblings have heart problems to some degree. I think three of them have high blood pressure, high cholesterol, and then three of them have had surgeries. My sisters had two heart attacks. So it's in the family. So I knew that I had a problem back in my 30s when I had uncontrollable high blood pressure and uncontrollable high cholesterol. Now, mind you, every single one of my siblings has the same frame I have. We're all small in shape, work out, a lot of runners in my family. So there's no reason for us to have heart disease except genetics. So I had that. I got the genetics of my mom and dad. And I was put on high blood pressure medication when I was in my 30s, and I didn't take my high blood pressure medication. Never took it for many years, 20 years. I didn't take it. I thought there's no way. I don't drink, I don't smoke, I run every day, I work out, I eat healthy, you know, except my McDonald's ice cream cone that I've been eating for 30 years. But I don't need medication. So I didn't do it because I didn't have any symptoms. So why would I take it? And it wasn't explained to me the importance of taking high blood pressure medication if you have severe high blood pressure. And when I say high blood pressure, my blood pressure would run from 140 to 180 over 80. And that was standard. I don't ever remember going to the doctor's office from the time I was in my late 30s and having a normal read. I should have been taking my medication. So if you have high blood pressure out there, take your medication. Then what happened was about eight years ago, I had a major foot surgery and they couldn't get my blood pressure under control. They did everything. They gave me IV medication and it just wasn't stabilizing. They couldn't take me off the medication and maintain it proper blood pressure. So they kept me overnight. They did some tests. I don't really know what they did. I wasn't really paying attention. I just wanted to go home and start the healing process so I could run again. And the surgeon came in and he said, I've contacted your primary care doctor, and you had better take this high blood pressure seriously. You are going to have a heart attack and/or a stroke. So you need to be on your blood pressure medication. So for eight years, I've been loyal with my Lysinopl and taking it, but it didn't do anything. It didn't really help. My blood pressure really didn't go down. I still had the same high blood pressure problem. Five years ago was the turning point for me. And that was when I became symptomatic. I live at altitude of 5,200 in Lake Arrowhead. So at that time, I was living full-time at altitude of 5,200. So my body was acclimated. And what happened was I was going up the stairs. We had 43 stairs from our front door to our garage. I have four dogs, of which I took to the dog park every single day. So I'd go up the stairs diligently every day, faithfully, no problem. All of a sudden, I go up the stairs with the dogs and I'm carrying something. So the first few times it happened, I was holding something. So it was with carrying weight. And midway up the stairs, there's a landing, and I dropped what I was holding, and I just put my hand to my chest and I just couldn't breathe. I just had a shortness of breath that was so severe that I was really scared. Well, this went on and became more frequent. First, it was every two, three weeks, then it was every week, then, and this is over the course of a couple of years, it became every single day. Didn't have to carry anything, didn't have to go up the full flight of stairs for it to happen. And it just became more of a problem. Knowing that I had this heart disease in my family, I was sure it was something related to that. So I asked my doctor for a referral, and I was referred to a cardiologist who put me on like three different medications, changed my blood pressure medication, put me on a statin. I had side effects. And so I continued to go with the cardiologists, and my blood pressure still stayed elevated, but he kept saying, there's just no reason for this. They would do an EKG every time I'd go in, and there's no reason. You're very, very healthy. They did blood work, they did all the simple tests that you can do. I don't know if they didn't take me seriously or I just appeared like I shouldn't have a problem. So it just went on. And I just lived with it and thought I was gonna have to live with it. So what happened that really turned everything kind of upside down was I started to have some really severe pain and discomfort and angina that was, I thought I was having a heart attack after I had gone to a family reunion in Colorado. We did a tremendous amount of hiking, and that was when I was at a much higher elevation. We got up to about 8,000 at that time, and I just couldn't do the hikes. I just couldn't do them. I was in pain every day. I felt so bad. This was a week-long trip. Every day was a big hike, and it was something we looked forward to for so long. So I told my husband, just, you know, go ahead. I'm fine. I'll just do my running down here at mile high and I'll walk. And that was fine. I didn't have problems when I ran initially. So I came home and for about four or five, six days, I couldn't walk across the floor. And this at that time, we came home to our Luguna Beach property. So we're at sea level. We're not even at 5200. I couldn't walk across without pain. I was so incredibly short of breath, it was scary. And my husband kept saying, I'm gonna take you to the hospital, I'm gonna take you to the hospital. And we called 911. I said, no, no, no, no, I'm not going to the hospital. I just knew I was fine. And so eventually I went to the hospital and they did a blood test which showed a slightly, this is after like six days, I had a slightly elevated, say the word troponin, troponin, correct? Yes, level. And so they couldn't really identify what if I had or had not had a heart attack. But they knew that my they did a lot of tests and said my heart was not damaged. They did a echocardiogram and they said, You have everything's good except, and this is the hospitalist that told me this. He's not a cardiologist. He said, You have a myocardial bridge. Have you ever heard of that? At this point, I had already discovered Barry Mers at Cedars. Because my condition had gotten so bad, I decided to seek out a specialist. So I sought out Dr. Barry Mers at Cedar Cyanide. She's the head of the Barbara Streisand cardiology group for women. And she's very well known. She's, I mean, her CV is unbelievable. And I knew she would take care of me. She did an angiogram, thinking she was gonna, there was gonna be a blockage and she was gonna send me right into surgery or they're gonna do it right there. And it wasn't. And I came out and she said, I have good news and bad news. The good news is you don't have a blockage. The bad news is you have a myocardial bridge. And I said, Well, you know, what is that? And she explained it to me. And then she said, the way that it's treated is with medication for the first six to 12 months. So we're gonna start you on a very aggressive treatment. We're gonna try new meds. If it doesn't work, we're gonna try different meds and we're gonna go through the process.

SPEAKER_00 10:37

And I'm actually smiling here because we know how much you like taking meds. Oh, your symptoms.

SPEAKER_01 10:44

Yes. Absolutely, absolutely. Well, also during these tests, I was told, you know, during the tests when I went into the ER, during the tests when I would go to my cardiologist, I hopped around from a few cardiologists because I I also, like a lot of the people on the podcast and people on the Facebook group, I also had a cardiologist that said that I needed a referral to psychiatry. And my husband was with me at that time. He didn't go to all the appointments with me, and he just couldn't believe it. He was just flabbergasted. So was I. And I was hurt and I left and I cried because it was real and I knew it was real. So during the all the different angiogram, echocardiograms, different tests they ran, blood tests, all those things, they it was determined that I had two valves that had moderate regurgitation. So from that point forward, it didn't matter that the hospitalist told me I had a myocardial bridge, it didn't matter that Dr. Barry Murz, one of the best cardiologists in the world, told me I had a myocardial bridge. I was a cardiologist in my head and I knew it was from the moderate heart valve regurgitation. Little did I know that I should have listened to them because it had nothing, my pain had nothing to do with that, because a moderate heart valve regurgitation is really nothing. And it does not cause symptoms. There's enough literature out there to prove that. And they said, you know, this this is very common, this can be treated with medication, you'll be fine. So I thought, no, what I'm feeling isn't fine. So it's got to be more serious than a myocardial bridge. So that's why I was convinced it was a heartbow.

SPEAKER_00 12:26

And timing-wise, we're looking at probably what summer of last year?

SPEAKER_01 12:30

It was a year and two months ago.

SPEAKER_00 12:32

Okay.

SPEAKER_01 12:32

That I went to Colorado. Yes. And so I'm on all these new medications. I'm trying new ones. At this point, I've matured. I'm in my late 50s at that point, and thought I better take these medications. If it's possible that these eight medications will relieve my symptoms, by all means, I'll take anything. I just wanted them to go away. Also, I started looking up myocardio bridge, and I didn't like what it said. So I shut the computer and stopped researching myocardio bridge, to be honest. I didn't want to read any more about what it was because I did not, I was never going to have open heart surgery in my head. So I'm going to try every medication. I followed Dr. Barry Mers was amazing. She was, she was very attentive. Her staff was amazing, all the nurses, everybody. I have no complaints. However, I was put on for six months a 0.4 patch.

SPEAKER_00 13:26

Nitroglycerin.

SPEAKER_01 13:27

Nitroglycerin patch, yes. And I was to wear that every day when I worked out, and I could wear it up to eight hours and no more than 12 hours, or I'd get a headache. And it didn't help, but I continued it because I thought it's got to help. I mean, maybe it's helping, and I just didn't realize it's, you know, not helping. You know, you start playing these games with yourself because you're so desperate to feel better. And so I continued this roller coaster of going back to Cedar Sinai every two months for new medications and new reports and really no additional tests, knowing that she was waiting this out. They don't do the surgery, they're at Cedars, and she was going to have to refer me. And I knew that. So then I thought, okay, probably time I do my research. And I started the research, and that's when I found you. And I started listening to every podcast. I just was looking so forward to my daily run. And I'd put on the podcast. And if there was one I really liked, which there were all of them I liked, but maybe they pertained to me, then I'd listen to them again on the next day's run. And it was really disappointing when I got through all the podcasts and I'd be like looking and waiting for the next one to drop. But so this was going on, and I thought, okay, I need to really research this myocardio bridge. So I really looked into it. I hadn't joined the Facebook group yet. Believe it or not, I've never been on Facebook. So the Facebook group was my first when I did finally join, that was my introduction to Facebook at 61. So I just kept doing the meds, I kept doing my research. I really kind of honed in on if I have to do anything, it's going to be at Stanford. I was convinced Stanford was where it was going to be because there weren't any options, to my knowledge, in Southern California. So I had it in my mind I was going to go to Stanford. I just needed to do a little bit more research. Then I started listening to the podcasts over. And I listened to Dr. Boyd's podcast again and again. I listened to the radiologists from Stanford podcast again and again. Thought, okay, maybe should I do robotic? So I listened to Dr. Balkey and Dr. Guy. And I was really getting all my information that I needed to make the right decision. And then January 31st, I was in a pretty bad head-on collision. I had to go to an orthopedic surgeon. And when I was at the orthopedic surgeon's office, he walked in and he said, When he first looked at me and he put the x-ray, they had already done the x-rays before I he walked in and he put the x-ray up and he looked at me and he said, Well, your wrists aren't broken, but have you ever been looked at for Marfan syndrome? I knew exactly what Marfan syndrome was because my son went through all kinds of evaluations at six foot eight and he has a lot of the characteristics. And I said, No, are you serious? I'm only five foot six inches tall. And he said, No, no, no. He said, Do you have and he asked me these certain questions and he said, Do you have any heart problems? And I said, Well, I believe I have heart valve issues, but I'm not sure. And he said, Okay. And he said, Because your hand x-ray is an indicator of Marfan syndrome, I think you should be referred over to a specialist. So he referred me over to Dr. Liang at Hoague, which is right down the street from where I live. So that was perfect. So I went home and I researched Dr. Liang. And guess what? He's also a doctor at Stanford, and he's a cardiologist.

SPEAKER_00 16:57

What are we?

SPEAKER_01 16:59

It was it was Kisbet. It was amazing. So I'm like, hallelujah. I know I don't have Marfan syndrome, but since I was referred, I might as well call and get in there and say I'm here to be evaluated for Marfan syndrome. Then as soon as I'm right in front of him, I can talk to him about getting a referral to Stanford. So I made an appointment and he came into the office and he looked at me and he said, Why did you think you had Marfan syndrome? And I said, Because of a hand x-ray. And he said, Okay, you don't have Marfan syndrome. And I said, I know, but I wanted to come in anyway because you are cardiologist and you work at Stanford. And he goes, Okay, wait a minute. So I've got good news and bad news. You don't have Marfan, but you do have myocardio bridge. Is that why you're in here? And I said, Well, you know, I did want to find out about the Marfan, but yes. And he said, Okay. And then I sat and talked to him for 45 minutes, told him all about what had been going on, all the treatment, all the medications. He already had everything. It's kind of amazing how these institutions can, and it with a click of a mouse, they can get all my records from Cedar Sinai and from Hogue and from Mission Hospital where I went to the emergency room. And so he had everything. So he knew I had been seen by Dr. Barry Merce, and he knew Dr. Barry Merce.

SPEAKER_00 18:18

There's an another side to that story, too, because so many of the doctors now we know they've got access to that information, but how many actually take the time to look at it? Exactly. You know, compliments to him because he actually looked at your entire history.

SPEAKER_01 18:34

Oh my gosh. Well, and I he did because it took him about 30, 40 minutes to come in. And I know he was reviewing my charts. I know he was and looking at my images. He was amazing. So I said, Oh my gosh, I'm thrilled if you could give me a referral. And he said, Yeah, you know it's the best for myocardial bridge. And he said, You know, your myocardial bridge is very unique. Why is that? I hadn't heard this before. And he said, It's torturous. And I said, Well, I know what tortuous is, so kind of explain. And he said, Like, we can't see it that clearly. It goes deep into your heart and it appears to have some twists in it. I said, Oh, okay. And he said, that could cause a more severe symptoms. And the fact that you've been on the medical route for a year, you're essentially a candidate, but you need to determine if that's what you want. It's open heart surgery. I said, okay, let me go home and let me talk to my husband. He wasn't with me. Let me talk to my husband. And he said, Why don't you come back in two weeks and we'll discuss it further and then we'll get the ball rolling. I went home, talked to my husband. We did our research. He listened to probably six of your podcasts because I needed to educate him a little bit more. And then he encouraged me to join the Facebook group, which I did. And there's so much information on that Facebook group. So I spent that two weeks. I'm retired. So I spent those two weeks doing my homework and researching. The more I listened to Dr. Boyd's podcast and all the other podcasts, I thought, hmm, if I'm gonna pick a surgeon to do this out of all the surgeons you've had on your podcast, and then doing homework on surgeons that aren't on your podcast, I really, really liked Dr. Cofittis. So I had it in my head that I wanted to find out more about Dr. Cofittis. And he makes himself so available for consults that it was something I couldn't pass up. Two weeks later, I walk into Dr. Lang's office. And knowing that most patients have a really difficult time getting into Stanford, that was in the back of my mind. And I didn't want to wait a year. And also knowing that Dr. Cofittis has more availability, and I really, really liked what he had to say. And I love his background and his CV. He is a very, very accomplished cardiologist. So I brought his name up to Dr. Liang, my cardiologist. And he goes, I know Dr. Cofittis. I go, you do not. Come on. And he goes, No, I know him. I referred a patient to him. I said, What do you mean? Are you kidding? He said, No, he said, I had a European patient with Marfan syndrome with heart valve, needed their two heart valves replaced, and they could not get it for under a million dollars here in the United States. So I referred him to Dr. Cofittis. They met because Dr. Cofittis did some training at Stanford for a period of time. So I think it was the combination of those, that's where they originally met, and then they stayed in contact. And he's actually referred two patients to Dr. Copitis. So when I told him Dr. Copittis, and you know, I listened to his podcast and I did a lot of research on him, he said, you know what, this is this is your decision. This is, you know, you have the ability to go with who you're comfortable with. And I am more than happy to, you know, continue pushing for you to get up to Stanford. But I understand there's a there's a weight, and but you have my support. So we discussed how it would work if I went overseas for or went to Greece for this. We discussed it a little bit, and I said, I'm gonna set up an appointment with him, and when I make my decision, I'll let you know. And he assured me that I had his full support. And so that's what I did. I called Dr. Kofitis and I set up the appointment and we took it from there.

SPEAKER_00 22:26

How did you find the Greece experience from hospitalization to recovery? Because you have to stay two weeks, if I'm not mistaken, and just the entire process by comparison to what you know at the United States?

SPEAKER_01 22:41

Well, first of all, let me back up a bit. After my first consultation with Dr. Covetis, then Mark and I, my husband and I talked, and we both said, this is the person we want to go with. It was about three or four days before we called Dr. Covitis and said, we're gonna go we're gonna come to Greece. And I was set for surgery three weeks later. And during that time, the contact, the availability that Dr. Covitis provided me is something I've never experienced. So there is a hospitality that the Greeks have that I'm not very familiar with here. It's a little bit faster pace here, kind of get in, get out. Not with a cardiologist. I like I said, I had great cardiologists, but he was so personable and so available. I would send him an email, and even though it's a 12-hour difference, he would always respond. So attentive from day one. He immediately after the decision was made, probably I'd say, you know, a few days later, I got my initial letter from Gregory. Gregory is the international patient coordinator with Dr. Covitis at the hospital I went to, which is Hygia, H-Y-G-I-A Hospital in Greece. And it was thorough, step by step, what was going to happen, what I needed to do, and what to expect when I arrived. Along with that were a list of three hotels that I could book for my husband, because my husband was going to go, which were right next to the hospital. And maybe after a week when I was discharged, I could go down to where the historic area of Greece is. So just accommodating beyond words. When you're going through something like this, not only are you nervous because you're going to be having surgery, but you're still in pain, you have so many questions, but it just seemed like the questions were answered before they were questions. It was an incredible experience. Fly over to Greece, and just like they said, there was someone waiting there at the airport with my name on the card and lifting it up and drove me straight to the hospital, drove Mark and I straight to the hospital. And that is where I met some of the staff that was going to be doing the procedure. Procedure wasn't going to be for two more days. So they were going to do all the pre-op, but not that day. That was a rest day. That was a sightseeing day, but they wanted to meet me immediately. So they met me, they gave me a tour around, and I saw Dr. Covitis and Dr. Patakos, who is his right hand, who did 15 years of training here in the United States at three different amazing institutions. I met all of them. And then the next day at three in the afternoon, I was admitted. And that was when they give you all the iodine and they're doing all the prep the night before, the shaving and everything, and just getting you comfortable in your private suite, which was incredible. So going back to how does this compare to the United States? I've never had a room that looked like a hotel room. Yes, I could tell it was a hospital room, but it was, it was just very private, very nice, very hotel-like. And majority of the staff spoke English good enough to communicate with me. And they were just amazing. I put my Netflix into the TV and I started watching my movies. And I was, you know, getting excited for the next chapter in my life.

SPEAKER_00 26:20

How did how would you evaluate the recovery? Because obviously the surgery, none of us are aware to any great degree. But when you came out of surgery, how was the the next couple of days, you know, the process, the ICU, and then the dismissal? And if I'm not mistaken, you were a sternotomy patient. You didn't have them anymore invasive.

SPEAKER_01 26:41

Yeah, let me address that part first, the strenotomy. Backing up in my conversations with Dr. Copittis, we talked a lot and he had all my images, and this is before I left to go there. And I said, Dr. Covittis, you're great from my understanding. You're a very good robotic surgery, surgeon. Is that an option for me? He said, in your case, unfortunately, it's not an option. And it was because of the torturous LAD. And he said, but the reality is, I'll never promise a patient that I'm going to definitively do robotic surgery. It may appear that that's what we're going to do and we will start doing that. But if there's any question, once I go in robotically, we back out and we we will do a stronotomy, whether it's a you know minimally invasive one or a full strenotomy, which is what I had. So I was prepared for the full strenotomy. And I had sent Dr. Cofittis my DEXA scans that I'd had, one six months earlier, one three years earlier, all of which said I had typical osteopenia, which is normal for somebody my age.

SPEAKER_00 27:44

And for the benefit of those who don't know, that's that's a bone density situation. As women age, it tends to become a little bit more brittle.

SPEAKER_01 27:54

Absolutely. And especially I'm, you know, I'm I'm very slim and a runner, and you know, it's just a little bit more common. So that was not a problem, he said, for doing the full strenotomy. And so then when I came out of surgery, I had the best, and I bet everyone says this because you like you fall in love with your ICU nurse because they're so compassionate. She was amazing, amazing. I mean, I just wanted to, when I when I left two weeks later, I wanted to just yell in the hospital how great she was because she made that opening up my eyes experience just so much better. She was there for me. She was just whatever I needed. She was, she was like, it was like having my sister there, you know, it's like just imagine who would you want in surgery? If you can't have your mom, who would you want? I'd want my sister. And I felt like I had my sister there. She was treating me just like family. And it was an incredible experience. I've come out of quite a few surgeries. I've never felt that before. And she's just so good at her job. So then they did the brutal transfer up to the room. Oh, that's so painful. And I was on pain meds, and you know, you just pain meds can just do so much. I mean, it's a painful time. And I also had some complications in surgery that we didn't anticipate. So once Dr. Kofitis went in, Dr. Kofitis and his staff of six went in, they discovered very unfortunately that I had full-blown osteoporosis. And my sternum and ribs were like Swiss cheese, very frail, very brittle, dangerously brittle, they said. And it concerned them a lot. So they put, because of my small frame, they put extra wires, really small wires, to just keep it, you know, really tight. And boy, did I get an education on the pillow. The pillow.

SPEAKER_00 29:58

So we're talking about the heart pillow that you hold against your chest to breathe.

SPEAKER_01 30:02

Yes. They did not have the infamous heart pillow, but they had a pillow nonetheless, and I loved it. And I also had developed a mild to moderate pneumothorax. So they put the, of course, they have the chest tubes in. Pneumothorax is the air that is in the lungs between the lungs and the chest cavity, I believe, but it's excess air, and they need to keep a very close eye on that. And so they did, and because of that, I had to keep my chest tubes in for an extra day. So I had them in for three and a half days, which is longer than I wanted. So after surgery, after the beautiful ICU nurse experience, they wheeled me up to my private room. And I just thought I was going to die from back pain. I didn't feel the chest pain as much as I felt the back pain at that point. And I was just begging for more payments. And that first day, they give you pretty much whatever you want to make you comfortable. But then I had numerous doctors, the cardiologists on the floor, I had Dr. Patos, I had Dr. Kofitis all come in and they just said, I know you're under heavy, you know, sedation still, but we have to tell you a few things. You can't move, you can't use your arms to lift, you can't use your arms to hold the side rails, you can't do anything because they were really concerned about my frail sternum. And I was reminded of that, it seemed like every hour on the hour because they were watching me so closely. And so I just had nurses in there all the time. What do you need? Do you need water? Do you need giving me water through a cup? Just doing anything and everything because the the surgeons told them she can't move. She you got to be very careful. And they were concerned about me being on heavy sedation or heavy, you know, pain meds and not feeling enough. And so here I'm progressing, I'm doing better, I'm kind of getting the swing of it. And yes, it's painful, but I expected the pain. And then we go into day two. I'm still in a lot of pain. I'm begging for the highest dose of pain meds that they could possibly give me, which I believe was morphine, but they don't put you on a drip. So in Greece, you're not on a drip, you're not on a pump. They put it ID, but you can't pump it in like surgery here in the United States. And they have to give it to you, and you have to need it, and you have to request it. So I didn't like that. That's different from what I was used to. I said, I really need, I need more meds. I'm I'm in so much pain. So Dr. Patakos came. Now at this point, it had been two full days. He came in and he sat on the bed and he said, Okay, you're awake enough now. We're gonna create your pain management plan together. And this is how we do it in Greece. I said, Really? I said, it's not the same protocol for everybody. He said, Not in Greece. I said, Okay, explain. And I like everything explained. I will adhere, I'll comply, I'll be the best student if I understand. So he said, When you have this open heart surgery, you're at a high risk of pneumonia. You're at high risk of damaging the hard work that we did by the strenotomy. You're at high risk of not feeling the pain if we put you on high pain meds. So we want you to feel the pain, but we want you to have comfort to a degree. But you need to feel it. You need to know so that you don't do something that's gonna affect or hurt or harm what we've done. You also need to feel feel it so that you will continue to recover. Recovery is coughing. You need to cough. You when you've got that phlegm in your chest, you need to cough. And you need to keep the airways open and keep your lungs working, especially because I had a mild pneumothorax. And he said, so let's come up with our plan. Here are the three different types of medication. There's one, there's two, there's three. One is a rotation of Tylenol and ibuprofen. Number two is basically Tylenol with codeine, and number three is morphine. So we will put you on a regimen of the Tylenol and ibuprofen after day two, unless you need more. I said, okay. I can't imagine not having more, but okay. And he said, Do you understand why you need to do this? And I said, Yeah, I do. And he said, We really, we really want you to recover well. And we're that's why we keep you here for seven days, because we monitor your pain management. And if you need it, by all means, we are not gonna hold back. We will never hold back. But everybody has a different threshold for pain. And to have a standard protocol for everybody isn't serving them well. And I just appreciated that so much. And so as he was leaving, I said, Can I have number two now? And so it was kind of funny. And but I took to heart what he said. And by the middle of day three, I was off everything. I was only on Tylenol and ibuprofen. And he gave me, I think it must have been day, it was the end of day three when they took the tubes out. And he said, you know, sometimes when we're taking all these, you know, taking these tubes out, it can hurt. Would you like the number two? I said, Oh, I've been doing so good on number one, but okay, I'll take the number two. And he did that. And then 10 minutes later, the tubes came out. And I said, I don't think that, I don't think that would have hurt that much. I think there's a they think it's a big deal, the tubes coming out. I don't think it hurt at all. And it wasn't because I was on payment. So that was that's a that's something I would tell people that are having the surgery. Don't sweat getting anything taken out. It's wonderful getting it taken out. It's freedom.

SPEAKER_00 36:15

There are a couple of points there that that I want to readdress for everybody because I try to make the emphasis. You're talking about the lungs and the significance of breathing properly. But the other significant, significant part is using that spirometer. You've got to really use the spirometer. And some people want to do it for a day and it's too hard, and I don't want to bother. Well, if you don't, your lung capacity could change. You could develop on pneumonia. And it's significantly important, as difficult as it is, and and uh pain in the butt that it is, you must do it.

SPEAKER_01 36:47

Oh, yes. Well, that that's funny you say that. So that not a problem here. I'm competitive. I was competing against myself. I I always had that in my hand. I was playing with it, I was determined because it's really weird the first day when you have that and you can't do anything. The balls don't even move. It's like nothing. They don't move at all. And you just can't imagine having those balls go all the way to the top. And I was just thinking, no, no, no, no, no. When that therapist comes in tomorrow, I'm gonna show him something. So he had come in and I couldn't do it. And I said, When you come back tomorrow, you're gonna see. He's like, All right, all right. And I said, and if I can get one of those balls up, can you sneak down to the cafeteria and get me a Diet Coke? Because they won't let me have it here. And he said, I'll see what I can do. But yeah, I've got to get a ball up there. So that means you got to practice. So this is like day three and four, probably day three. I got one and a half balls up by the beginning of day four. All of them were up every single time. And I'm like, you know what? You need to go on to another patient because you're wasting your time here. And he'd bring me a diet coke every time he came in. I said, Did you get permission? He goes, I kind of had to. So he talked to Dr. Kofettis. And then my husband snuck in french fries. And Dr. Kofettis would come in and he says, This is a regular old McDonald's in here, isn't it?

SPEAKER_00 38:13

Were the French fries from McDonald's?

SPEAKER_01 38:15

No, they're from the cafe downstairs. Oh, okay.

SPEAKER_00 38:17

Okay. Were they as good in Greece as they are in the United States?

SPEAKER_01 38:22

They're very good. They're very good. The food at the food at this cafeteria downstairs. Oh my gosh, you wouldn't believe it. It was gourmet Greek food. It's not like hospital food. It was the best. But I'm diabetic. So they had me on a diabetic diet. So I had to cheat. I had to, I had to get some allies to get me food from the cafeteria. I can't survive on it on that diabetic food. Oh my goodness. So I missed my McDonald's ice cream, I have to say, I didn't get that. But Dr. Patacos allowed me to sneak in. I got some things.

SPEAKER_00 38:55

One thing we didn't say is the actual date of your surgery. And I think it's interesting that we've gone this far in without addressing what it was, because so people are probably listening to you and going, wow, she probably had her surgery maybe a year, year and a half ago. Your surgery, literally, the day that we're recording this is July 12th, was April 12th. So you are just now out of three months. Literally out of spiritual precaution.

SPEAKER_01 39:20

Three months today.

SPEAKER_00 39:22

Congratulations.

SPEAKER_01 39:23

It doesn't, I I can't even believe it because I have felt like I can do everything for the past month. I haven't because I was told not to. I started running at six weeks post-op. And well, I shouldn't say run. I'm a jogger. I'm a light jogger. 12 minute miles is what I that's my standard. And I can run now two miles without stopping and maybe a total of three or four miles and one outing, you know, where I'm walking and then I'm running and walking. So recovery for me was another competition against myself. It's really hard for me to sit down and be still anyway. So the only thing that's gonna get me down is if I'm literally sick or you know, I have some ailment. It's it's not gonna be the doctor telling me you have to rest.

SPEAKER_00 40:10

Right.

SPEAKER_01 40:11

I don't rest very well. As a matter of fact, I they I begged for them to let me discharge me early. So they discharged me a day early. And on that day, I went down to the famous Greek Olympic Stadium. Oh my gosh, where the gargoyles are. And oh, it was amazing. And I walked four miles on day five.

SPEAKER_00 40:29

You're in a city known for its Mediterranean diet, which is the healthiest diet of all. So you're in good shape there. Yes. And I think as people are listening to just your positivity and your upbeat nature, I think that has so much to do with it. The fact that you're just going to get through this. It's part of the process. And you will do what you need to do. And for those people who aren't in this position, who maybe are really scared about that next step or really afraid of the sternotomy or the surgery in general, it's really about an attitude. And you can hear it from the first time we spoke. I said, this is why she's doing so well so early on, because you were going to, period.

SPEAKER_01 41:13

Yes. Oh yeah. There's the limitations that I had been experienced progressing over the past five years were so limiting. And I had another incident. If I could back up, I had another incident that was so scary that happened more than once, but the one incident was really scary. And that was around the same time that I had really realized with going up the stairs that I had a real problem. It wasn't until, you know, this past six months or the past year that I realized what happened. And I was, I'm I'm a pilot. I became a pilot about, I don't know, it was like seven years ago. And my husband and I fly for pilots and paws, and we're animal fanatics. So we spend our weekends transporting animals that need help. And so that was just my motivation for getting my license so that we could both do separate trips and help more animals. And so on this one particular occasion, I was coming back from an animal transport. It wasn't that far, it was a few hours away. And I realized when I got up in the air that my radios weren't working properly. And when I was talking to air traffic control, they would say gargled and unreadable. And it was fine because I wasn't in crowded airspace. So I knew I was relatively safe, but nobody could see me in the air. I couldn't see them, I couldn't hear them, and they couldn't hear me. And you've got to be able to communicate with other planes and with air traffic control and approach. And so very scary. I get into my airspace. I get closer to my airport. Now I'm starting to panic because I'm in an extremely crowded airspace. And it had been building. My heart had been pounding harder and harder as I was getting closer and closer to my home airport. And now I'm wanting to go into what's called pattern. Pattern is like a road, an oval road, 2,000 feet above a runway. So imagine an oval shape, and that's where planes go in and out to when they're doing pattern work. Kind of like an airplane roundabout. They go in there and they come out of there. So I'm not allowed to go into that airplane roundabout unless I have the tower's permission. Well, I couldn't communicate with the tower. So I am starting to panic. And then all of a sudden, this angel in the sky heard me. And it was another airplane. I didn't know where he was or who he was. And he said, I hear you. I'm going to communicate with your tower for you that you're coming in. And I'm like, holy moly, thank you. But he couldn't, he couldn't. I said thank you to him, but I couldn't communicate with anybody else. And then he took off and he was going somewhere else. So I knew the Power knew I was coming in, and all of a sudden my plane took a hit. My airport is an Amazon hub. 20 flights a day. That huge airplane took off. And the wake turbulence off their wing, when that tornado of air comes down and it hits a small plane, it's the number one cause of small aircraft accidents is wake turbulence. It hit me so hard. And I grabbed onto the yoke and I didn't think I was going to survive it. And I was panicking. And all of a sudden, my heart is racing, my legs are shaking, and the pain in my chest was so debilitating that my vision started to get blurry. I really felt like I was going to crash. I just didn't think I was going to recover. And I was just, then the wake turbulence was gone, and I was holding the yoke with one hand and putting my other hand over my heart, just just like, please, just get through this. And what is this pain? Thankfully, I landed safe, taxied over to my hangar. My husband was there. I got out, hysterical, screaming, crying. That was the probably the worst experience of all. So that was another motivation for having this surgery and realizing I can't live this way.

SPEAKER_00 45:10

In time, you didn't realize that you it was a myocardial bridge causing all the symptoms.

SPEAKER_01 45:16

No idea. None whatsoever. I explained that to my cardiologist. I, you know, a year later, I said what happened and said I felt like I had a heart attack. I never went to the hospital, but I really was feeling like I was having a heart attack. Could have been a panic attack, whatever it was, my myocardial bridge absolutely exacerbated those symptoms. That was not just stress or panic. That was symptomatic. I had to do something.

SPEAKER_00 45:42

Today now you're a year out. You've you've three months out from surgery, but you know, a year from significant symptoms. How would you say you feel as you're getting back into normal day-to-day life?

SPEAKER_01 45:54

Well, surprisingly, I can say from the first or second day after surgery, I noticed that I was better. That's how frequent my symptoms were. My symptoms were when I was sitting still watching TV, I would have an I would have severe angina. I would get up to go get a glass of lemonade at night when we're relaxed watching TV, and I would have a severe angina and shortness of breath. It was so common that it made it very obvious right after surgery that I was better. And I I noticed it immediately. And I never, I have never, ever once in three months had an episode of angina. Yes, I've had the shortness of breath. That's normal. It's gonna take time for my lungs to heal perfectly, especially because I did develop the flu after I came home. And that kind of gave me a little setback, but not long. But I just feel this is the other thing that's really weird. I've never suffered from depression in my life. Never, nothing. I'm just upbeat, nothing ever got me down. Look on the bright side. But in the past year, I really had depression. I had depression to the point where I went to a doctor. I I just couldn't control my woe as me. And I just didn't feel right in my head. And it took away some motivation. It it's hard to explain. My doctor said, she said it wasn't clinical depression. She said I had situational depression. And I said, I don't know if I agree with you. I think as long as I have this problem, I'm gonna be depressed. I said, it's not just because it's limiting me, there's something else physical going on that's causing this, and I've never had this before. And so she prescribed medication of which I never took. But instead, I said, I'm gonna beat it. I'm gonna figure out the I'm gonna solve this problem. And sure enough, I have a completely different outlook. I have the outlook I used to have. My husband has his wife back, and everything's it's it's just like the cloud is gone. And I've got all kinds of aspirations and things I want to do and animals I want to transport. And I can't wait to pass my medical to fly again.

SPEAKER_00 48:15

Yeah, quick quick question, just stepping back. Did you do a provocative test? I did not. You did not. Okay, so it was Dr. Cofetis was able to deal with everything off of the CT scan.

SPEAKER_01 48:25

The angiogram, yes. Yeah, I had multiple CTs and I had the angiogram, but it was very obvious in that. He said, I can identify, I know exactly where it is. He said, the problem is you have two complete twists. That's rare. And and he even said after surgery, he cut along the heart to, I mean, all the way up because of the possibility of endothelial dysfunction. So I don't have that. I'm not having to heal from endothelial dysfunction for the next two years. But he said, as soon as he took that LAD out, he said it plumped right up, like a perfect LAD, and he set it on top. And he said, he said, but you know, I do need to let you know that if down the road at any time you do have that sharp pain back, and because I've talked to him since, if that angina comes back, if something happens, you need to call 911 right away. Because since my LAD was so twisted, kind of like a hose, when it's twisted forever, it kind of wants to go back to that kinking position. He said, I don't think that's gonna happen. I just want you to be aware. Don't take your pain lightly. You're not supposed to have heart pain. So if you have heart pain, you go in immediately. I'm like, okay, but I'm not gonna have heart pain.

SPEAKER_00 49:41

Yeah, right. There you go. I'm gonna think it away. It's not gonna happen.

SPEAKER_01 49:43

No, it's not gonna happen.

SPEAKER_00 49:44

You know, we we have a lot of people who are doing what you did with the podcast, they're listening to the episodes, hearing what people are saying. What would you say to somebody who's suffering the consequences and they're they're they're just paralyzed to get anything done about it?

SPEAKER_01 49:57

Oh my gosh. You know, fear and and oh, just that just gave me that you saying that, I have chills. I mean, it's just it's like PTSD. Like I remember so well that feeling that they feel. And just feeling like nobody understood because it's such a condition that people aren't familiar with, your doctors don't understand, your spouse might not understand, your family might not understand. I it took a lot of convincing for my family. They were not supportive at all initially. What I can say is you've lived with your body since birth. You know what is right and what is wrong. You know that if this doesn't feel right, it's not in your head, it's in your heart, and it's real. And there's so many of us that have gone through the exact same thing. And it's there's hope. There's hope now. And there's hope because of the podcast, because of the Facebook group, because of the support that is out there. And if I give anything, do what I did. Listen to the podcast. If there's a few podcasts that just that ring true to you, listen to those over and over. They gave me those podcasts, gave me support. And there were, there are a few posts on the Facebook, once I joined Facebook, that I actually screenshotted. And I think I told you I had created a binder of all the surgeons and when I was making my decision on what surgeon to go with or who I wanted to interview with. And in there, I also had screenshots of the Facebook where I felt support from that. And they weren't to me. These weren't messages to me, they were messages, messages to each other. So I'd say fill your head with positivity. Just stay positive and don't let the negativity get you down and continue your fight to do what's right for you and for your body. And whether it's you're gonna go through insurance and be here in the United States or go to Dr. Cofittis or another doctor, you will know when you found the right doctor and you will know when you found the right path and when the timing is right. The timing has to be right. The timing for me was not right three years ago, four years ago. It wasn't right when I first came home from Colorado and went into the hospital. It wasn't right then. The pain of living with it has to be greater than the pain of going through the surgery. And when you're at that point, then you take that step forward and you go through the surgery and you endure the tubes, you endure the back pain, you endure all that recovery. And hopefully you have some of the nurses like I had over at Greece that would sneak me in Diet Coke and rub my feet and come in and tell me stories about their kids. It was amazing. It was really an amazing experience. But I just, you know, I can just say you've got the support here and take advantage of it.

SPEAKER_00 52:48

I don't think you could have said that any better. The pain when the pain of living with it exceeds the pain of the surgery and the process, it's time to get it done. Yep. And that is a uh it's just a wonderful statement. Mary, I can't thank you enough for your time and your conversation. I really appreciate it. I love the posity. I absolutely love the positivity. You're you're you're just simply awesome. And and a pilot, make sure you get that license renewed before I hear about any more flying.

SPEAKER_01 53:19

Yeah, well, I my flight doctor declined me and failed me because of my accident, pain with my wrists, and because of this. I told him what happened. And so he's like, You're not getting a physical today, because I'm not gonna mark down that you failed, but I'm just telling you, if you are coming in for a physical, you're failing. So you need to get this taken care of. So he knows I had surgery and I'm waiting, I'm waiting another three months, and then I'm gonna go back in and hopefully I'll pass, which I think I will.

SPEAKER_00 53:44

Oh, I'm sure you will, and I can't wait to hear it. Your attitude, your positivity, they really play heavily on both your decision to make the decision to go and and also your recovery. And I'm so glad that you're able to do what you've been doing, you're getting back on track, and I can't wait to hear the story of your next solo flight.

SPEAKER_01 54:02

So thank you. And my marathon. I'm doing a marathon next June in San Diego.

SPEAKER_00 54:08

Well, from the very bottom of my imperfect heart, thank you so much.

SPEAKER_01 54:12

You're welcome. Thank you. Thank you for all the support and the encouragement, which helped me to get to where I am today.

SPEAKER_00 54:19

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.