Cardiac Athlete™ Spotlight: Benjamin Lee

Join us on Heart to Heart with Anna this week for another spotlight on Cardiac Athletes. Today we’re talking with athlete Benjamin Lee who went from living a "normal" life as an athlete for over two decades before discovering he had a potentially fatal heart defect. Join us as we discover how he went from being a healthy athlete to having to make some major changes in his life and what those changes were. Benjamin Lee is a preacher, an author, and a motivational speaker. He might be participating in the 2nd book in the Cardiac Athlete series by Lars Andrews. To purchase the first book in the series, go to this link (and you'll also help out Hearts Unite the Globe -- the nonprofit that provides this podcast free of charge to Listeners): https://smile.amazon.com/Cardiac-Athletes-Superheroes-Beating-Disease/dp/0993038905/ref=sr_1_2?ie=UTF8&qid=1505177810&sr=8-2&keywords=cardiac+athletes+lars+andrews 

Transcript

spk_1:   0:00
love him to heart, to heart. With Anna Way just finished Season 10 and we're gearing up for Season 11 which will feature Heart Warrior siblings. In the interim, we're going to put a spotlight on cardiac athletes. Lars Andrews actually wrote a book called Cardiac Athletes, and he has been a guest on heart to Heart with Anna. Cardiac Athletes features stories about athletes who have undergone cardiac procedures. Some of the athletes were born with congenital heart defects, and some had acquired heart disease. Today and for the next several weeks will be meeting with some cardiac athletes. So welcome to heart are with Anna Benjamin Lee. Thank

spk_0:   0:36
you for having me. I really appreciate

spk_1:   0:38
it. Well, I'm excited to have you on the program today, and I'm curious to learn about your cardiac condition.

spk_0:   0:45
Sure, I am 39 years old. Back in 2007 I was diagnosed with hypertrophic cardiomyopathy, or HCM, and I went into my physician for a routine physical and something came up abnormal

spk_2:   1:01
on the E k G. M i T

spk_0:   1:03
Wave was actually inverted. And so from there I saw my local cardiologist and and I've seen three cardiologists and I ended up getting diagnosis with eight cm hypertrophic cardio myopathy. And so it's a genetic condition where a portion of the heart muscle was enlarged and so got diagnosed with that. That was a big surprise that really had any issues. For the most part, with exercise or anything like that.

spk_1:   1:28
You were in your twenties. You were

spk_0:   1:31
Let's see here in 2007 I would have been, Yeah, 27. 27. 28 U. S. So it was a big surprise. I've always been involved with fitness and exercise, but I'm thankful. They asked me if I wanted to do a kg and I said to covered by insurance and they said yes, but said Let's go ahead and do it so happy that identified it. I had another issue come up a few years ago. So I'm happy that at least you know, learned what was taking place

spk_1:   1:58
now with HCM, Isn't that a condition where the heart wall is actually thicker and cant it actually cause problems with the heart beating properly?

spk_0:   2:08
Yes, that's right. Yeah, there's gonna be some abnormal thickening and it really depends upon each person. Thankfully, I don't have any obstruction of blood flow?

spk_3:   2:18
No, but

spk_0:   2:19
that can happen. The other issue, too, is with the electrical component. There's a small amount of people that can have sudden cardiac arrest as a result of it, and so it's a major condition, and a lot of people have it that are not aware of it,

spk_1:   2:35
right? Isn't that often the cause of death for some athletes that we find who just pass out on the playing field?

spk_0:   2:44
Mmm, that's right. Yeah, and sometimes there could be some other issues involved, you know, with respect to the heart. But unfortunately, that can often be the case. So I met a woman named Lisa Salzburg, and she really helped me out with this. She has a nonprofit group, each c M A, and it really just help me out that at no idea what it was. There's another condition called athletes heart. So people who exercise you know naturally that there will be some thickening of the heart they had to determine first that I have athlete's heart. It was this something else. And so I was in Columbia, Missouri, at the time, and I was in pharmaceutical. Celso is already working with cardiologists. And so from there I went to wash you in ST Louis to talk to a specialist there. He confirmed it. He said, No, you have HCM. But I wanted another opinion. So I went to Minneapolis Heart Institute, where Dr Barry Maron was at the time, and there's a whole HCM center there. And so that's where I got the conclusive. You know, this is exactly what you have. So it's a big deal and one and 400 people have it. And so when you really start thinking about that, you

spk_2:   3:53
know, that's a lot of people.

spk_1:   3:54
That's a lot of people. That's a lot of people. Okay, so it sounds like you had been an athlete all your life. I'm sure when you were in school as a kid, you had to have physicals. This isn't anything that presented itself when you had your regular physicals.

spk_0:   4:09
No, not that I know of a kind of joke around. I tried to be an athlete, played basketball or a bank. Cross country,

spk_2:   4:15
never had any issues. There was a brief period when I was younger, where one of my doctors thought I had asthma. And so they put me on. Ah, Heller. And I know sometimes that could be misdiagnosed,

spk_0:   4:27
but I can't outgrew that. And I don't know exactly what that may have been, but outside of that, never really never had any problems.

spk_1:   4:37
So apparently, this is something that you're born with. Is this something that has a genetic component?

spk_2:   4:44
It iss? Yes. They have identified some of

spk_0:   4:46
the genes. I've done some DNA testing. So it is something that is genetic.

spk_1:   4:52
And so have people in your family been tested as well? Now that you know, this diagnosis is conclusive.

spk_2:   4:59
Well, I have and I still am. I'm encouraging my family members. But to be honest, I don't think other family members have. I have a

spk_0:   5:07
sister. She's five years older than I am, and I know she's got some other health conditions. So I know she's going in

spk_2:   5:14
and she has talked to her physician about what

spk_0:   5:17
I have. But you know, sometimes that happens. You try to encourage family members. You do the best you can. I hope that they'll listen and and heed the warning. But I'm not really for sure of anyone in my family that has a condition. But it is a genetic condition,

spk_1:   5:32
said. Do you know if past family members who died suddenly where you might look back now I say, Oh my goodness, I wonder if he had HCM.

spk_0:   5:41
Yes, that's something I was looking for and something that I talked to my mom about. My father passed away about six years ago and he had cancer. But I don't know of any other family members that I've died suddenly or anything like that. So it's kind of been interesting. I've been doing some research and have done some in the past, but there's a few family members that I kind of think about with some of the things that they've said and things like that. But again, you know, you try to encourage people as much as possible, you know, But they still gotta take those necessary steps. But was ironic. Waas When I was in sales was in sells for about eight years, and one of my colleagues that I worked with after I left the company, we call

spk_2:   6:22
it up about three

spk_0:   6:22
years ago and she informed me that she has the same condition, Um and so yeah, it was totally surprised to hear that, you know, you just never know. That's why it's important to keep up with her health, and you have to be aggressive.

spk_1:   6:37
But I think that's also why it's important to talk to people about it, don't you? Venturing

spk_0:   6:41
absolutely. Doing things like this is great, and the more awareness and just being aggressive and Proactiv better off will be

spk_1:   6:51
absolutely

spk_5:   6:53
the most common theme. Here is why she always needed a lot of attention. She had strokes, even though it's a natural inclination to withdraw from the sea each day. Community, I think, being a part of it, help me be part of the solution. Heart to heart With Michael Please join us every Thursday at noon. Eastern. I'm Michael even on I'll be your host. As we talked with people from around the world who have experienced those most difficult moments,

spk_4:   7:25
you are listening to heart to heart with Anna. If you have a question or comment that you would like to address the show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with them.

spk_1:   7:43
So do you mind if I ask if you're married? I

spk_0:   7:46
am married. Not all mine. I am buried, huh? I've been married now for 13 years. My wife's name is Nikki. Fun fact about us. When we met, her maiden name was Benjamin. So I said, Well, listen, that's my first thing. We should just go ahead and get married. Yes, he said Okay, now you say that, but, uh, but we ended up getting married and had a son named Joshua. And he's six years old. He just turned six not too long ago. So we've been blessed to have him. I'm hoping and praying that, you know, it's basically like a one in two. Chance. If he will have HCM so

spk_1:   8:25
t know, either he will or he won't, which is pretty much the way it would be. Anyway. Way say one in 400. But the chances are much higher since you obviously have it. And really, either he will or he wants. So how old will he be before you have him tested?

spk_0:   8:42
Well, that's something that I've been looking into right now. Some have suggested around nine or 10 years old I've been thinking about getting like a baseline for, um, you know, like with his e k g. He's still really young, though. So what I've been advised is toe wait a little bit longer and then kind of start checking and seeing.

spk_1:   9:01
Is there any downside to having him tested early?

spk_0:   9:04
I don't know. I don't know if I can answer that fully. I don't know if the reasoning is behind just because he's so young. With that, someone did recommend Go ahead and start getting some some records now. But I'm not really for sure.

spk_1:   9:18
Well, I guess the reason I ask is because it just breaks my heart every time I hear of a middle school or a teenage athlete who passed this out and then, you know, ends up dead and come to find out it was an undiagnosed heart condition. And so, I think to myself, Well, since we know heart defects of the number one birth defect, and it's not something that's talked about often enough. But we do know that as a society and as part of the heart community, why don't we encourage doctors to when their Children have their annual physical you know, stick the monitor on them, get that baseline data, and it's a non invasive procedure. It's actually really quick now, compared to what it used to be 20 years ago, when my son first started getting them. Yeah, there's little sticky things that you have to put on and take off. But really, that's more of an annoyance than anything. And they do it now in what, 10 minutes?

spk_0:   10:14
Yeah, it doesn't take long. And, you know, I've been thinking about this too. I'm in Texas right now, so we got affected with Hurricane Harvey, So things kind of bit off a little bit, but yeah, this is a good reminder for me. I need to go ahead and do that, get that set up and just started getting some information on them.

spk_1:   10:30
Yeah, well, I think it's interesting that you had this condition. Probably all your life. But you did it. No, you don't know of any other family members, but there is a genetic component. But now you're being an advocate for this in your family, and I think that's wonderful. And I hope you're saying is on the other side and doesn't end up having this. But if he does, at least his daddy is smart and is getting it checked out. Right? And so what kind of accommodations have had to be made now that you've had this diagnosis?

spk_0:   10:59
Well, that's a great question. When you get a diagnosis like this, it really does put everything into perspective. It forces you to figure out what's important from a health standpoint after getting this diagnosis. What I did for the next few years was to just follow up and continue to get my e k g and my echo, my cardiac m r I, and nothing really has changed. But in 2010 I ended up getting a internal cardio defibrillator and I seedy place because my physician that I talked Thio, he said, You can really describe this condition with one word and that is unpredictable. So, you know, I've been thinking a lot about once You get a defibrillator, you know that changes everything, you know. I mean, it changes health insurance, it changes life insurance, and you got a piece of metal in your chest s O. That was probably one of the big accommodations or the biggest accommodation that I had to do. I was still exercising. And it does put some fear into you. Now you start thinking, okay, What's gonna happen if exercise or if I do too much? But thankfully, I was able to work through that. But then I got the defibrillator in 2010. So that added a whole another dimension of accommodations and what I can do with exercise and things like that. So I just got my second defibrillator last December, December 29 I got that put in at Tufts Medical Center out in Boston and think Blower things were going well with that device, and I haven't had any problems. I've never been shocked, which is a blessing. You know, I've heard stories about people who have been shocked. Thankfully, as now, I have not received any shock from the defibrillator.

spk_1:   12:41
Do you think that this gives Nicky a sense of security? That there's something looking over you protecting you? Just in case?

spk_2:   12:50
Yes. It's a mixture of feelings for Nikki security in the sense that I do have it. And yet they're still, you know, there's still some fear and apprehension there just because, Okay, you have the device and that. What if it doesn't work? Or what if it does shock you? Or what if it shocks you inadvertently and so

spk_0:   13:08
I think it does help her out. You know the fact that I do have it it was a big deal. Get in it in 2010. I'm not gonna try toe sugarcoat or say, you know, it wasn't a big deal at all. It was it changes everything. I mean, just having a device in your chest and sew that's having an impact on her. We've had to process some things throughout the years. I think it does give her a little bit more comfort now and in the event anything happens. I do have a backup plan, and that's really the way that it's designed. This is more preventative in nature. In the event that I went into some fatal heart rhythm,

spk_1:   13:41
right, right. I think that these air life saving devices it doesn't come without fear, like you said, because what if something happens to that device? But I think it's great that you have your own monitoring system and this is probably going to give your doctor's a heads up. If things start to go in a direction that you don't want it to, and then they can decide what measures they need to take next. So I'm impressed that you are continuing to exercise despite getting the diagnosis, which I'm sure was scary men. Despite having to exercise with this new device in your body, I'm sure that makes it feel strange. So can you tell me what being a cardiac athlete means to you?

spk_0:   14:23
Sure, being a cardiac athlete is a big deal, and part of it for me, it's It's really all about attitude. So have a nice e d. And I decided instead of that meaning internal cardio defibrillator, I've changed it. And so it doesn't mean that to me anymore. I mean, it does. But you know what I'm talking about instead and means I can do. And so what? I

spk_1:   14:46
would love that. Thank you. That's awesome. I can't do exactly Okay. Great.

spk_0:   14:52
I couldn't do it because really, you have to add that because I had two options after I got the device the first time I got it in 2010. They can't really do anything for 56 weeks, and then you got to really take it easy, but you got to get back out there. And so I've always loved fitness. I've always loved exercise. I like to run like lift weights. And I had to start all over again with five or £10 dumbbells and things like that. So for maybe in a cardiac athlete, I wantto motivate and inspire people as you mentioned earlier in the vent. This happens to my son. I want to be able to motivate and inspire him that, you know, life is not over. We're gonna have some different challenges. We're gonna have to adapt and do some things differently. But it really goes back to attitude. And so I've had to start over about three times the first time in 2010 getting the device. Then in 2014 I was actually on the treadmill, working out. I ended up having a blood clot in my right coronary artery. While I was working out, I felt like I was having a heart attack. Even I've never I

spk_3:   15:51
Wow,

spk_2:   15:52
I have what's got April Cho aneurysm, which a small percentage of people with HCM have. And so that was you know that was nuts. I just had no idea what was going on. You know, it's interesting because I was in

spk_0:   16:07
pharmaceutical sales and I usedto cell from the American Journal of Cardiology and a couple of years later, actually, in 2015 I'm a case study now in the American Journal of Cardiology because it really serious which with having that event, they described it as a cardiovascular event. And, you know, that's a big deal just having that blood clot. So I'm on a blood thinner right now. I'm going to be on that indefinitely. But I had to start all over with that had to go to cardiac rehab, and I was walking on the treadmill at 1.7 miles per hour, and you know, you got to start all over. But that's the idea of the I c d that I can do. You gotta believe in yourself, and obviously you have to be wise. So I'm not doing any marathons or anything like that are lifting super heavyweights, but gotta bounce back and you have two options. You know, I need to stay healthy so I can't go to the extreme of eating my sorrows away, right? You know, I need to get out there and I need to work. And I need to be around to the best of my ability for my family.

spk_1:   17:08
Wow, I love your attitude. I think you've got the right attitude. You are a lucky man. It sounds to me like there were many opportunities that could have gone the other way. And it sounds to me like you have some guardian angels watching over you. You've also got the right attitude, which I think is amazing. And I'm so enjoying hearing your story. Are you going to be a participating in Lars is book too, about cardiac athletes?

spk_0:   17:37
I I do not know. I have not spoken to him. So I really don't know love to help out any way possible.

spk_1:   17:44
I think it should, but I think you should check into it because both of the other product athletes that I have featured in this series are both taking part in that and

spk_2:   17:53
so cool.

spk_1:   17:53
I think your story is really unique. It's totally different from Lisa's totally different from Tim's. So I think it would add some nice variety Thio the book and it sounds like this is something that we need to shed more awareness on. So thank you so much for coming on the show today. Benjamin.

spk_0:   18:10
You're welcome. And I really appreciate the opportunity.

spk_1:   18:14
Well, it was fun. So thanks for listening today, folks. Please come back next week. When will future another cardiac athlete? And until then, my friends, remember, you are not alone.

spk_4:   18:25
Heart to heart with Emma is a presentation of hearts unite the globe and is part of the hug Podcast Network Hearts unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members If you would like access to free resource is pretending to the CHD community Please visit our website at www congenital heart defects dot com for information about CHD the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more. Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community Heart to heart with Anna With your hose down, Jaworski can be heard every Tuesday at 12 noon eastern time