Episode 60 | Jack Boepple’s cardiac sarcoidosis hit him like a linebacker. And he would know.

Jack Boepple is a former Boston marathon runner.  A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies.  But even all of that couldn't prevent sarcoidosis from attacking his heart.  In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests.

Jack Cardioversion image

 

 

Show Notes:

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

 

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Below is a web generated text version of my interview with Jack Boepple.  Please excuse any spelling errors. 

Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast.

Thank you. Glad you to have me.

So you reached out to me after listening a little bit because, • • uh, you have cardiac sarcoidosis. How did you first find out that something was not right with your heart? • • • • • •

Um, actually, it was the event itself. So three years ago, March, • • um, I'm sitting on a couch • • • and I could feel • • some palpitations going on. And I put my hand on my chest and it felt like my heart was just rolling. • • So I asked my wife, can you just check my pulse? So she did, that looks fine. Then she put her hand on my chest and she's like, we got to go to the emergency room now because it was just doing all these flip flops.

She could tell.

She could tell there was something wrong. And I'm like, uh, • • I've had palpitations before. I'm fine. I'm just going to play through • • • • um. • • And so I didn't do anything. That was a Friday. • • And I woke up the next morning and I was still off. • • So I took a baby aspirin I sent a note to my primary, uh, provider, realizing through the portal, realizing she would not see it or address it until Monday. • • And then that day, we went for a long walk. We had friends over, smoked a cigar, had some wine, sundae, went for another long walk, came home, got on the rowing machine, rode for 45 minutes, and by rowing, actually felt better. Um, but I got a phone call on • • • • Monday morning from, um, the primary nurse. And she said • • everything you just described to me, you need to be in the emergency room right now. And I said, I don't want to go to the emergency room. So she made an appointment for to see the primary. And I saw her in the afternoon and, • • • um, she took an EKG • • and she used this very technical term • to tell me what she saw. It looks funky. I'm like, what does funky mean? Uh, so she's like, I think you need to go. I want you in the Ed. I mean, right now. • • And • • • • her office was like a 20 minutes ride from • • • • the, um, hospital. And I'm like, • I want to send you an ambulance. But you're not going to go, are you? I'm like, no, • • • • • I drove to the Ed, • • they checked me in, they did another EKG, and when I got to the Ed, they fast line me. Usually you have to wait forever. I got right in. They did another EKG, they said something's funky. Then they brought in a cardiac specialist. He said the same thing. So they kept me for observation. • • • And the next day, they • • • • • • • did an EKG and they said, based upon those results, we either going to send you to stress, uh, test, or we're going to do an angio on you, uh, angiogram. And I'm like, come on, • • • • • bring on the stress test, because, • • • • um, • I work out quite a bit. • • • • • • • Um, • • • • • • • • • • • • • • • • • • • • I'm losing the term, but all my blood numbers come back great. • I mean, there's nothing wrong with cholesterol. My cholesterol numbers are off the scale. Great. • • • • • • • • • • • I'm like, come on. There's nothing wrong. So then they • • • decided, um, they're working to do a stress test. They're going to do the angio. And I got someone asked me, are you ready to have stents put in your heart? Like, what are you talking about? • • And I'm like, sure, but you're not going to find anything. And so they, • • • • • um, • • • bring me in, I do the angio, and I come out of it, and they're like, yeah, you're right. There was no blockage. Nothing. I'm like, yeah, I told you that, right? But we still want to hold you. And now it's about 400 in the afternoon, and my wife's been there all day. And • • • • I say, go home. Go get some lunch, go take a shower, go feel better. • • And • • • • • in the room talking to a nurse, and next thing, there's four more nurses flying in the room, • and they're saying, we got to go to ICU. I'm like, what? We got to go to ICU now.

Wait, you're feeling fine? They've done the angio. • • • • • • • • • I know, but the listeners don't know yet. • • • But you and I live, uh, in a parallel • • • • lifestyle, uh, with respect to the way we work out. You were biking 120 miles a week. You've done a half iron man. You are on, uh, your rower all the time. So you're not just, like, a kind of standard walking around fit guy. Fitness is your lifestyle. • • •

Absolutely. • • • • • • • • Not only is it done for physically, but you probably can relate to this, that it's a mental release. And so when you're doing you're on your bike or you're working out, all of sudden a you're solving all the problems you're trying to work through.

Yeah. So the nurses come rushing into the room, you're sitting up saying, okay, something's funky, but I'm killing it on all these tests. And they keep accelerating the level of care, • • • • • right?

All these nurses are running around me, and I have one nurse just staring at me, and I'm staring at her, and she goes, hello. And I say, hello back. And she jumps backwards. • • So apparently I found out later that • • • • I think my heart rate is, like, • • • • 100 and $8200 something very high. • And apparently, when it's that high, um, you're coding. And so they're not used to anybody • • being conscious when this happens. And so • • • • they're willing me down to ICU. I'm fully conscious of what's going on. They get me in there, they hook me up, and, • • • • • • • um, • • • they're pumping me full of all these • • • drugs, um, to try to get the heart rate down, Amyotarone. They just give me an IV of it. They're just trying to do this. • • • And after about 8 hours of my heart at this elevated rate, they come in and say, • • we're going to have, uh, to shock you. I'm like, really? And • • • • • • • • • • • I'm like, in the morning now, • • • • • • • • • • • • • • • • • like, wow, this is real. All of a sudden, this is real. • • My wife is with me, and I'm like, I want her with me. But I'm like, that's selfish. I don't want her to see me be shocked. So I asked her, do you want to be here for this? And she's like, no. • So she leaves the room, and they give me, • • • um, a Twilight drug and said, you won't remember anything. • • Uh huh. So they hit me. I remembered, no way, • • • really.

And this is to get your heart rhythm back into a normal range, right?

It's a • • • reset. So they were trying to reset my heart. And it • • did. • • • • • • And, • um, they said most people, just after it happened, the nurse said, you did so well. I'm like, what does that • • • • mean? They said, you didn't swear. I'm • • • • • • • • • • • • • like, I got through that. • • • • • And, • • um, they described it like being hit by a truck. And I said, I don't know what that means, but I played football, and I feel like I just got hit by a professional linebacker, and I didn't have any pads on. I mean, it just wax the hell out of • • • • • • you. • • Uh, so the rest of the night and when you're nice to • you, you're watching your • • • monitors. • • • • • • • • • • And I said a prayer that • • • night, and I said I would never, ever talk about it to • • • anybody. • • And a few days later, we had someone visiting us, a good friend of ours, and she was on a spiritual journey long before I was. And she asked the one question where I had to tell what • happened. And she asked, how does this change your relationship with God? And I looked at her, and I'm like. I said, it didn't. I said, when I'm sitting there and I'm watching those monitors and I'm watching my heart, trying to get back to where it was, this abnormal • • • state. I said a prayer of thanks. I said, thank you for the great life I • • • had. Please watch my offer. My wife. Please watch over my • girls. I'm not the type of person to sit there and beg and plead. So I said a prayer of • • thanks, • • • mhm, because I've been thankful for all the great opportunities I've had. Sure. • • • So the thing I said I would never talk about. I talked about. • • • • • • And it's been a real journey since then. • So then the doctors are trying to figure out what caused all this. So they went down the Lyme disease • • route. • • • • They did, um, all these different things. I did a cardiac MRI. I don't know if you ever had to do one of those. That's not one of those MRIs where you can just put in the tube. I fall asleep in those things.

Mri I do, too. That doesn't bother • • me.

Yeah, so they put me in, but you got to hold your • • • • • breath throughout, um, the test so your chest isn't moving up and • • down. And so they can isolate what's going on the • • chest. And after that cardiac MRI, they sort, uh, of had an idea that maybe it was sarcodosis. So that was their working theory at that • • time. And they would not let me leave the hospital until I had an • • • • ICD and, um, pacemaker installed on my • chest. So from the time I entered the hospital, the time I left, it was eight • • days. Went through all these • • • tests. It wasn't • • • • • • • • • until several, um, weeks later that I actually did a Pet scan. And that was basically their • • confirmation • • • that it looks like sarcastosis. As you probably know, they never can say it is sarcodosis unless they do a • • biopsy and they can actually confirm it. Well, Pet is noninvasive, • • • so, • • • uh, they figured out it looks. • • • • • • • • • • •

Like where in your heart, Jack, is it on a valve. • • • • • • • • • • • •

Or the way it was described to me, it's both on the • • • inside and the external of the heart. And that's the tricky part is the external part of the • • heart. The internal part of the • • • • • • heart. • Um, you can eventually address through ablazion. But if it's also on the external part of the heart, the external ablaze procedure is much different. They have to go underneath your ribcage and • • • up and then break the sac around the heart, then try to do the blazing that way, which is a much more tricky operation. Yeah, but I went from being on no medications whatsoever to being on. I can't tell you how many • • • • • • pills. One of the reasons I reached out to you is a lot of the folks talk about how the sarcmens just beat them up. And I've been fortunate. • The methotrexate I'm • • • • on and, um, the pregnantone I'm • • on, they really didn't, um, beat me up too bad. But the cardiac meds just wailed on me. Amy odorone. One of the side effects of amioterone • • • • • • • is, • • um, sun. But if you get in the • • • • • • sun, you just start burning up rather quickly. Like I could literally, on a sunny day, walk across a sunny parking lot when my wife would pick me up from the train station and I'd be beat • red. So it turned me into a • • • • • vampire. And you're an outdoors guy, right? • • So, nine, 09:00 the morning to four, 04:00 the afternoon. I just stayed in the • • shadows, and it • • just killed me. Just. • • Absolutely. I wanted to be. • • • • • • • • •

Outside. Are you retired • • • or what is your job? Were you not working? What was going on then?

So I'm still working. Uh, • I work for, um, Blue Cross. Blue Shield of • • Illinois. I don't know if you've ever, um, heard of Lean or Six Sigma, but that's sort of my gig. Basically it's process improvement type of work. I go in and look at • • • • • • things. • • • • Um, yes, but in the summer months, I like to be outside. I love the • • • • • • • • fish and do all that stuff. So that was really a Downer trying to get addressed to those drugs. And there's other drugs that they keep on wanting to slow your heart down. So lisinopril is one of • • them. It just slows everything down. And I was being lethargic, and I'm like, this is not how I want to • • • • • • be. And so that sort of started the journey towards getting off. How do I get off? Uh, these cardiac meds. So they transitioned me about a year later to this drug called Soda • • • • • Law, which doesn't have any side effects. Amy, odorone, but it has different side effects, which is more • • lethargy. And I'm • like, I can't do • • • • • • • • • this. I started, um, exploring • • • Ablation and • • • • • my, • • • • • um, um, electrical cardiologist. He's done a bunch of Ablations, but the fact that it might have to be both internal and • external, he said, I want to give you • • to refer you to one of the experts in the field to do this, because if it's external, I don't have experience doing that.

Tell us all what Ablazion actually • • • • is.

So my understanding, I'm going to get this wrong, and you get people. Okay.

I won't correct you, that's for sure.

So it's basically the same approach as an angio. They come in • • • through the leg, • • and when they find a • • • • • • • • • • • spot, • • um, they believe is • • Sark, they try to poke it and figure out, is this causing the heart to go crazy or not? Yeah. And if it • does, then • • • • • they do, um, some type of cauterization or some type of way • • • to remove that tissue.

The granuloma.

Yes.

Right.

Okay. • • • • • • So I, um, talked to two different experts. • • • • One guy said, you just might have to live this way the rest of your life. And I talked to another guy like, you're too young to be living like • this. This is what we can do for you. And it • • • was considered a high risk procedure. But I'm like, I can't continue to live like • • • • this is like.

You can't pass a couch without taking a nap.

Right.

With talking about the lethargy and all • • • that.

It wasn't that, um, bad. • But for me not to be able to work • • • • • out, that was my • • • • release. I needed to be able to work out, • • • • and it • • just beat me to the point I couldn't do anything. Got it. So eventually actually did this • ablasian. And before you do the Ablasion, they stopped you on all cardiac meds because they want the SARC to be • • • active. So what does that mean? When the sarcas is active in the heart, that means you can go into V TAC. And • • so two • • days before the procedure, I'm off all cardiac meds. I'm sitting at my desk upstairs, my wife's downstairs, and my device • • • fires. And so I • scream and she comes running up and she finds me basically in a fetal • • • • • • • position, um, • • • because I wanted to be tack. And so the device did what it was supposed to do. They've called an insurance policy, and • • • it reset the heart. And • • • • • • so the guy doing the um, Ablaze like, yeah, we want your heart to be active so we can find it. And after he did the procedure, he came in and visited with me, and he • • • • • • said he was all amped up, all excited. He's like, we found five spots, and we got him. • • • • And he's like, no more um restrictions, no more cardiac men. You can start going back and doing your normal • • activities. • • And they were in there for five, 5 hours. And they said, we still see stuff on the external part of the heart. But you know what? We had you under for five, 5 hours, see what this • • • does. And here I am, a year later, I haven't had • • • • events, and I'm off cardiac meds, which is good. I'm working out again, but I always have to watch my heart rate because you don't want this little device to fire.

And so you still have • • • • • the um, pacemaker. Is that essentially what it is? Pacemaker and ICD ICD, which is basically shocks your • • • • heart. So if that thing fires, that means you're • • • • • • having laypersons from heart • • • attack.

Correct. And the technology in the ICD is nothing but amazing. They can set the levels as to when it goes into pacing • • • • • mode, when it, um, will fire a warning to your heart to say, Knock it off and then to the full • • • • • • • • • • • • • reset. It's just rather amazing. The other thing about the • Ablazion • is the device was pasted me, like, seventy, 70% of • • the. So instead of my heart working on its own device had to keep on helping it. And I'm like, that doesn't sound right to • • • me. And so after the um, Ablasian, I'm being paced less than one 1% of the which is just • • • • huge. My heart's • • • working by itself now, which is what I • wanted.

You're still taking a very small amount of prednisone, right?

Yeah. • • So when I did all this started, they had me at twenty, 20, and then they stepped it down. I'm at two, 2.5 • • now. • • • • • And • • the Maxwellsight, I'm on • • fifteen, 15 once a • • • • • • • • • • • • • • • week. I know that's • • • • low, • • • • but it's still a drug. Also, they throw in • • • the Alanronite and • • • • • the • • • um, looking for the other drug. I'm on folic acid. So the allndronate to try to help • • • alleviate bone loss. Um, I think the folic acid does something else to counter one of the side effects of the • • methotrexide. Okay. By Sark Dock, actually. Who's one of the docs has been on your • • podcast, Dr. • • • • • • Sparn. He's, uh, my Doc. • • • • • Wow. Listening to your podcast has started connecting a bunch of dots for • • me. I think one of the podcasts you talked about, what's the most important factor in dealing with Sarcodosis? I'm listening to this, and I'm trying to • guess, and I like health. And I was wrong. It was zip code. And I'm like, okay, I'm very fortunate to be where I • • am. One of the leading guys in Sark research is • • here. He's my Doc. So I got very lucky. • • • And my cardiologist, um, at Northwestern, have been nothing but outstanding. • • • • And the guy to do the Ablation, um, was out of the University of Chicago, who was considered a leading expert in doing Ablasians. • • • And I feel very fortunate. • • • • • • So I guess when I wrote you just like three years. • • • • • • Wow. I know a lot of this discussion on this is • • about the people that hits the most is the pulmonary people. • • • • • But there's a small population of cardiac people out here, too, • • that there's additional level of complexity that goes into it.

And even rarer is those of us who are neurosark people. • • • • • • • • So, • • • um, it is a lot. So, uh, let's back up a little bit. Thank you for sharing the story of your • • incident, but you mentioned your wife and your daughters, and you are my age, so I'm assuming that your daughters are grown or nearly grown. So tell us about your family • • • • life.

Yeah. So my wife and I, next year, will be married. Forty, 40. We were high school • • sweethearts. I was a football player. She was a • • cheerleader. Cute.

You got me by a couple of years on the marriage. I think we were on thirty 38th year, but, yeah, go ahead.

All right. • • • • • • • • And with, um, the Air Force Academy. So, uh, I was in the Air Force, and both daughters were born • • while we were in the Air Force. Uh, so the oldest, Christine, • is, • uh, thirty 35. The Madeline is thirty 31 • • • and is an occupational therapist. • • Uh, and she loves what she does. And she • • welcomed a son into the, uh, world a year ago. So it's our first grandchild. And my daughter Madeline is in marketing, um, living downtown Chicago, having a blast. • • • • • • • • • • So it's been a lot of fun with the girls raising them. They're, uh, both University of Iowa grads, and they had a lot of fun • there and learned a lot, and they made a lot of friends. In • • • fact, my wife's, um, husband is also she met him at the University of • • • • • • • • • • • • • • • • • Iowa. Again, both of, um, them are very close to us. • • So we're staying here for a while. Yeah.

Your daughter's husband, I • • • believe. Yeah. • • Right. Well, that's, um, • • • • • • • • • • • cool. So you've led an active life. You were a football • • • • • • • • • player. I've got to talk a little bit about the bicycling and so • • • • forth. So you, uh, were riding one 120 miles • • • a prior to this. And I consider myself pretty avid cyclists. But for me, one 100 miles a week is a week that I put a star next to in my logs. Like, this was a really good week. And you were doing that • • regularly. Yeah.

That was several years ago when I was really, just really into • • • • • it. And, • • • um, my baseline is jogging. So that's where I started. And I've • done four • • • • marathons, including the Boston Marathon, which was joy to Drew. Congrats. Thank you. • • • • • • And three of the four marathons, um, I did under four, 4 hours was my goal. And • • • • so I was training for this, um, one • marathon. And I usually never signed up in advance • • because if the weather was bad in Chicago, I didn't want to be running in nasty weather. And so I went to sign up the day before, and they were like, • • • no, it's, um, all full. I'm like, But I trained for a marathon. I'm ready to go. So someone then told me about triathlons. And I swam in high school, too. So I'm like, okay, I can do the swimming part. So I got on a bike and it was one of these old swim • bikes. And I realized, all right, I got to do something better than this. And so I started upgrading the • • bikes. • • And my very first Triathlon, um, I did was a half Iron Man because I trained • • • for a marathon. I'm like, uh, I can do this stuff. And I'm like, after I did it, I'm like, oh, I can do a full Iron Man. And my wife's • • like, not happening. • •

Uh, so a full Iron Man for people that don't know is you start out with • • • • a two, 2.4 miles, I • • • • • think. And then you ride your bike. One 112 miles, you run a marathon, correct. All back to back to back, correct?

Yeah. So I did a half version of. • • • • • • • • • •

That. So we • • • host an Ironman event here, uh, in Roanoke, Virginia, where I live, and it's a half. And I just did the bike part last • • • year. Not as part of the event, uh, but just to do it. And of course, here we live in the mountains, • • • • • so it's a very • • difficult. Fifty 50 it is. • • • Fifty, 56 miles. • • Uh, • • right. I can't imagine doing, um, all those other things on either side of it yet. Lots of. Lots of people do. Or to double it. That's. • • • • • • • • •

Crazy. But it's something I really enjoyed. I just enjoyed the feeling of being outside and in • • • • • shape again. That's part, uh, of the journey. I'm trying to what's my • • new exercise normal. So last • • • • • • • • summer I was only, um, able to get forty, 40 miles a on the • • • • • • • • • • • bike. I think I even wrote this to you. I'm pedaling, I'm pedaling. I'm like, I know I'm going fast. And I look down the speedometer and I'm like, no, you're • • • • • • • • • • • not. That's part of getting older, too. I understand that. • • • • But just the energy doesn't seem to be close to what I've expected on the trajectory of getting • • • • • older.

Now, the ablation that you had done, uh, when was that?

That was March of last year.

So you're still basically recovering from that, would you • • • • • • • • • • • • say? • • • • • •

Um, • • • • • again, I don't think so. • • • • • Because it's a year out and I had no cardiac events. So should I start having cardiac events • • • • again then? Maybe I need to go back and get another • • one. And I've heard there's been people that have to go back and get repeated ablations, but I think if I go back again, they're going to play with the external part of the heart because there's still the scarring there on • that. • • • • • • • But otherwise, I, um, feel pretty good.

So you're walking around feeling good, • • but your fitness level hasn't returned to the fitness level that you had pre ablaze and • precise.

No, not even close, right?

It might not. • •

Right. I will never run seven and a half miles every other day ever again. It just won't happen. Right. So I now do • • intervals. I was told that's mhm even better for me. So I get my heart rate to a certain, um, • • point, and then I walk until it gets to a certain point. And I keep on bouncing up, back and forth.

Right?

Because • • • • • • • • • again, I don't want this device to. • • • • • • • • • •

Fire. Um, it seems to me like you're living right on the edge. So you're doing intervals, which is where you run really hard and you watch your heart rate get jacked up. And then when it gets to a certain point, you walk until it comes back down. And then you do it • again. And, uh, then you walk until it comes back down. Then you do it again. And I've done this on the bike, and I've done it running as • • • • well. And the word, um, when you're running is, • • • • uh, Norwegian word • • • • • fartlek, which is not what it is. I think it's F-A-R-T-L-E-K. • Fartlek. It's named after the guy that developed. So, um, you're doing that. So you're really pushing the boundaries, right?

Yeah, I'm trying to get back to feeling fit. So I guess to answer your early • • • question, I'm better than where I was before the Ablaze, but I'm not preparedak event. Uh, so not even • • • close.

So how have you reimagined your life now since you've had to go through. • • • • • • • • • • • • • •

Sarcodosis? • • • • • • • Um, I think I take things more in stride now. • • • • • • Maybe it's just, um, everything I just look at, • • like, thankful for every moment I have now. Because, again, I thought this could have been it. I can't tell you how many times my wife and I have been told that if I had not been in • • • shape, no way. There's just no way I would have made it. So the fact • • • • • • • • • that I just, um, did a stress test, and the nurse looked at my record and she's like, I've never seen anyone be in V tag that long and come out of it. • Okay. • • • • • • So I feel very blessed. Um, so I try to look at that. I do a lot of volunteer • • • • work. I refocused my energies, um, and doing volunteer work again with the skill set I have, it's very specialized. • • • So I work with a group called Catch a Fire, which • • is basically a clearing house for, um, nonprofits to find volunteers. So over the last three years, I've done about over ninety 90 with • them, ranging • • • • • • • from, um, helping do Mission Vision value statements to Excel training, • • to doing data analysis to doing all these different • • things. And I've met all these different non profits across the United States. I've actually worked with some guy in Australia, worked with a couple of folks in • • • • • • Africa. It • • really seemed to be focusing more on • • that, hoping to get to retirement, um, at some point. Right. Because I think that • • • • will keep my mind • • active.

Right. And when you go outside and so you ride your bicycle • • • • • • now on the trails and paths, um, around Chicago, trying to stay off the road so you don't have to fight with the cars.

Right. So they converted old rail lines around here a long time ago. So there's a whole network. The one near me is called the Prairie Path. • And it's limestone paved • • • • • • and it's just a much safer • • ride. Back in my heyday, when I was really, um, going at it, I would ride on the streets, but I usually drive a half hour west of where I am to get more towards the countryside where there is less • • • • traffic. All it takes is one guy not paying attention • • and you're in a world of hurt.

Yeah, no, it's • • true. I'm riding more and more offroad myself, but I still do get out on the roads. We're very fortunate • • • that you can be rural very quickly when you're outside Roanoke, Virginia, as opposed to Chicago. • • • • Right. We're a small • • • • city. Virginia's Blue Ridge is how, um, we're now marketing this. • • • • • • • •

Region.

And you've got a grandchild. • • • • • • • • • • Um, four years ago I had none. Now I have six.

Holy cow.

So, grandchildren changed the way I, uh, look at • • • • life, that's for • • sure. And, um, I'm sure that that's the same for • • • you. • • • • •

Absolutely. He just turned one. And so, • • • • • • • • • • • • um, we've actually, uh, made going over the last three weekends. We're looking around, it's snowing outside. Let's see if our daughter wants to visit her. So we go over • • • • there, we eat lunch, and then we play for a couple hours until he's ready for a nap. So that's just really refocus what's going on. • • • • And he's at an age • • • where he's very active, like my oldest daughter was. And • • so it's like playing with my daughter again. He wants to fly around the room. And so it's just a lot of fun doing that. • • So it's the point. Now he recognizes me and as soon as he sees me again, he wants to start flying around the room. So it's a lot of fun. But I will tell you, making that little kid fly around the room, I'm gassed after it's over. Right. • • • So I think again, that's part • of dealing with how my body reacts to stuff. Now, before I could do anything, • • • • and I'd be • • • • • • fine. • • • • •

Yeah, it's frustrating. You, uh, can't do what you once did. So they call sarcaidosis the Snowflake disease because it impacts each of us • • • • differently. I've also run the Boston Marathon.

Um, Congratulations.

Thank • • • • you. I just always thought of myself as, uh, the guy that would always be fit and would always be healthier • • • • • than a certain large percentage of the people walking around beside me. • • • And I guess now I think I was arrogant to think that because sarcodosis just knocks you back a step. Two steps, three steps. • And it's hard to realize that • • • • • while playing with my grandchild tires me • • • • out.

Yeah, • • • • • • • • • • absolutely. Again, your form of, um, it is • • • much. I think each form is so unique, and I was so lucky to have my aspect of it addressed through the Ablasian. So it's sort of like. But every time I go out, I am looking at that watch going, Is my heart gonna play nice today or not? So it's always in the back of your mind, is what's going to • • • • • • • • • • • • • • • • • happen? To answer, I think, your earlier • • • • • question, it's always there in being thought of.

So your doctor, Dr. • • Spoon, said that your sarcoidosis is not active, but he described it as simmering. Can you tell us what that is? Because I hadn't heard that before, but I think there are times when that's been my • • case.

Right. So the last Pet scan I • • • • • • • had, he said, um, great • • • • • • news. There's no stark activity, uh, in the • • heart. There's no stark activity in the • • lungs. But as I look at your lymph nodes, they're • • glowing. And he said, it's not • • active. So let's just call simmering. It's • • there. • And let's not mess with your current medication • • regime, because ideally, they would love to taper you off. But I've had more than a few doctors tell me that if • • • you let the Sark flare again as you taper your meds, it comes back with a vengeance. And I really don't want vengeance, because vengeance, in my case, means I get more scarring on my • • heart. And then I got to rinse and repeat the medications, the ablaze again. So if I have to live with the • • medication regime I live on right • • now, so be it. And I think I've heard a couple of people on your • • • • podcast. I've just got to learn to live with what's being done. But in my choice with the cardiac Mans, I had another alternative, which was the ablasian. • Right.

But you don't want to have to do another ablaze, • • • • • because even if that works, your heart will never • • be what it once. • • • • • • • • •

Was.

Every time they do that, it hurts your heart a little bit more. Right. And every flare you get hurt your heart a little bit more • • • permanently. • •

And the phrase heart transplant has been used in front of me before, and that • • • • just scares me. • • • • • • • • • • • • • • • • • And again, I don't want to ever get there, • • • • but it's out • • • • • • • there so whenever they do an Echo cardiogram, they're looking to ejection fraction. And I'm like, • • • • • • borderline. Okay. And they're like, if it drops to a certain point, then, • • uh, the next consideration • • • • • is heart transplant. I'm like, let's not go there • • • • • • yet. Let's see what we can do without before we get there. • • •

Right. So you get up in the morning • • • • • • and do you work from • • • • home? What do you do? Do you go to work?

I'm in a hybrid schedule. So two days at home, three • • • • • • • • • days at work. • Um, and, • um, three days are downtown Chicago. Uh, so if you ever been to • • • • Chicago, the Blue Cross building is right across from Millennium Park. If you ever went and saw the • • bean. I can see that from my office. Wow. • • • • • • • • • • • And the Metro, which is the, um, commuter training. You take that in • • • • there. We actually have a bus that runs from this train station, um, to the building. But I walk. I walk every time. So it's about twenty, 25 minutes. And again, I like being • outside.

Yeah, I love the bean. The bean is so • • • • • • • cool. It's a sculpture that's shaped like a bean, and it's about the size of a small house. Is that fair?

Yeah, that's fair.

And it's just you see a mirror reflection no matter where you walk around it or under it or • • • • • • whatever. I love the bean. That's so cool. Um, and so you're, uh, walking twenty, • • • • • • 25, um, three days a week, and you're feeling fine, right?

Yeah, they're back. So I'm walking fifty, 50 • • • • • • minutes. It's feeling okay. • •

Um, • • • • • • • • • • • • • • awesome. You mentioned your relationship with God before we were talking, and other people have brought that up. Have you become more or less religious, or do you look at things in a more philosophical way? • • • • • • • •

Now I'm going to go • • • towards no. But I also will say I continued, I'm continuing my spiritual journey. I'm continuing to try to • • • • • • • • • • • understand my faith, • • • um, about that. So right now I'm reading something • • that's • • where there was a group • • • • • • • • of priests, um, that actually did a critical evaluation of, • um, the four Gospels, trying, uh, to say, is this something that Jesus really would have said? And it's • • • • • really in depth. So I keep on exploring things. They might not be popular topics to talk about, but I'm just trying to • • • explore my • • • • • • • • • • faith. If you think about the volunteer work, I • • • • • • do think Christianity, a lot of it is about giving • • • • • • • • • • back. So, yes, I've been doing more and more and more of • • • • • • that. • • • • • But, • • • um, it's something I continue to explore, and it's just to • • me, it's fascinating. I think the underlying • • message • • • of Jesus, • • • • again, • • • • uh, love your • • neighbors • • • • • and love God above all. I think that's a great message, and it's hard to practice it sometimes loving your neighbors, but it's great to aspire to that. • • • • So I'm really interested in understanding about • • • that.

Got you, Jack. Is there anything else you want to add at this. • • • • • • • • • • •

Point. • • So this is an um aside. • • • • • • • • So after I had this cardiac • • • • • • • • • event every year since, two, um, thousand and one, I've gone on a canoe • • • trip. I don't know if you heard of • • • • • • • • • • • • Quetico.

Yes, I've been there three times.

Okay. • So for the • • • • • listeners, if you've heard of Boundary Waters in • • Minnesota, it's a place where there's no motor boats. It's canoes only quadico is the Canadian version of that. It has bigger in • • size and it may allow fewer people • • in. So I've been doing quadico trips, eight day, seven night trips since two 2001. And when nine • • • 911, we were in the • • • • • • • field. Nine 911, I what happened • • • on • • Tuesday? And, • • uh, uh, we were in the field. We had no • • idea. And when we came out of the field, we were • • • • • • • • • • told they like playing jokes. And you come back like, there's something like the camp ran out of hot water and the guy that picks us up • • • • says they • • • bombed the towers in the Twin Cities. • • • Um, I'm like, who's going to bomb Minneapolis St. Paul, right? Yeah. And so we thought it was a joke. We didn't believe it. And it took a phone call • • • home and for my seven year old daughter at that time to say, yes, they bombed New York to make it • • • • • real. • • Anyway, I go up to quitaco every year. And after this cardiac event, I said, I'm going. And my wife is like, you're not. I'm going. • • • • • • • • • • • • • • And two months before a • • trip, I got a blood clot. So with • • • • • this device, the ICD pacemaker, um, they run wires, uh, through your veins, down to your • • • heart. And typically, if a blood clot shows, it shows up • • • early. But mine showed up late. So now I'm on blood • • thinners. And if you know about the credit • • • • • • • code, there is no seven 711, no emergency care. You're all by yourself.

There's no communication.

Correct. Unless you have a • • • cell phone, right? Yeah.

When we went, there were no cell phones, no walkie talkies, • • nothing.

And • • so I'm going. Even with this heart condition • • • • • • • • • • and my reaction to Amy odorone • • • • • and the blood thinners, I'm going, which • • is • • • fairly not smartly, dangerous. A month before I went, I'm owing the grass • • • • • and come in and take a shower. And I'm washing myself. I'm, um, like, what's • • • this? I had a • • • • • hernia. • • And so I'm like, come • • • • on. So I bought one of those • • • • girdles that pushed it in. So I, um, went to Quidico that year with. You • • did? Yes. With all that going on. And my wife was not pleased, but I'm like, I got to go. This is sort of, um, like my annual • • • release. So I thought you would appreciate that • • story. It goes back to what I need to, um, be. • • • • • • • • • • • • • • • • • •

Outside. One of my bucket list things is to get back • • • • • • there. It's been over twenty 20 since I went, but I went three years in a row with a local group of guys and the fishing is the best fishing I've ever had in my • • life. But it's rigorous because we would paddle, I think, about one 110 miles where they dropped us off. Then we would sort of paddle back to a pickup • • • point in the canoe. And then you Portage between the Lakes. So you're carrying your canoe, you're carrying your backpack, you're looking out for • • • • bears, and you just basically fished your way to the, um, next campsite. Is that how you guys did it?

Absolutely. • • And there's • • something people like. It's just canoeing. Well, the portagne is what kills people. So I brought a couple of newbies this year, • • • and the portages just kick their butt.

Yeah, well, they can be a mile • • • • long. Some of them are very short. You hop for there's four, 400 within the Quittico Wilderness.

Right.

And only, as I recall, only two, 200 of even have names, and the rest of them are just regarded as large puddles. They're not worthy. But you go • • • • from body of water to body of water to body of • • • • • • water, and you follow your map and, • • um, hope you don't get lost. I had some scary moments, but I can't believe you're able to do that with • • • Sarcardosis.

Yeah. So I'm still doing it • • • • • • • • • and made it through that trip. Uh, okay. But, • • um, that's what I want to • • • • • • do. And you've talked about it, I think, on your podcast several times • • about you got to get back • to what feels right. Your body might not be one 100% the way you want it, but you got to get back to what you want to • • do • is make the effort. So I just keep on making the • • • • • effort.

Do you carry the canoe yourself when it's your, um, turn on the. • • • • • • •

Portage? This year I did, yes. This year I, um, canoe because I had a solo canoe, and I did • • • a solo paddle because I was with two other guys, two new guys, and I couldn't find a four fourth.

I • • • • sold. Okay. Call me. What month do you go? • • •

Typically, I typically go after Labor Day just because the mosquitoes are down. Okay. And that's a good time to go. And again, if you're going back there at some point and you want a suggested • • • route, I've been through all the entry points in quadico, and I've hit most of the major paths, so I definitely have suggestions or, uh, tell you where it would be fun to go.

Okay. Yeah, we'll have to talk. We'll start boring people really fast if we get into a deep dive into this remote Canadian • • • • • wilderness. • • • • • But, yeah, I can't believe that I'm, um, talking to somebody else who's actually been there, because when I bring it up, • • everybody, they have no idea what I'm talking about. Sometimes boundary waters mean something to people. Right. But critico, you fly in on a float plane, they drop you, uh, off, and • • then it's fantastic. I love it. Well, Jack, thank you so much good luck at the critico this year. If you're planning, uh, to go in September again. • • Absolutely. Okay. All • right. And I wish you all the luck in the world with fighting sarcodosis. • • • And thanks, uh, for fighting the good • • fight.

Alright. Uh, thanks and I appreciate you let me tell my. • • • • • • • • • • • • • • •