Hello and welcome to Open Heart Surgery

with Boots. I am your host, Boots Knighton. And thank

you so much for spending a little slice of your day

with me and my guest today. And I want you

to know that I don't take it lightly that you choose this

podcast, that you likely find this podcast helpful

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these stories. I put my own heart and soul

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about every Tuesday, Wednesday depending on how I'm

feeling, to tell you about the latest episodes and to give

you a little bit of a window into my heart journey as well, because

it is not over for me. But let's get to

today's guest. I am welcoming John

Toivonen from.

Oh gosh, Warba. You told me how to spell it, John.

Warba, Minnesota. And Warba is

apparently the center of the world. John, thank you

for joining us. Thank you. Thank you very much. I'm very

honored to be on your program, very honored to be here and with

your listeners and hopefully they can get something out of my story.

Of course they will. And the 50,000 foot view

of you, John, is you're lucky. I want to

rub you for good luck. A lot of people do. Yes,

because you have been through quite a

challenging last five years, particularly the

last two. And you have had to

date three open heart surgeries and what's

miraculous is that you continue to live

a life wide open, full of love,

and you are able to work, you are able to

continue to. I don't know if the word

thrive is how you would describe it, but you're here and

you're able to clearly tell your story. And I just want to say

all that for the listeners because at times when we listen

to your story, it's going to be like, oh my gosh, how is this guy

doing it? And you're doing it. Exactly. And

that's kind of the best way to describe it is I just do it.

I just trust in, trust in the, in the people around me

that they're telling me the right things and I listen to my body

and that's how I make it through every day. Bravo. Let's get to

it. So 2019, how old were you

then? I was 41 years

old. Okay. Okay, so let's,

let's just dive in and you're going to give us the

30,000 foot view, let's say, of your story. And then along the way

I'm going to interject with a few questions. Absolutely. We're

41 years old with you, 2019, and you

start to feel really bad. I, yes, I

had gone through the whole day without really

any symptoms. The only thing I had mentioned in the morning was that I couldn't

clear my throat. That was the only thing that stood out in my wife's

mind. I coached football. I went to our restaurant

that we own to pick up the kids, ate dinner, had

a beer, got in the truck, getting ready to leave, got the

kids in there. And I said, you know what, I'm gonna go back inside to

say goodbye to my wife. I grabbed the door handle and it felt like somebody

just cut up my chest with a dull butter knife. And 15

seconds later I was laying face down on the kitchen floor dead

from cardiac toponade at that point in time. So I had an air of

dissection and the timing with the ambulance where

the hospital was. The people that were at the hospital

that helped me and the surgeons that helped me in

Duluth once I got life flighted there, saved my life and

it, it was amazing. So I went through 11 plus hour

surgery, repaired aortic ascending aorta and

also a mechanical valve as well. I had a St. Jude's

valve and that was first installed

and Woke up about

24 hours after the surgery and the ICU still

alive. And it was pretty amazing to hear what had

happened to me after I had basically left

the hospital in Grand Rapids. So I

want to go back to the butter knife

sensation. So, like, you just felt, like, up the center of your

chest, right? Yeah, from. Right. Like, top of the stomach all

the way up. And it was just weird. And I'm like. I thought it was

heartburn at first, and I started to feel like I was

gonna fall over. And so I'm walking into the kitchen,

and like I said, I just went face down on the

floor. And it's a miracle you got back out of the car and you weren't

trying to drive. Well, that's. That's the thing is that. And my kids were pretty.

My young kids were pretty young at the time. Had I just hopped in the

truck, it would have happened right there. I would have never gotten out of the

truck. And I was behind the restaurant where nobody really goes. That's

where I parked. And so I'm lucky. I'm lucky that I

didn't close the door, because that door automatically locks. I left it open. You know,

there's so many things that factored into the timing with it that I'm still

here. Wow. You are not the first guest I've had

on where there's all these little, tiny miracles

along the way. I mean, it. It is. I just have the

chills thinking about that. For you and your kids and your wife.

And tell us real fast about tamponade.

So basically, the way it was explained to me, because that's what was the

official diagnosis. I still have the paperwork from when I was

released from the emergency room. I guess essentially, it's just that

periocardio sac around your heart fills with blood or liquid or whatever,

and it just stops your heart. It constricts your heart. Okay. And so they actually

put in a drain to drain that

at the emergency room, and then also had

blood going into me. So they would drain it, and then they

transfused it at the same time. So that's the only reason why I stayed alive.

Okay, Right. Because you had dissected. And so then

the blood was. Okay. Wow, what a dumpster fire. But

11 hours later. So you had your

aortic root replaced. Right. Help me remember. Your

aortic root. Your. The dissection repaired, and

then the aortic valve. Correct. And then I also had a

bypass. Oh, the bypass. An artery that

stopped working. And so the right side of my heart

was essentially dying. So they had to do

that at that time as well. And so that's where the

first part of the journey starts, essentially. Yeah, exactly. And I

think anybody that is probably in listeners and maybe even yourself can

agree that usually after the surgery, it's just

complications from there on out, experiencing because of the

trauma, because of what happened, and because of the surgery, because it's such

a big ordeal. And so that's what happened to me

essentially, into my second open heart surgery. Right. And now

we're in Covid and we're just about. We

were just about. We were. We were about.

My second open heart surgery was February 7th of 2020,

and the COVID shutdown happened March 13th.

For everything that's like our restaurant shut down,

you know, sports venues shut down, everything shut

down. But into the second open heart surgery, that bypass that I

talked about, I had been feeling not so good

since January and finally went to see my

cardiologist, and she's like, you don't look good. You need to go to

Duluth. You're leaking. Something's going on. Well, they thought it was one

thing. They thought it was my repair leaking. And they were just going to go

in and put a stitch in and a simple procedure. And they

decided to go through instead of go through the growing, which I'm glad they

didn't. And they went through open heart, and

they got in there and found that that's not what was

happening. It was the artery that they used to

bypass. The old artery had stopped working,

shriveled up, and spit clots in my. Around

my heart, and the old artery

actually started working again. So

miraculously, I survived the unsurvivable number

two. And I'm just thinking,

like, you know, I think of terms of a

car, and you have all these different pipes taking, like, oil

places and gas, and. And it's just like you were just

sputtering along. And I'm just thinking of, like, oil clumps or something,

just getting into the engine. Yeah. And you're just

literally sputtering along. And the car is like.

Right. But this is life threatening. I know. That's. I know. I. I

picture something like that, too. Like, just. It's just like going like this. Yeah, it's.

That's pretty funny. I like that. I totally picture that same way

myself. I'm trying not to make light of it, but I'm also. My poor

little brain, like, this is so messed up. And

I. And again, thank God you went to

Duluth. And I. Another side trip. I just want to take

temporari. Really is. When you heard those words,

how did you find the energy to be like, okay, here

I go again, back to the ER like, it. Yeah, it was

pretty tough I mean, I was. I was. I was batting a

thousand going to the ER and getting sent to Duluth, there for a while.

And so, like, they won't even. So now, you know, it's gotten to the point.

It got to the point where my local hospital won't even deal with

me. In fact, my cardiologist says, just come straight

to Duluth. Just come here, because I don't want you to deal

with them. I want you to just be here. Because I'm only about an hour

away, and it's. St. Mary's Essentia is where I

go. They just built a brand new, beautiful facility there in Duluth

and great surgeons, great, great cardiologists. So.

Yes. And making light of my story is what helps me get through, so

I'm glad that you were able to share that with me. So. And by the

way, my local cardiologist said I'm a zebra to her, so. I hear

you. And, yeah, I have to go elsewhere now, too. And it's.

It. I don't know about you, but I've had to grieve that and

be like, oh, why can't I just be like a horse? You

know, Like, I want to be a horse. I know. Like, yeah, yeah. If I'm

going to stay in the hospital, why can't I just stay locally so people can

come see me or whatever. Exactly. Because we need our community around us

or. I know half the doctors, though. Half the doctors will come in and see

me and say hi. You know, that doesn't happen. I got to go. It alerts

now, so. And actually, it's. We've even bypassed that now, so.

Yep. Before we lead into the third open heart surgery, part of my

complications was they had put a probe in my

arm to apparently measure your blood pressure while

you're. Arterial. Blood pressure.

Yep. And so when I got done with the second

open heart surgery, because I had. They had to take me off Warfarin for a

few days. I was doing Lovenox shots, which

Lovenox is like, you know, heavy blood thinner. Yep. Well, it kept

my blood so thin. Yeah. So I was putting something on

a shelf one night, and all of a sudden I felt like my bicep just

cramped. And after a couple hours of being

in extreme pain, I finally go to the er. That was the first time

they had the lights on for the ambulance to take me to Duluth because

they were extremely worried that I was going to lose my arm. Had compartment syndrome

in my arm, and the artery tore

in my arm, so I can't get blood work on that arm

anymore because it's a grafted artery. And I just don't want to deal with

weird stuff happens to me. So. Oh yeah, I want to.

I want to keep it safe. So that was, you know, a part of the

journey too, that, you know, for five weeks I couldn't move my arm. And they

were concerned that I wasn't going to have it anymore. They might have to amputate

it. So fortunately came out of that just fine.

So. But then moving on to the next part of my story, which would

be the third open heart surgery, the beast, as I like to call

it, I guess I started to come down with a sickness in

April of 2023. And I thought it was

the hold on. So you made it a couple of years. I made

it a couple of years. I was, I was in a good spot. I was

in a really good spot. I mean, my health was

good. Everything was stable,

no problems. And all of a sudden I come off a weekend and Monday

I just, I got a fever and chills and I thought I had the flu.

I even went to the doctor, which wasn't my doctor. I should have reached out

to my cardiologist, but that person agreed too. You're like, yeah, I think you have

the flu. Well, then finally, when I couldn't take it anymore, after about three to

four, you know, four weeks, I went to the ER

because I just was not feeling great. And based off the tests

that they did, I went to see my cardiologist the next day and she's like,

I can't believe they didn't send you to Duluth. You need to come here now.

Like, you don't have a choice. Like, you have to come here. And

so rushed over there. And that's when

they found that I had an infection. And specifically

the infection attacked my, I like to say

fake parts for, for the story, but for my

aortic sleeve that was replaced and my

aortic valve, my mechanical valve. And I actually, I actually

developed a 1cm abscess on the root of

my. Of my valve as well. So it

was non negotiable. Surgery was the only

option. And my surgeon, who was really good,

said, I can do it, but I think you should go to

Abbott Northwestern down in Minneapolis. Is there

a level one trauma and transplant

place? And they also have ECMO there, the

ECMO machine, which is what I had to be on. And for those out there

that know ECMO is not really

survivable, it's about 50% people come off

of ECMO and I was on it for four days. So they had

to go in and do what they call a redo. So they had to take

out all those fake parts, and they put cadaver

parts back in. The problem with the surgery and what made it 20

plus hours was when they opened my chest, it looked like

hamburger from all the scar tissue. In fact, my surgeon

said that was the stickiest chest he's ever seen. I don't know

necessarily what that means, but I'm assuming it was bad. At one

point in time, they actually pulled my pulmonary artery, and he had to massage my

heart to keep it going. Lots of different

complications. That part took 11 hours. And then the surgery

for the redo took another seven or eight. Actually, I

think it was eight plus even. They had to scrub the inside of my heart,

get all the infection out, put those cadaver parts in, and here

we go. And then they left my chest open for four. For those

four days, while I was on ecmo, they went back in a couple times and

just tweaked a few things. And that surgery was on a Tuesday. And by

Sunday evening, they woke me up, and I was in the

icu, and I had bad dreams, and I had ICU delirium.

And it was bad. It was very, very bad. I was in a very,

very, very dark place during that time. You're like the third or

fourth guest I've had on that have spoken specifically

about the delirium. And it's almost as if

that's more traumatic than the surgery itself. Yes.

There's things that I still have not told my wife that happened

to me during that time. The things I saw.

Basically, like, in a nutshell, what made it so bad is that

I saw about 12 people in my room, and all of them were waiting

for me to die so they could harvest my organs. And it

was awful. I was talking to them. I don't know who was.

Who was real and who wasn't. It was bad. It was a very, very dark

situation for me. Um, I had people that say, oh,

yeah, this person saw, you know, kitties

and rabbits, you know, bunnies running around. I'm like, well, that's not what I saw.

Yeah, lucky them. I wish I would have saw that. Yeah. Yeah. And I

still. I still, to this day, haven't dealt with it. I have a friend

that's. I don't necessarily think I need a

psychiatrist, but I have a friend that's a life coach that I really trust that

I want to share that information with. And I'm ready. Okay.

And I'M ready to tell my story about that too. So that's a whole nother

story for a whole nother day. Because that, I mean

that, that's going to take up probably an hour. Just me going through everything that

I saw and it's, it's. That was

probably the most traumatic part about it, about the whole experience. Well, and you didn't

have any control, right? You're. You're stuck. I didn't you. And

you can't, you can't escape it. You can't self soothe. You

can't distract yourself. You can't turn on a TV on your. Like,

there's like. Or go on a walk. There's like all these things that keep you

prisoner to your mind is what I'm. What I'm hearing.

Yep, you are. You were. I was a prisoner in my own mind,

in my own room. Y. And it was awful. And I, and I hear

actually now because I shared. My sister. My sister's friend

was the basically manager of the fifth floor, which is the

cardiac wing at Abbott Northwestern. She came and talked to me and I told her

about my experience and I don't know if it's because I told her about that.

But now to now today they have people that come in, like

visitors or volunteers that'll come in to when people are

experiencing that and sit with them and talk with them and play cribbage with

them and get their mind off of it. Good. So I, I mean it's a

good change. It's something because the nurses and doctors, they're like, ah,

I'm not dealing with that. That's. It's ICU delirium. Get

over it. You know, they see it all the time, you know, and a. No

fault to them. They have to desensitize themselves from it. But yeah, it's, it's

good. So that part of the experience was, was terrible.

But, but I improved quick, I really did from being in the

hospital. I mean I, I was. I couldn't walk for several days. They

wouldn't let me. They wouldn't let me get out of bed by myself. I had

to be hoisted up and put on a chair. And for

anybody that's ever had that, that's a completely like devastating

experience. You feel helpless that you

can't even. I can't even stand up. So.

So that was, that was a humbling experience. It really was that part of it

because I just wanted to get up and go. I wanted to go outside. I'm

like, can we go outside? It's Nice. There's a balcony out there. It was

beautiful. You know, that time of year was May. You know, I'm. You know,

it's. Spring is here. I want to get outside. And now they wouldn't let me,

so they had shut my kidneys down during it. And so I was on a

machine that would, you know, basically change, do what your kidneys

do. And so they had to wake them up. So I did have dialysis

twice and started working again. Kidneys are good.

Kidneys are functioning good to this day. And then it was pretty quick after

that that I got out of the hospital. So I had my surgery on a

Tuesday, and I was

out of the hospital the following

Thursday. I think that's incredible, considering it was

pretty quick. That's impressive. Yeah, it

was. It was pretty quick that they got me out of there, and I wasn't

ready. I can tell you that. I was not ready. I

got home, and the most devastating thing when you've had

one traumatic experience from a health perspective

is when you have another. You now know what it takes

to get back to where you were. And it's like, the

best thing I can explain is it's like. It's like chasing a ball down

a hill, and you just can never get close enough

to grab that ball. That's what it felt like. It's like, I'm never gonna get

there. Never gonna get that ball. That spun me into

a deep kind of thought, like, man, I just. This is

gonna be terrible. And it was. You know, I'm not gonna sugarcoat things.

It was. It was. It was not a good time. And,

you know, there's. That was touch and go for months. In fact, my color didn't

even return until probably five, six months later. People

that had saw me, like, the week before had said, oh, my gosh,

your color is back. You look so much better. So it was pretty

grim there for a while. I couldn't even do cardiac rehab because.

My ask about that. Did you go into that? Okay?

I had to quit because I couldn't even do it. I just. Wow. And

we were trying to figure out what was going on, and then when we finally

got testing done, right heart, cath

tee echo, you know, all the whole

work. Figured out that my right side of my heart was in failure.

I was functioning at about 29 on the right. On the right

side of my heart. My valve. My mitral valve was

failing. I was severe to. I was

moderate to severe regurgitation, and something was going to have to be

done. But I'm not going to survive another open heart surgery.

So off to Abbott we go again to discuss with people.

And that was that. That was kind of the touch and go for

a while. The T word came out. Transplant. Because they

just knew that I wasn't going to survive another open heart surgery. They could hope

they could do it catheter wise if they had to replace my valve, but they

weren't confident that they could do it. So I did

some testing there. After about a year, I did

a right heart cath with exercise. And for

anybody that's done that, that's a horrible experience because you can't be sedated and you're

laying on a surgical table completely

awake. That is awful. I just did it a month ago and it

took me like two weeks to emotionally recover. Yeah. Oh, my

gosh. My blood pressure before we went in was so good.

And I get in and I get white cone syndrome. And then my blood pressure

skyrockets to 160 over, you know, 90. And so

they're pumping me with nitro tabs to try to get my blood

pressure down. And then they gave me some more blood pressure medication.

Finally, they were okay with it. I was on that table for an

hour waiting for the test to start. Yeah. While they were cath, I

was cath and everything else, it was right through my neck and, and everything. And

then after it was all said and done, all that blood

pressure medication just rushed to me and I was

so dizzy. Yep. And of course, I

didn't eat after midnight. And this was. It was 5 o'clock

in the afternoon before I even got a little bit of a morsel of snack.

So it was. Yeah, it was not a good experience. But we got a

baseline, figured out that things were okay. And then

come the next testing, echo, follow up a

few months later, found out that my valves have

improved. First time I've ever heard of when

I get news from a doctor, it's always like, oh, it's going downhill. Yeah. But

this is the first time I got. Well, no, it's going the other way. Your

valves are fine. The leakage is back to moderate.

We don't have to do surgery anytime soon. Your heart.

At my heart, I think my right side of my heart was at 44.

Incredible. So we're good. The ejection fraction rate was good.

And he said, your. Your things are good. So ever since then it's

been. It's been positive. But there's still the thought in the back of my mind

that no matter what, that my path may

still lead to that, because the right side of my heart will never

recover the way. The way it was. Right.

And like you said, you're batting a thousand. So every time they

say go to. Yeah, you gotta go elsewhere. It's. It's always

bad news, and it's just like, can a guy catch a break? Which is funny

for a guy like me to say, because I've caught a ton of breaks. Right.

I've died six times. I've flatlined six times, and here I

still am. But it just seems like I just want to

be able to go three years without surgery now.

Yeah. And we're getting close. I feel you on

fingers crossed. So how are your wife and kids?

You know what? They're great. My wife has been

so wonderful in the whole experience. She

understands my daily struggles. You know, like, a lot of

times, I don't want to get off the couch. I don't want to do anything,

and I get a lot of leeway there, you know, and my

kids, they were affected by it. You know, I have four daughters. The two older

ones were, you know, I think 12 and

15 at the time, or 13 and 15. So, I mean,

they were when I first had my first episode, and.

But my. My youngest daughter, she still sleeps. Still sleeps on the

couch. She can't sleep in her bed. Because when I got home from the hospital,

the first time that's where we slept was everyone slept in the living room with

me while I slept in my chair that I'm sitting in. By the

way, this is whenever I. Whenever I hear or

see on Facebook, what are the necessities after open heart surgery?

Electric recliner, number one. Number one. I.

This is my recharge station. This is where I go when I don't feel good.

Plug in. I've slept many. Slept many, many, many,

many nights in this thing. So it affects them still to this day, like,

I know it does, they get nervous. Like, my daughter. Like, my

wife was on the way home, and there was an ambulance going to Duluth,

and my daughter had to run in the house to make sure I was here,

even though she asked my wife, you know, is that dad?

And. And she said, no, no, he's home. And she ran in

here to make sure I was here, because that's. I mean, that's how

traumatic it is for them. You know, that's. A lot of people

don't. The survivors. We have the easy part. We just

lay there and not die. Right. I can't agree. It's our.

It's the people that support Us. And I'm talking even bigger

than my family. The people that I have met through Rock

from the Heart, you know, an organization that I work with and volunteer with, the

people I've met through a hope. Just all these connections that

I keep making, and it's just a powerful experience when you

can make that connection with someone. I always encourage

anybody to reach out to me. Email, phone. I don't. I.

I will give the world my phone number. Just reach out to me

and let's talk, you know, because we can't do this

alone. Nope. That's the whole point of this podcast. You

know, it's like, it's. It is one of the

hardest thing, knock on wood. I've not had cancer. I have

severely broken a leg, so I can speak to that. But

I. From what I can tell, heart. Heart stuff is

one of the hardest roads you can walk because it's what keeps us alive, our

heart. And it's such a complicated organ, and so many things can go

wrong with it. I also like to say so many things can go right with

it. Yeah. And so my greatest

hope for you is you get to keep your beautiful heart. I mean, heck,

y'all been through enough as it is. I'd have you to have to

part ways. It's mine. I want, like, this is this.

I don't. I don't want someone else. I already got somebody else's

valve in an aorta, and who knows? If they had aortic

disease, I might be destined for another aorta dissection. So that's

the other thought process I gotta think about, is like, what if this were

aorta was just like my last one, you know? So

I want to keep my heart because even though it's damaged,

it's mine. Exactly. It's what makes you you, and it's

what you love with and laugh with, get scared

with, like, all. All the things. It's right there with you.

Well, John, thank you so much for your

generosity of coming on the podcast today to share your story.

I will have in the show notes help folks can find you any

other parting words of advice or

wisdom. You know, it's a marathon, not a sprint.

I take it day by day, hour by hour, listen to your body

and know that there is so many other people out there that are

feeling just like you. And everyone's story

and everyone's journey, even though they may be

similar, it's a different experience for everyone.

Not everyone has had the complications that I've had. Not everyone's had the

complications that you've had, the next person's had. But we all share

that common thing with that we have been through this experience.

So please, like I said, reach out.

I'm more than willing to talk. Oh, wow. I've made a

new friend. You're just such a lovely soul. Thank you, John.

Yes, you too. Yes, thank you. I appreciate it. Yeah. And

for my listeners, do get in touch with John. And if you haven't

yet, do be sure to subscribe to this podcast wherever

you get podcasts, because I don't want you to miss any more

episodes. And if you liked this episode today

and you think can think of someone who would benefit from listening to it, please

send it to them. And if you even have another

second, I would love it if you consider leaving a review.

It's how people find this podcast. So, John,

thanks again and thank you to all the listeners spending a

slice of your day with me. Me. I love you. Your heart is your

best friend and you matter and you're never

alone. Be sure to come back Tuesday after next. We're in the every other

week rhythm where I will bring you another story of hope and

inspiration.