Episode Transcript
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(00:02):
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
(00:24):
and I hope that you find something, some hope from listening to
these stories. I put my own heart and soul
pun totally intended into choosing my guests
and I want to make sure that every minute you spend with
me is worth your time. So please be sure to send me
some feedback.
Bootsheheartchamberpodcast.com
(00:48):
yes, that was the former name of the podcast and I have not switched my
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me a second to get back to you, but every bit of feedback, positive
or constructive, is so welcomed.
And I want to also give a special shout out to
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(01:10):
Amy to thank and Lucinda,
Robin, John, Kim,
Bill, Sarah, Kristen,
Katie, Rose, Diana. I want to say thank
you to those who are helping me me keep this
podcast afloat financially. I sure do
(01:32):
appreciate it. And if you are looking to support
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and if you become a paid supporter of this podcast,
you can join in on the zoom meetups that happen on the
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amazing discussion of us coming together over our hearts.
(01:54):
So thank you for considering. Lastly, if you
haven't, be sure to sign up for my newsletter. You can see that in the
show Notes as well. And I send out a newsletter
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
(02:16):
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
(02:38):
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,
(03:02):
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,
(03:23):
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
(03:46):
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
(04:08):
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
(04:30):
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
(04:53):
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
(05:14):
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
(05:36):
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
(05:58):
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
(06:19):
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
(06:39):
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
(07:02):
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
(07:23):
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.
(07:45):
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
(08:07):
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
(08:30):
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
(08:52):
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
(09:15):
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
(09:35):
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
(09:57):
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
(10:18):
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.
(10:42):
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,
(11:03):
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
(11:25):
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.
(11:46):
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
(12:09):
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.
(12:29):
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
(12:51):
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
(13:13):
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.
(13:35):
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
(13:55):
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,
(14:16):
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
(14:38):
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
(15:01):
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
(15:23):
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
(15:45):
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
(16:05):
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
(16:28):
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
(16:49):
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
(17:12):
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
(17:34):
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
(17:56):
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.
(18:18):
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
(18:40):
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
(19:02):
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
(19:24):
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
(19:46):
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
(20:08):
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,
(20:28):
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
(20:49):
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
(21:10):
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
(21:33):
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,
(21:55):
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?
(22:18):
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
(22:41):
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
(23:03):
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
(23:25):
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
(23:47):
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
(24:09):
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
(24:32):
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
(24:53):
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
(25:15):
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
(25:38):
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?
(26:00):
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
(26:22):
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
(26:44):
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,
(27:07):
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
(27:29):
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
(27:51):
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
(28:13):
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
(28:35):
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
(28:57):
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
(29:20):
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.
(29:43):
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
(30:04):
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.
(30:26):
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
(30:49):
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
(31:11):
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.