Mike Sylvester, Five-Time Heart Surgery Survivor and Stroke Survivor, Shares His Story

Show Notes

Mike Sylvester is a five-time heart surgery survivor, a stroke survivor, and an advocate who shares his story to help others live healthier lives. Listen to his conversation with Alliance for Aging Research Vice President of Health Education and Advocacy Lindsay Clarke and learn more about Year Without a Stroke at http://yearwithoutastroke.org.

Episode Transcript

Lindsay Clarke:

Hi, everyone. Welcome to This is Growing Old. I’m Lindsay Clarke, Vice President of Health Programs and Advocacy at the Alliance for Aging Research. I’m really happy to be here hosting today’s episode. Today, I’ll be interviewing an inspiring patient advocate, Mike Sylvester. Mike is a five-time heart surgery survivor, a stroke survivor, a member of the Alliance’s Talk Nerdy to Me Council, a patient advocate, and the latest storyteller in the Alliance’s Celebrating a Year Without a Stroke campaign. Mike, we’re so thrilled to have you on to talk about your heart disease and stroke journey. You’re really such an inspiration and have learned so many valuable lessons and we’re grateful that you’re willing to share some of them with our listeners today.

Mike Sylvester:

Thanks, Lindsay. I’m happy to be here.

Lindsay Clarke:

We’re thrilled to have you. I want to start, you’ve had a really scary journey with heart and stroke disease and you’re, as you’ve said yourself, a bit of a miracle. Would you share your story with our listeners?

Mike Sylvester:

Yeah, sure. My story began about five years ago. It was December of 2016. I was watching a hockey game. It was about 10:00 or 11:00 at night. It had just finished up and I noticed I had some real minor chest pain right in the middle of my chest. It was barely noticeable and I had no other symptoms. My wife was working during the night and my stepson had gone to sleep, he had to work the next day, so it was just me and I thought, should I just go to bed? It’s probably nothing. I, of course, got on the Internet, like everybody does, and started doing web searches for chest pain. It all kept coming back, “heart attack symptoms, possible heart attack symptoms.” I had no other issues, so I thought, “It’s probably nothing.” I’d had some minor stomach issues in the past, so I just almost went to sleep or went to bed, which would have been bad.

Mike Sylvester:

I work at the post office here in Duluth, Minnesota, and I had to be in to work at 6:00 AM, so I thought, “Well, it’s going to be a hassle to go into the emergency room,” but I thought, “I’d suppose I’d better,” and I got in my truck and drove there. It took about 10, 15 minutes. I walked in the ER and told them, “It’s probably nothing, but I have some very minor chest pain,” and they did some tests and determined that I was having what they call the “non-ST elevated myocardial infarction,” also known as a heart attack. It was a 20% blockage in an artery in my heart, so it wasn’t a real bad one, but enough to give me some pain.

Mike Sylvester:

They said, “Well, we’re going to put you on blood thinners and in the morning, we’ll put a stent in and you’ll be out of here in no time,” so the next morning they had the stent surgery and I came out of the stent surgery. I, of course, don’t remember any of this, but I was complaining of extreme chest pain and I was sweating profusely and I was nauseous. At first, they were thinking it was maybe the anesthesia wearing off. Well, the cardiologist came in and said, “Something else is going on here. We need to run one more test.” Thankfully, he said the magic words because I needed a CT scan. I was in the midst of very severe aortic dissection. Your aorta is made up of multiple layers and mine pulled apart and tore from my aortic arch all the way down to my intestines. When they saw it on the CT scanner, they scrambled a large surgical team and it was about a 10, 11, 12-hour surgery. I had full open-heart surgery. They had to repair my aorta and I just about died.

Mike Sylvester:

I woke up a month-and-a-half later, just over a month, almost a month-and-a-half later. After the surgery, I had multiple organ failure. My kidneys stopped working. They couldn’t get me off the ventilator. Every time they pulled out the ventilator, my lungs collapsed and this went on and on. I have some very horrific memories about being in the surgical ICU and in and out of consciousness and in pain and not being able to breathe. After about a month, month-and-a-half, I just basically woke up one day and had no idea what had happened and I remember my wife saying, “It tore from here all the way down to here,” and I remember thinking, “If something tore, how am I still alive?” I was strapped to the bed, my legs and arms because I was, of course, confused and trying to get away.

Mike Sylvester:

After a stay in the ICU, I went into the rehab facility and was there for about another month and I had developed atrial fibrillation also following the surgery, so at some point that I was able to go home after about a month and they put me on Warfarin and Amiodarone for the a-fib. I did 36 sessions of cardiac rehab and made an amazing recovery and they were surprised at that time that I was able to recover. I went back to work a couple of months later and after wearing a heart monitor for about two months, my a-fib had disappeared, because they were, of course, worried I would be at risk for a stroke.

Mike Sylvester:

It was about a year after that I had a routine CT scan and they determined that I had additional aortic aneurysms develop in my descending aorta, so they were going to need a series of three more surgeries to correct that and insert some additional aortic endografts, so they did two surgeries to reroute my carotid and subclavian arteries in my neck and then they went through the femoral artery in my right leg and inserted an aortic endograft to stabilize the aneurysm.

Mike Sylvester:

Following that surgery, I had a right-side stroke. They called it at the time a “cerebral vascular accident” and I distinctly remember waking up from the surgery and hearing “accident” and I remember thinking, “Accident? I didn’t have an accident. I came in here for heart surgery.” Then I heard people say, “The neurologist is here,” and he said, “He’s had a stroke and it’s a very severe one.” I remember thinking, “Stroke? I didn’t sign up for this. I came in for heart surgery.”

Mike Sylvester:

I, at that point, thought my life was probably going to be over or changed for the worst permanently because anybody I ever knew who had a stroke, it didn’t turn out very well. They either died or they were severely disabled. My stroke was caused by me being put into circulatory arrest. In order to do the surgery, they put me on the heart bypass machine. They cool down my blood, and then they give you what are called “cardioplegic drugs” to stop your heart, so I was basically in a state of clinical death, and then when they warm my blood up and started my heart up again, a tiny clot formed, probably in one of my legs, and it ended up in my right middle cerebral artery, and I woke up almost completely blind, paralyzed on the left side, both my left leg and left arm, and unable to speak.

Mike Sylvester:

At the time, they thought they weren’t even going to admit me to the rehab facility because there was very little chance I would be able to recover, and we had a prolonged discussion about going into the rehab facility or whether or not I should go to an assisted living or a nursing home. Eventually, they admitted me to the rehab facility and told me right away, “There is a chance you may have little or no recovery,” and I told the doctor at that time, I said, “I honestly believe my willpower is strong enough that I’m going to be able to will myself back to recovery,” and he said, “Well, it doesn’t work that way,” and I told them, “Well, you’re going to find out it will for me.”

Mike Sylvester:

I went in and I walked out a month later a little bit over a month later, the rehab facility, I was doing eight hours of rehab a day. It was very grueling. Get up at 7:00 in the morning, eat breakfast, do eight hours of occupational therapy, physical therapy, and psych therapy. It was completely exhausting. I did eight hours a day seven days a week for a little bit over a month and then I walked out the front door. They agreed to allow me to go home as long as I agreed to three to four more months of intensive outpatient therapy, so I did about three-and-a-half months of outpatient therapy. My wife would drop me off and the same things continued eight hours a day for a couple of more months.

Mike Sylvester:

The progress was really slow at first, but pretty soon, I was able to get out of a wheelchair and use a walker and then use a cane and by the end of my therapy, I was walking and even running on the treadmill. They score you in all the physical therapy sessions and psych therapy and speech therapy through your ability to do daily living tasks and they showed me the scores on my last day of therapy and the physical therapist said that, “Your first day of physical therapy, there’s no way you were going to get out because you are a danger to yourself because you couldn’t even stand,” and on the last day, I was able to run on the treadmill.

Mike Sylvester:

Same thing with speech therapy and psych therapy. I had a lot of different cognitive issues. I had a hard time focusing and concentrating and even thinking, and on the last day, I was doing very complicated word games and word puzzles and was almost back to normal. After about another two months, I went back to work and everybody was amazed that I had had such a recovery. The neurologist said the first time it was probably a one-in-a-million chance that I would be able to recover and go back to work, and after I went back to see him, he said, “Actually, it wasn’t one in a million. It was probably closer to one in 50 million.” A good chunk of the right side of my brain is now basically scar tissue and I was fortunate because none of my involuntary functions were affected, it was just speech and vision and left side, so I was very fortunate.

Mike Sylvester:

Then it was about a year later, a year ago in January or February. We had the worst pandemic our country’s seen in a hundred years and I get a call from the heart and vascular center: “You need to talk with the surgeon tomorrow at noon.” I knew it was on the horizon because I had had some very minor issues with my aorta and he had some things that he had to fix with blood flow, so he said, “You’re going to need another surgery,” so right in the middle of the pandemic, I had to go in. I had to go in by myself because they weren’t allowing visitors. The hospital was on lockdown.

Mike Sylvester:

That was just a little bit over a year ago. That would have been May of 2020 and I had another heart surgery and they didn’t think it would be very complicated, and of course, I was terrified I was going to have a stroke again, because once you have one, you’re at risk to have a second one or a third one, even, so I went in and I had the surgery and I remember waking up. It was a Friday, the surgery. I woke up Friday afternoon and the surgeon was there and he said, “Well, everything went well. Have something to eat and I’ll come back and see you tomorrow morning.”

Mike Sylvester:

Saturday morning comes and he shows up about 10:00 and he said, “Well, everything looks really good.” They had put an epidural into my back so that they could give me a CT scan and they put the contrast dye in while I was asleep and did a CT scan and he said, “Everything looks good. Would you like to go home?” I said, “Didn’t I just have heart surgery yesterday?” and he said, “Ah, you’re good to go. There’s no reason to keep you here any longer,” so I called my wife and said, “Come pick me up,” and I hopped out of bed, got dressed, and walked out the front door again.

Mike Sylvester:

That was one day after heart surgery and I went back to work five days after that. I remember everybody at work saying, “Didn’t you just have heart surgery?” and I was like, “That was so last week. I’m good to go. I’m back.” I had some minor lifting restrictions because they went through my left femoral artery, so I’m out of access points. I’ve had both carotids in my neck, I’ve had full open-heart surgery with the sternotomy, I’ve had atrial arteries and both femoral arteries, I’ve had aortic endografts, and other artificial pieces stuck into my aorta, but I am suffering almost no issues at all.

Mike Sylvester:

I’m on just a couple of blood pressure meds. I’m on Plavix to prevent blood clots and I’m on baby aspirin. I’m on Lipitor to keep my cholesterol down and I’m on Levetiracetam, also known as Keppra, because following my fifth surgery, which I forgot to mention, I had a tonic-clonic seizure in front of a big-box retailer in town and I had passed out and was unconscious. They found me in my postal vehicle and I was diagnosed with what’s called “localized epilepsy” that was caused by the stroke. People who have strokes are at risk for epilepsy and other things, so I had a full seizure. But the good news is that I have not had another one since, so I’m seizure-free for almost two years and stroke-free now for almost three years and I’m back at work and working at the post office. There’s been a lot of 10, 11, 12-hour days, and it can get cold in Duluth here, 40, 50 below. Today, it’s about 85.

Mike Sylvester:

It’s funny because when you have all these medical issues, things like the weather, politics, and finances and things like that don’t really even bother me. I just think about taking each day and enjoying it and living my life and how grateful I am for everything that’s been done for me and how fortunate I am, not only to be alive, but to have a good quality of life and just be enjoying every day.

Lindsay Clarke:

Well, Mike, I had a chance to talk to you about your story when we were filming for Celebrating a Year Without a Stroke, but hearing your story is still, it’s an incredible story. I think it’s a testament to medicine, but also to your incredible willpower. One of the lessons that I take from it is what a role our willpower and our attitude and our perspective can play in all this. Not to dismiss the incredible science and doctors and teams you had, but you willed this. You’re here because of your attitude in large part. That’s one of the things that I take from your story. But I wonder, if you could go back before all of this, what do you wish you’d known, or what have you learned from this that you want to tell our listeners, share with our listeners?

Mike Sylvester:

Some of my issues were just bad luck and some of them are probably genetics, they think, but a lot of it was my lifestyle choices. I was getting a lot of exercise at the post office, of course, I’m a letter carrier. I was playing a lot of softball at the time, so I was lulled into a false sense of security that after a couple of softball games that could head over to the bar and have a frozen pizza and some chicken wings and wash it down with a few beers and then go to bed and you do that over and over again and you start to gain weight. My cholesterol was very high and I really didn’t go to the doctor very often.

Mike Sylvester:

That was really where my problems started. My body mass index got high and my cholesterol was also high, so I ended up with that heart attack because they figured it was just a tiny little piece of plaque broke off and ended up in an artery in my heart, so a lot of it was my lifestyle. I wish I could go back and maybe I’d eat a few more salads and vegetables and a lot fewer rib-eye steaks and hamburgers and pizzas along the way because a lot of my problems were caused by my lifestyle. Even though I got some exercise, I still probably wasn’t getting enough, and just eating also a diet that was very high in sodium. Sodium is probably one of the worst things, and of course, it’s in everything, so I’ve learned how to make things without sodium. If I go out to eat, I look for things that are low in sodium or things like salads that don’t have any sodium, so it’s those lifestyle changes I wish I could go back and change because I could have saved myself a lot of pain and suffering along the way.

Lindsay Clarke:

Yeah. You know what? I think you’re not alone. I think a lot of people feel like, “Hey. You were walking so much for your job, playing softball. I get enough exercise. Can’t I eat what I want to eat?” Some people can write and others can’t because of genetics. I think we all need to watch our numbers and go to the doctor and that’s such an important message and seeing how one little piece of plaque sent you into this journey is amazing. I know that your stroke was really a consequence of how they were treating you for your heart attack and it’s not necessarily that you… You didn’t have a stroke out of the blue, right, but you suffered, I think, a lot of the same consequences as every stroke survivor. What do you wish that people at risk for strokes knew or understood better?

Mike Sylvester:

I think a lot of those lifestyle issues also pertain to people putting themselves at risk for stroke. If you have a high body mass index score or are obese, if you have high blood pressure, and that was another thing, I had high blood pressure that was unchecked, and I kind of knew about it and I was on some diuretic pills for a while, but I quit taking them because I thought, “I don’t want to take meds the rest of my life,” and then now I’m taking meds the rest of my life, so it’s those risk factors for stroke, high cholesterol, high blood pressure, obesity, smoking. Fortunately, I was never a smoker. I was told many, many times along the way that if I was a smoker, I would have never survived the initial heart surgery or the stroke because both would have been worse, so it’s those risk factors for stroke.

Mike Sylvester:

A-fib is another one. My a-fib went away, fortunately, because that was a hassle to take the Warfarin and have to change the doses and get my INR measured all the time, but people that have a-fib need to manage that. It’s through those risk factors are taking the blood thinners or the anticoagulants that they can manage those risk factors and hopefully decrease their chances of having a stroke.

Lindsay Clarke:

Yeah, well, I know that sometimes people at risk for stroke, for a-fib, are because they have VTE or other diseases and conditions. Stroke seems so abstract. I think that hearing your story and what it took for you to get back to your life and your family and your job just shows that we don’t want to mess with our stroke risk, so thank you for sharing that. I wonder, you have become such a strong advocate and share your story with us for Celebrating a Year Without a Stroke, with our Talk Nerdy Counsel, and as well as with your local hospital and heart vascular center. Why? What made you decide that you wanted to share your story and become an advocate?

Mike Sylvester:

I just feel like I’m so lucky to be alive, and hopefully, by telling my story, I can give people some hope and inspiration if they have had stroke issues, if they have had cardiovascular disease, because every one of them is so different. Whether you have heart issues or stroke, they can range from very minor to being fatal and everywhere in-between, so sometimes people just need some encouragement to know that, yeah, hey, you can get better. You can recover. There’s no guarantees, but if you hear stories of other people who had it maybe as bad or worse than you have, it provides some hope and that maybe you can motivate yourself to go through those cardiac rehab sessions, through the physical therapy for stroke, through the occupational therapy.

Mike Sylvester:

I mean, part of it is the psychological fatigue that you suffer going through all of these treatments and these therapies. I mean, it’s hard to go get up early in the morning and spend eight hours sorting cards or building blocks. I mean, it’s like I was playing kids’ games trying to recover from my stroke. I was sorting cards and counting out pennies and nickels and dimes and I think a lot of people just maybe don’t put the effort into it that they should. But if people hopefully listen to my story and say, “Hey, yeah, I had a stroke, but if I listen to my doctor and my therapist and I work super hard, there’s a chance I can go back to my life that I had and that I will have a high quality of life. I don’t have to admit defeat. I can get better and I can recover,” so that’s why I enjoy telling my story, because I know there are people out there who think because they had a stroke, their life is over.

Mike Sylvester:

No doctor is going to give you a guarantee that yes, you will recover or you may recover, they’re just going to say, “You just do the best you can and work hard.” But I promise you if you’re watching this and you do work hard in your therapies, you do listen to your doctors, you do take your meds, that you’re going to be a lot better off than if you don’t, and there’s a chance that you can have a complete and full recovery like I did.

Lindsay Clarke:

Well, we’re really grateful that you’re sharing your story. I think you’re an inspiration, not just to people who are recovering from a stroke or a heart attack, but I think you’re an inspiration to everybody. I told you this last time we spoke, but you have been that catalyst for me, of finding time in my day, making sure that my day includes a walk or yoga or something, taking care of myself, whatever that is, prioritizing that, and not waiting to do it, so I think your story is just an inspiration to everybody, so we’re really grateful and thankful that you’ve decided to share it.

Lindsay Clarke:

I want to switch gears a little bit and ask you a question we ask all of our podcast guests. It’s kind of a fun question, but when you think back to when you were a kid, what did you imagine that growing older would look like?

Mike Sylvester:

My perception of growing old as a kid, I’m 50, so I was growing up in the early-to-mid ’70s and I have very distinct memories of grandparents and great-grandparents and growing old at that time to me meant that your hair was going to get gray and that all your joints would hurt, that you would end up needing a knee surgery or back surgery or hip surgery, and that you would end up in a walker or a wheelchair, and then end up in a nursing home, probably just in a bed or sitting in a wheelchair out front somewhere.

Mike Sylvester:

It was kind of a horrifying experience back in the ’70s to go into some of those places because you’d just see people just lined up. I remember my great-grandmother couldn’t even get out of bed. Then once a day, they’d put her in a wheelchair and prop her up somewhere. There were all these people just moaning and groaning and a lot of them had dementia and Alzheimer’s and other things and it was kind of scary, actually. I remember thinking, “Oh, if this is what it’s like to get old, I’m not so sure I want to get old.”

Mike Sylvester:

But you brought it up with all the medical advances and with treatments and people being able to be diagnosed with things, growing old isn’t quite what it used to be. Now, I have my mom who is 79, I have to tell her to slow down a little bit because she hops out of my truck and runs into her assisted living facility. My mother-in-law and father-in-law are both in their early 80s and they both get around and drive and are in very good health, so I think growing old used to be you would end up bedridden or in a wheelchair.

Mike Sylvester:

Now, if you’re still healthy, and again, you lead a healthy lifestyle, there’s no reason that you can’t be healthy and driving and doing everything you’ve always done into your 80s or even later. My wife’s grandfather, he drove until, I think he was 90 years old when he finally quit driving and he was very healthy, so growing old isn’t this horrific experience that I think it was probably 20 or 30 years ago. You see people that are very, very healthy. But a lot of that is lifestyle, too. If you keep your body mass index down and you eat healthy and get exercise, there’s no reason you can’t have a very high quality of life at 80, 85 years old and live an enjoyable life and enjoy the fruits of your labor and all the years you worked and live a happy, healthy life well into even your 90s.

Lindsay Clarke:

Yeah, definitely. Well, besides having a different perspective on aging and a cheerier perspective on aging, is there anything you feel like you’ve learned or you enjoy now as you’re aging? I mean, we’re all aging, right, but what wisdom or insight have you gained as you’ve aged?

Mike Sylvester:

Right now, especially with all of my health issues, just really talk a lot about enjoying every day. We talk about Celebrating a Year Without a Stroke. For me, it’s like celebrating a month, a week, a day, or even five minutes without a stroke. I mean, I literally don’t go five minutes without thinking about how lucky I am to be here. I remember when I was in psych therapy, the therapist that had my goals written down on a piece of paper and number one, it said, “My attitude will be gratitude,” and I’ve taken that to heart. I’m very thankful for everything everybody has done for me, for the fact that I have a good job. I mean, half the country was laid off during the pandemic and I’m still working, able to pay the bills.

Mike Sylvester:

I’m enjoying my life and just taking everything week by week, month by month, day by day, and even hour by hour, and just trying to savor things. Instead of this being caught in the rat race and rushing to get places and do things, just enjoying my life as I get older and I spend a lot more time doing nothing. Before, it was all about structure: “I got to do this. I got to do that.” Now, if I want to sleep in, get up in the morning, and have a cup of coffee, that’s what I do. Sometimes I get up early and watch the sunrise, or stay up late and have a glass of wine and watch the sunset, sometimes just doing those little things, and going for a bike ride at sunset or walking on the beach. It’s just enjoying those little things and making sure to take every day one day at a time, rather than being so focused on things that in the grand scheme of things really aren’t that important.

Lindsay Clarke:

Well, it’s an incredible perspective. I hope we can all try to channel some of that without having to go through everything that you’ve gone through, but I’m grateful to you for sharing your story, what you’ve learned from it, and giving us the chance to gain that perspective, so thank you. Thank you for sharing. Thank you for joining us today.

Mike Sylvester:

You are very welcome. It was my pleasure.

Lindsay Clarke:

That’s all for this week’s episode. Please visit yearwithoutastroke.org to learn more about the campaign and how you can help raise awareness. Thank you all for listening and have a great day.