Latest / Coffee People Podcast / Replay: A Coffee With Matthew Hankes, Heart Transplant Recipient

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Replay: A Coffee With Matthew Hankes, Heart Transplant Recipient · Coffee People Podcast

0:10
Good morning and welcome to Coffee With.
0:13
I'm Ryan Walt, and this is the new podcast where I have a cup
0:16
of coffee with someone who has a good story to share.
0:20
This episode, the very first, is being broadcast across all the
0:25
roast. West Coast platforms including
0:27
other podcasts like Coffee Smarter and Coffee People.
0:31
We're doing that for two reasons.
0:33
First, we want to get the word out that this new podcast
0:36
exists. Secondly, I think it's a really
0:40
good interview and our guest today has legitimately changed
0:43
the way I look at the world. You can also find the Coffee
0:47
With podcast on roastwestcoast.com or wherever
0:50
you listen to great podcasts. Just search for Coffee With.
0:54
You can also find any of the links we reference in today's
0:57
show in this podcast's show notes and in the newsletter,
1:01
which is found at roastwestcoast.com.
1:04
However you got here today, I'm glad you did because this first
1:08
episode of Coffee With features my conversation with Matthew
1:11
Hankus. Matt is a physical therapist
1:14
from Post Falls, ID. He's a pretty normal guy who
1:18
enjoys being outdoors, spending time with his family, including
1:21
his wife and two children. And he recently went through
1:24
something truly incredible. He had a heart transplant.
1:29
I know the weight of that may not come through in podcast
1:33
form, so I'm going to say it one more time.
1:36
He had a heart transplant. His chest was opened, a bum
1:40
heart was removed, and another more, better heart installed.
1:44
All the veins and ventricles and who knows what else were
1:47
connected before finally the surgeons closed his chest.
1:52
That is mind blowing to me in so many ways.
1:54
I'm grateful that Matt is here to share more about his
1:57
experience leading up to the event, what the day was like,
2:00
and how things look from the other side.
2:04
One other thing Matt enjoys, at least I think he does, is the
2:08
occasional cup of coffee or a beer on the porch with this
2:11
cousin's husband. Full disclosure, that's me.
2:15
When I was just thinking about making the show, I made a
2:19
considerably long list of potential guests to launch with,
2:22
but Matt and his story were the one that made me want to take
2:25
the leap. So pour yourself a mug and have
2:29
a coffee with me and Matt Hankus, heart transplant
2:32
recipient. Mr. Matt Hankus, welcome to this
2:42
inaugural episode of Coffee With You being the width.
2:46
I've been mulling over the idea of this show where I talk to
2:49
people outside of the coffee industry for a minute, but I
2:53
wasn't really sure who I should talk to, who should be the first
2:56
guest. I was thinking someone who could
2:58
make an impact, you know, like an astronaut or a famous
3:01
athlete, political activist, someone like really important.
3:04
Then in the middle of the night, it hit me, what if it was
3:08
someone who was just normal? And I say that not as a slight
3:13
or to reduce your stature, but someone who had gone through
3:15
something extraordinary that has given them, you know, an
3:18
opportunity to share a story that could have, you know, some
3:21
real impact. And you were the obvious choice.
3:24
Your family and someone I care about.
3:26
And I know a little bit about your story.
3:28
I also admit that my thought process wasn't as cohesive as I
3:31
may have just implied. But either way, it got me to
3:33
where we are now, which is me having a cup of coffee with you.
3:38
And I should start by asking, are you drinking coffee?
3:42
And can you even drink coffee right now?
3:43
And I'll get into the why of that in a minute.
3:45
Sure. Yeah, well, I'm, I'm back in the
3:48
coffee game, which is great. I was drinking NA coffee for the
3:51
last year because I couldn't have the caffeine related to
3:54
some heart problems. So I'm back into full gravity.
3:56
So it's nothing fancy, but we're just Folgers and Dunkin' Donuts
4:00
people, so. Well, I am drinking something a
4:04
little bit fancier. I'm drinking a cup of Kraft 42
4:08
roasters out of British Columbia near you.
4:10
Kelowna, BC. You're up in Idaho.
4:13
They sent me this and I made it in a clever dripper this
4:15
morning. And I did an OK job of it.
4:17
I want to get into some basics. One What's your name?
4:20
Where do you live? What do you do?
4:23
All right, Well, my name is Matt Hankus.
4:25
I'm 40 years old. I live in Coeur d'Alene, Idaho.
4:28
I'm a physical therapist by profession.
4:31
I'm a husband, I'm a father of two girls.
4:35
My daughter Hannah is 6 and our daughter Elise will be a one
4:39
years old here next next week so.
4:42
Yes, Hannah is a an absolute riot and I believe has lost some
4:46
teeth recently which has caused some some pretty intense family
4:50
video chats. Yeah, there was a lot of buildup
4:53
into that tooth falling out, and then it finally happened.
4:55
So quite the event. Let's start with one really
4:59
important fact of why we're talking today, which is you
5:01
recently had a heart transplant. They opened up your chest, they
5:05
took one heart out, they put another one in.
5:08
How long has it been since the actual transplant?
5:13
Yeah, so I had my heart transplant on February 4th of
5:16
this year. So I am 9 1/2 weeks out from the
5:19
transplant surgery and it's been an amazing journey since, you
5:25
know, to to put it very simply, it's an engine swap.
5:28
If we can, if we can dumb down one of the most complicated
5:30
surgeries in the world, that was an engine swap.
5:32
So they took out a a disease heart that I was born with and
5:36
put in a donor heart that is in much healthier.
5:39
Shape that will. Serve me hopefully many many
5:42
years to come. Well, you said it was a diseased
5:45
heart that you were born with, but you didn't know your parents
5:47
didn't know you were born with this this condition which I
5:52
believe is called ARVC. Can you tell us what that is And
5:55
and then when did you find? Out there was a problem with
5:58
your heart. Yeah.
5:59
The acronym ARVC is arythmogenic right ventricular cardiomyopathy
6:03
and and to break that down in terms arythmogenic means that it
6:08
has the ability to cause arrhythmias or abnormal heart
6:11
rhythms which has led to when I had this where they implanted A
6:15
defibrillator to control that rhythm.
6:17
The RV is right ventricle. So the more focus on the right
6:20
side of the heart, which is where the electrical wiring if
6:23
you will, lives and then cardiomyopathy uses to a blanket
6:26
term of heart disease. The type of.
6:29
Condition that it is is a cardiomyopathy.
6:30
So ARVC is what I've dealt with since I was 15.
6:34
I passed out in a high school football game, which ultimately
6:38
was a ventricular tachycardia or one of those arrhythmias.
6:41
And if those aren't? Stopped either through just.
6:45
Pure luck, which happened in my case.
6:47
Or they're converted with like an AED.
6:50
Oftentimes the person will die from that event because their
6:54
heart rate is going so fast. There's no oxygen to the brain
6:57
on paper or an electrical rhythm.
6:58
It's 4 or 500 beats a minute and at that point your heart just
7:01
quivers and there's no ability to move.
7:03
Blood so if that. Were to go on long enough
7:05
without correction that could be fatal.
7:08
Wow, I'm not. Assuming that you remember that
7:10
moment of collapsing, but have you heard what that was like for
7:14
people there? You said it was during a
7:16
football game, so it was a public place.
7:18
Yeah, a few coaches that kind of saw me drop and were the first
7:21
people out there. It was a in a very rural part of
7:24
Wisconsin, so there wasn't, you know, the Friday Night Lights
7:26
with the ambulance crew available and things like that.
7:29
So just again, grace to God, I came out of a tachycardia that
7:34
should have had a different outcome.
7:36
And ultimately my parents thankfully we're a little late
7:39
finding the field, so they didn't see that first quarter
7:42
event, which I was grateful for then.
7:44
And I really still am, because that would have been pretty
7:46
traumatic to see a kid just drop.
7:48
So. I would imagine it would have
7:50
had a lot of impact on your coaches and your teammates and
7:52
and kind of anyone in that area. Do you remember what sort of
7:56
emotion kind of went into finding out?
7:59
I'm sure you were confused and scared at the time, but when you
8:02
found out you had this ARVC, did you know, Did they tell you
8:05
then? I mean, this would have been in
8:07
the 90s that you would probably need a heart transplant someday.
8:11
How did that impact you as a teenager?
8:14
Yeah, at 15. The world couldn't hurt you, You
8:16
know, you're invincible in terms of this was a little thing you
8:19
shrug off. You know, it happened in the
8:20
fall and I was looking forward to getting ready for baseball
8:23
season, which was my primary sport.
8:25
So certainly didn't realize the impact or the magnitude of a
8:28
condition like this in your life.
8:29
So on that aspect, probably downplayed the severity of it.
8:32
But I didn't know at the time that management was medication
8:35
and in my case a defibrillator to stop those rhythms.
8:39
And then either my parents got the conversation right, drifted
8:42
over my head. But ultimately this will lead to
8:44
heart failure where the muscle itself weakens aside from the
8:48
rhythm issues. And that can shorten the the
8:51
longevity of your native or you know, born heart in that sense.
8:56
A defibrillator in the 90s and it's essentially like a.
9:00
Electrical pack that shocks your heart back in the movement,
9:03
right? Am I understanding that
9:04
correctly? Yeah, it's implanted.
9:05
So I mean, a lot of times I use the term pacemaker that people
9:08
understood that part more, but it was implanted into my chest
9:12
with a wire going into my heart that it would both sense a
9:15
tachycardia happening and then could deliver a shock through
9:17
that wire into the heart to essentially do what the paddles
9:21
do on any medical show you've ever watched, but from an
9:23
internal standpoint. Do you could you explain maybe
9:26
what it feels like for that to happen?
9:30
Yeah, The first time it happened was it was in a gym class
9:34
setting with, you know, 20 guys fooling around.
9:37
So I thought someone threw a basketball square in my shoulder
9:39
blades and hit me. But then I realized it was one
9:42
of those events that had happened.
9:43
And it was kind of this mixed feeling both of impending doom
9:48
because you're going to rhythm where the lights are going to go
9:50
out because, you know, you're going to faint, but also needing
9:52
that shock to prevent that from happening.
9:54
But the fear. Also of.
9:56
There being that's pretty painful thump in your chest.
10:01
That's just wild to be thinking you could be walking along and
10:04
all of a sudden something hits you from the inside.
10:06
I'm assuming that a 90s defibrillator wasn't as small
10:10
and efficient as maybe a more. Recent one was.
10:14
Correct. Yeah, it was like the 1990s boom
10:16
box. You just lug it on your
10:17
shoulder. Wasn't quite that big, but I
10:19
have, I have actually retained all four of them I've ever had
10:22
in me and there is a little bit of a decreasing size over the
10:25
last 25 years. So it's a weird thing to collect
10:28
for people. But I thought it was kind of
10:29
part of my journey. And I've asked for them after
10:31
every replacement if I could retain them.
10:33
So they have shrunk with time, but you know, they're very life
10:37
saving things. That is the really the safest
10:40
way to keep someone alive that has a tachycardia history.
10:43
Wow, little off topic, but I just learned yesterday that if
10:46
you have a limb amputated and there's not really anything
10:50
wrong with the limb that was amputated for some other reason,
10:52
you can ask to keep the limb and they will provide it for you.
10:56
I'm not sure how you store it just in the fridge next to that
10:58
first fish your kid caught. I'm not really sure, but it is
11:01
possible to ask for it. The world of.
11:03
Taxidermy has come a long ways. You just never know.
11:08
Life, life then goes on. You have a defibrillator.
11:11
You're you're a teenager, did this as you started getting
11:14
older and you're going into college and you're starting more
11:17
serious relationships. Eventually you're talking about
11:20
having kids with your partner. Did this change choices you made
11:24
as you got? Older or did that kind of 15
11:27
year olds like this isn't going to hurt me.
11:28
I don't want to acknowledge it. Attitudes sort of continue
11:31
throughout. Or how did it affect you as you
11:33
were moving through the stages of life?
11:36
Yeah, I think, I think I've, I've changed my course in two
11:40
specific areas in terms of activity.
11:42
I I did kind of rein in my intensity level of exercise.
11:46
You know, it's playing high school sports and into college
11:48
was playing baseball, which is baseball is baseball, which I
11:52
love, but by way of was it worth the risk and the concern of
11:55
getting shocked playing sports? That was an easy decision to
11:57
give up because I had several events where I try to stretch
12:00
stretch a single into a double and that was enough to kind of
12:02
Fast forward the rhythm to throw it into a tachycardia.
12:05
So I'd come up from a slide at 2nd and also I'd feel my heart
12:08
racing and then three seconds later a big thump in my day was
12:12
over and at some point I probably age 2021.
12:15
I said, is this worth it? And, and just said, I'm going to
12:17
change how I how I play. And it was more, I would say
12:21
lower intensity stuff with just general cardio exercise and
12:25
skiing where I could control kind of some of those things.
12:28
So it was a decision made to just not have that pain and that
12:31
risk in my life from an activity standpoint.
12:34
And then I would say the other area too that I've modified at
12:37
the time was looking at my career.
12:39
I went into college for athletic training, which is sports
12:42
medicine helping athletes. But that can involve emergency
12:45
life saving things on a field. And ultimately I realized with
12:47
my condition that could progress throughout my career.
12:50
I didn't want to ever let my inability to get across a field
12:54
for an injured kid jeopardize someone's safety or health.
12:57
Again, working in football games at the professional level,
13:00
player went down and, you know, we were able to get to him at
13:03
midfield, which wasn't a long run.
13:05
But that was one of those events where it really dawned on me
13:09
that if I'm not able to get there, I could put someone's
13:12
life at risk from that. And that's when I shifted a
13:14
little bit more into the physical therapy field, which is
13:16
where I am today. Just from a controlled
13:18
standpoint that I'm in clinic and there's not some of those
13:21
immediate responses that would be needed based on my heart
13:23
condition that could be. Dangerous for me or others?
13:26
And you mentioned the professional level.
13:28
I just wanted to throw it out there that you were at one time,
13:31
I believe, an intern for the Green Bay Packers, probably the
13:34
greatest football team in the history of the game.
13:36
You you had that experience and you saw athletes at that level
13:39
at any point during this kind of early phase where you're
13:42
starting to make these truly life changing decisions about
13:45
career and what you know, you know what sports you're going to
13:48
play. Is there part of you that is
13:50
angry or resentful about this or confused?
13:52
Like why is this happening to me or or did you just kind of
13:55
accept it? This is my life and I'm moving
13:57
forward. I think that's one emotion I
14:00
never really had was anger or like you said, resentment about
14:03
the condition. I even with this, I feel like
14:06
I've lived and I'm living such a good life that I've been blessed
14:09
with things that I would say even in spite of a condition
14:12
that is really life changing, I gained so many good things from
14:15
it. I mean, I how the stars align
14:18
that I changed my profession that let me meet my wife and
14:21
start a family. Like that's an upside of what
14:22
would have that happened from making that switch.
14:26
So even what I would consider the little things related to
14:29
this condition, which clearly become a huge thing by way of a
14:32
transplant, I still it's would have called us a net gain and
14:35
everything was really good that this brought into my world.
14:39
I mean, that's, that's great to say today, but I feel like in
14:42
the moment it's a little bit more of like keeping an eye on
14:45
the ball, like, hey, this, this could turn into something good
14:47
someday. But it's, it's impressive to
14:49
hear you say that. But I'm also sitting here going
14:51
like, I don't think I'd be mature enough or, you know,
14:54
emotionally mature enough to say in the moment when I couldn't do
14:57
something I wanted. That well, this will probably
14:59
work out. Yeah, and maybe there was an
15:02
element of naivety where I'm just like, this will be fine,
15:04
everything is great again or that invincibility that comes up
15:07
being a teenager, but very few things in life has prevented me
15:11
from doing honestly, I've I've modified things to still be able
15:15
to ski. I mean, there's many other
15:17
conditions out there that have far greater impact on their
15:20
daily function. And I think I either was blessed
15:24
with how how minimally impactful my condition was compared to
15:30
others courses with ARVC, but I still just went for it.
15:33
I mean, I I ski, I hunt, I hike, I do things that probably some
15:37
electrophysiologists would shake their head at and say you should
15:40
pick up chess. But ultimately I think I'm glad
15:42
I did what I did and that course can't be rewritten.
15:44
That got me to the point of transplant.
15:46
A few years ago, well, I should start by saying, you mentioned
15:50
at the top of this that you were born with this condition, even
15:52
if you didn't know it, your brother also had this condition
15:55
and went through a transplant several years ago.
15:58
So you had the ability to kind of see the transplant process up
16:02
close or at least you know through him and communicating
16:05
with him. How did that impact you or how
16:07
did? That prepare you for what you
16:08
would eventually go through. Yeah, so my brother is this week
16:12
actually three years out from his transplant.
16:15
I've called Jesse my lead blocker since I knew that I was
16:18
on the list for transplant. I've seen him go through it,
16:20
I've seen the challenges that came with it for him, and I've
16:22
seen the successes in his life since.
16:24
You can read about anything online of someone's experience,
16:27
but I think it pulls so much more weight when it's your
16:29
brother that's gone through it and they know if we share
16:32
parents. So because of that, we can see
16:34
how it affects mom and dad and. This is their second goal of it.
16:37
So this was, I think a different scenario and many different in
16:40
many different ways. But ultimately, they've been
16:42
through this once with a son that's gone through
16:44
transplantation, so they had an idea of what's coming ahead.
16:49
When you were put on the transplant list, when do they
16:52
make that determination where they say, look, you've gone as
16:54
far as you can go with this heart, we got to do something.
16:57
How do you go from not being on the list to being on the list?
17:00
And then how long were you on the list?
17:03
So 2022 was your Everything had changed.
17:06
So it happened quite abruptly. I was even in January, I was out
17:11
hunting and knee deep snow up, up some hills.
17:14
So I was working pretty hard physically in that condition.
17:17
And then in February when I got sick as a result, I struggled
17:21
with a flight of stairs or walking with any pace across the
17:24
grocery store parking lot. So it really went in the tank
17:27
quickly. And they, they alluded to that
17:29
at the transplant center that when people are younger, you're
17:32
going to have systems around the heart that work well.
17:35
You can compensate for a long time until you're so sick that I
17:39
say the ball rolls off the Cliff.
17:40
At that point, I just got really sick.
17:41
And that was the result was how physically limited I was, what I
17:45
felt like in a blink, but it's been a long time coming.
17:47
So February of 22, I was hospitalized.
17:50
And as a result, the I'm at the heart transplant team at Sacred
17:53
Heart in Spokane, WA. And the conversation essentially
17:56
was. You have a very sick heart and I
17:59
think it would be in your best interest to start listing now
18:02
for transplant because one of the elements of having this
18:05
heart be yours is how long you've waited for it in tie
18:08
break situations. The person that's been on the
18:10
list longer would get the same heart if it could serve two
18:13
people that are at the same tier of waiting.
18:17
You say tier of waiting, and I just want to clarify that that
18:20
refers to essentially like somebody who's been waiting
18:22
longer, maybe in a different level of health, a different age
18:26
bracket, a different location even.
18:28
I mean, what am I missing there? That's right on.
18:31
So in the heart transplant world they have statuses one through
18:35
6. Status 1 is someone that's
18:37
hospitalized on mechanical assistance that is very, very
18:41
ill that. Could be having a bad outcome in
18:43
days to weeks if they don't get a heart and that course is down
18:46
to #6 Where someone has heart failure, it's on their map, but
18:50
they're not imminently in need of a heart so they're just on
18:53
this waiting list accruing time for when a heart could become
18:56
available. I was a status 4 for the entire
18:59
duration of my waiting list, which was 10 months until I
19:03
received a heart. So status 4 is the the sickest
19:06
or most critical person in an outpatient setting.
19:09
And I never, one of my goals was to never become a status 3, not
19:12
that I had a lot of control in it, but what that would mean as
19:15
you're likely admitted on medications or some other
19:18
supportive measures that would require hospitalization.
19:21
And my goal, internal drive, whatever you'd like to call it,
19:25
was to be with my family until the day I got the call.
19:28
I didn't want to have this be any greater impact than it
19:31
needed to be up until the transplant.
19:33
That's ultimately what transpired was dropped my
19:36
daughter off at school in the morning, went to work and was on
19:38
my way to pick her up when I got the phone call that we have a
19:41
match for you. I mean, that's just sounds like
19:45
insanity to me that you you don't know when this call is
19:48
coming. It could come at any time, but
19:49
you kind of have to just keep living your life in the moment
19:52
when that call comes in. What is that moment like?
19:55
Is it relief? Is it fear?
19:58
Is it because everything is going to change?
20:00
I think the process from the way I understand.
20:03
I understand it from you and just from some of the reading I
20:04
did before the show is. That you get the.
20:07
Call and that's like this transplant is happening now,
20:10
today, tomorrow, like within the next 24 hours or so because that
20:13
heart that they are putting into you is only viable for so long.
20:17
And if it's not going into you, it's going to go into someone.
20:19
Else is that that correct? And then how did that call?
20:22
Feel for you when you got it in the car.
20:25
That's it. And I feel that this.
20:27
Transplant Group did a great job of preparing you for the.
20:30
The medical and the physical sides of it, and they.
20:33
They try to do their. Best to help with the emotional
20:35
side, but that's an internal battle.
20:36
I think knowing that when literally when your name is
20:39
thrown in the hat of a waiting list, it could happen that night
20:42
if somehow the match process lined up for you.
20:46
Or you could wait two years and that's really the internal
20:49
battle is every five O 9 phone number I got.
20:52
That's the area code for Spokane.
20:54
Holy cow, could this be it? And at that point, you know, the
20:57
phone had rang and you jump. And some of their rules are you
20:59
never turn your phone off and you never go out of service
21:02
without communicating it with us.
21:03
And where we live in the mountains, if I go with 30
21:06
minutes in two different directions, I lose cell signal.
21:09
So we were essentially grounded to stay within 30 miles of home
21:13
for the 10 months that we waited, just because I didn't
21:15
feel that there was a weekend. Trip that would justify going
21:19
off the list if that could have been your weekend to get the
21:21
call. It just was of such a great
21:24
priority that we made ourselves available every day for the 10
21:27
months. You said you got the call.
21:30
While you were in the car. I mean, I don't know how you
21:33
don't like run into a stop sign or something at that point.
21:36
They tell you? Yeah, they tell you to pull.
21:38
Over breathe. Take it easy.
21:40
And I grabbed a pen and paper in my truck just like I jot down
21:43
some notes because I knew I would.
21:45
This would blow over in the history of my experiences.
21:48
I wanted to document what I could in terms of the nitty
21:50
gritty details. I have expected you to say you
21:53
reached into the back of the truck and grabbed a Miller Lite.
21:55
This is Idaho after all. It is that, you know, I think.
21:58
Showing up a little junk for your transplants and bad
22:01
starting point. Well, you wouldn't get that bad
22:04
off of Miller Lite. I want to talk to you a little
22:06
bit about this transplant donor list.
22:08
You said that they recommended you throw your name on that list
22:11
or get your name on that list because how long you're on it
22:14
impacts, you know, if you're the next one up essentially, which
22:18
I'll be honest, when, when I first said that my, my response
22:21
was like, well, that's kind of a little political strategy there.
22:24
Like, you know, should I go on it before, like a day before or
22:27
a week before I probably could. Or a month, you know, whatever.
22:31
But what is this list actually a list of?
22:35
And is it this list available to the public?
22:37
How do you get on it? I'm assuming it's just
22:39
essentially 2 lists. You know, people who need hearts
22:42
and people who are willing to give one if the opportunity
22:45
arises. Do you apply for it?
22:47
Did they decide if you go on it for you, what is that that like?
22:51
Yes, so each organ transplant site and of course I'm speaking
22:56
heart specific based on my experience.
22:58
So the heart transplant team in Spokane does a work up and says
23:01
this patient in our eyes qualifies for transplantation or
23:05
does not. And thankfully I was someone
23:07
that was a suitable candidate to receive a heart.
23:09
So when they finish their work up, they.
23:11
List me on that one to six statuses and this is where
23:14
you'll begin. So I was a status 4.
23:16
So there's an organization that handles the allocation of the
23:20
heart and that's UNOS and that's United Network for Organ
23:23
Sharing. So they're essentially the
23:24
people that control the list in terms of when a heart becomes
23:28
available into the pool, who gets it?
23:31
How does that happen? So they utilize a lot of.
23:33
Different features in terms of matching criterion, right?
23:36
A common one. Is blood type my body would
23:40
resist a heart that is the wrong blood type.
23:42
So that would certainly disqualify an available heart to
23:46
specific candidates because it wouldn't match And then it goes
23:50
down from there in terms of size of the donor's body for the sake
23:53
of chest cavity needs to be a near match because that will
23:56
have a role and will that heart fit in the recipient's body.
24:00
And I only know a very, very slight amount of the matching
24:03
characteristics. But the other big one too is
24:05
antibodies, which is in your life.
24:07
What has my body fought back against?
24:09
It would now create antibodies that would resist if a donor
24:13
heart has the same antibodies. So I was really lucky in the
24:16
sense that my antibody panel was 0, meaning I've got none in my.
24:19
Body. So based on that I can take any
24:21
rich heart and I know of another person in the program that had a
24:24
90% antibody panel. So only one in 10 hearts that
24:28
come available theoretically would work for him.
24:31
So that was a blessing in the sense of my body was really
24:34
readily available to accept part with any antibody profile.
24:38
So UNOS would have me entered as a candidate in their database
24:42
and then when a heart becomes available they enter everything
24:45
into the database and that does the smart thing on the computer
24:48
side and finds potential matches.
24:49
The way it. Works in terms of allocation is
24:51
they start nearest the location of the donor.
24:56
A big factor in the success of transplant is how long does it
24:59
take to go from donor's body into mine.
25:02
And obviously, so that step could be essentially removed if
25:05
they did it in the same city where the donor body is living.
25:08
So it's this concentric circle of rings how they look at
25:12
distribution. So the way they start first is
25:15
let's just pick San Diego where you're located.
25:17
So if there was a donor in San Diego, they would start in the
25:20
San Diego area with status one and two people, the sickest
25:24
people in that location. If there's not a match with that
25:26
or a program does not excited to accept that heart, then it would
25:29
go to one and two in a bigger geographic area.
25:32
If again, at that point no one needs it, they go back into the
25:35
status as threes and fours in your area.
25:38
So it's kind of this. Shrinking and expanding range
25:41
going all the way out to 8 hours away potentially that could
25:44
utilize this heart. And that's how someone that
25:46
would be a status 6 may get a heart as it it's played this
25:49
game and no one locally needs it and it's expanded to a less
25:53
severe, less critical person. So that's kind of how the the
25:57
game, if you can call it that, is formulated to get the heart
26:01
to the right people that are the sickest.
26:03
I am immediately thinking of strategies.
26:05
If I were a person in need, would I move closer to a place
26:08
that is near a surgical center? You happen to live near 1, which
26:12
is coincidental. But you do.
26:14
Would I potentially look at places where there's more car
26:17
accidents, You know, what would be the the situation if you're
26:20
that desperate like to think about it, I would imagine there
26:22
are people who who do make that choice and say, well, I'm going
26:26
to move somewhere closer to this facility because my.
26:30
Odds will get better. Yeah, exactly.
26:33
Locally, one of my colleagues, her uncle lives nearly on the
26:37
Canadian border in Idaho. And they're they're in really
26:41
remote spot where that would be tough.
26:43
So he ultimately chose to list at Cedar Sinai in LA.
26:45
So he lived in an apartment for four months in Los Angeles just
26:49
waiting for his call to come. And thankfully he got it and
26:52
he's back in beautiful North Idaho doing great.
26:55
But he made that decision to go into a larger metro area where
26:58
theoretically more donors become available.
27:00
You just look at the statistics of where people are congregated.
27:03
And sadly, more deaths are going to occur where there's 7 million
27:06
people, where there's 1,000,000. That's the option they chose to
27:10
take. We, you know, a combination, I
27:12
think of our gut feel with this program, as well as how it was
27:16
less impactful on the life of a family with two little kids or
27:19
at that point, you know, we were still pregnant making these
27:23
decisions. So it was looking ahead.
27:26
Is this where we want to be? And I think it was a great
27:28
decision as this has played out. But we just felt that we were
27:32
confident that we would get a heart in this location without
27:34
having to play the game and moving to a bigger city.
27:37
You're on the recipient side, obviously, who is on the donor
27:43
side of things. And I say that a little bit, you
27:46
know, tongue in cheek. I thought I was on a donor list,
27:48
but I recently made sure that I was and I know.
27:51
So I know how that goes and I'll share that obviously after the
27:54
show and links and everything. But who are the people that are
27:57
on that donation side that ultimately were the reason you
28:01
got a heart, and how did they get there?
28:04
So one of the most common ways you can get signed up is through
28:06
your local DMV. That's a very straightforward
28:09
process to make the decision to be an organ donor.
28:12
Another website that is very user friendly is donatelife.net
28:17
and that has easy links to getting yourself signed up and
28:20
available to become an organ donor.
28:21
So that's kind of the process of if you're deciding to make that
28:25
choice to donate your organs, if you were to to pass away, that's
28:29
the channel that you would go about it.
28:31
So the gentleman that passed away made the decision to become
28:34
an organ donor most likely prior to his accident or whatever led
28:38
to his passing. So when I'm.
28:41
Going to interrupt you. I'm sorry, I don't mean to to be
28:44
rude, but you say presumably you don't know who this person is.
28:47
They don't tell you, right? And that's one of the, I would
28:51
say the backbones of UNOS is to maintain integrity of the
28:54
donor's family is that there's never any direct way for me to
28:58
communicate with them to express loss or thanks or any which way
29:03
or to reach out to find out how things happen or how they live
29:05
their life. That's, and I think a very
29:07
important part of what UNOS does is to provide that anonymity to
29:10
people that maybe are on the fence about donation as one
29:14
reason why they might say, let's just keep this totally
29:16
anonymous. And they're essentially the
29:18
intermediary. If I would like to write a
29:21
letter to the donor's family, I write it through UNOS and they
29:23
would deliver it to them in that fashion so that it's, there's
29:27
always that safety net of never having to speak directly until
29:31
they can make that decision if they'd like to or not.
29:33
And I ultimately respect whichever way they like to move
29:36
forward. But it's still as part of my
29:38
healing process, I would like to thank them for the sacrifice
29:42
that they made by the decision to donate an organ and just
29:46
really express. My sadness jointly just for the
29:50
loss of a family member. Before I so rudely interrupted
29:54
you, you were talking about the donor who gave you your heart
29:57
and that presumably he had made a choice to donate an organ and
30:01
we had said that you can. You can get on the list through
30:03
a website likedonatelife.net or at your DMV.
30:08
But you also mentioned his family and just their
30:11
involvement, presumably if the situation were complicated on
30:16
their end that they also are making a choice or they are also
30:19
having to come to grips with the fact that part of him is going
30:22
to continue on somewhere else hopefully.
30:25
And they may not know where that is obviously as well.
30:27
Now that you have this new harden you for the last 9 1/2
30:32
weeks, is that something you're kind of continually aware of?
30:36
I know obviously that things change over time and you're
30:38
still going through this process of of recovery, which we'll talk
30:41
about in a minute. But.
30:43
How often are you thinking about the fact that someone else gave
30:46
up this? Heart for you.
30:48
I think it's on a, on a daily basis, I think of the gift I've
30:52
received and it can be something really little.
30:54
It can be a, it can be a profound moment, you know, from
30:58
doing experience with my family, since it's like I'm living
31:00
because of someone else's heart and, and ultimately they are
31:05
keeping me alive to just to continue to do what I'm doing.
31:10
It can be something as small as. Right now I'm in cardiac rehab
31:13
and I feel like, you know, I'm trying to progressively
31:16
strengthen and get my my body back to where it can be at its
31:20
optimal cardiovascular standpoint.
31:22
And there's been times on the treadmill or an elliptical where
31:25
I'm working out and I'm tired. I want to quit.
31:27
And it's something where. Hey, this is you're on bonus
31:31
time in life because you've received an organ when you could
31:35
have been gone. So don't don't quit on something
31:37
when that's easy out. Just continue to work for this.
31:41
I want to get back into the the process of the heart transplant.
31:44
You get the call you had to Spokane, to the heart transplant
31:47
center. You know, your family's going
31:50
through a bunch of logistics trying to figure out where
31:52
they're all going, what's happening when.
31:54
How much of the science of this process did you understand or is
31:58
it possible to even explain? I mean, we talked about it being
32:00
an engine replacement, but it's a little more complicated than
32:03
that. I'm not expecting you to explain
32:05
it the way a doctor would, but when you went under, did you
32:08
understand what was happening? What sort of complications could
32:12
have stopped it from being successful at?
32:14
My understanding is there's a chance they could have gotten
32:17
you on the table and decided we're not even going to do this.
32:20
You don't know what's going to happen for sure.
32:23
What was that like being there at the hospital getting ready
32:26
for this to happen, not knowing, you know, where is this going to
32:31
go? Yeah, I mean, they, and they do
32:33
prep you for that in terms of this can be 99% ready to go.
32:37
And there's a there's a last minute curveball that that stops
32:40
the process. And I appreciate their their
32:42
strict standards to say we find something that would say this
32:45
isn't an optimal match and we need to to pause on the
32:47
transplant. And they call that a dry, excuse
32:50
me, they call that a dry run in the profession where you may
32:55
even get to the point of being sedated and they have the heart
32:58
next to yours on the table. And they say, pause, there's
33:02
there's a valve issue or there's something that would say this
33:05
isn't a good fit. And at that point they would
33:07
just bring you out of sedation and say, we're sorry, but we
33:10
found something right before we were going to put this hard in
33:12
you that wasn't a suitable fit. And that would be, I think,
33:15
devastating to experience it. But I think once that the
33:18
rawness of that event, cool, I think you'd be thankful that
33:22
they ultimately are still looking at your best interest in
33:24
mind. And this, as hard as it was,
33:26
wasn't the best fit. That's something they.
33:29
Have you plan on to at least think through in case it were
33:32
happened to happen? But ultimately in my case, they
33:34
prepped me and said, you know where the the heart is on its
33:39
way. We're going to get you ready.
33:40
And then that's the last I remembered from the the front
33:44
side of this. Procedure.
33:46
Do you remember what your last thoughts were before you fell
33:49
asleep? I feel like ideally you'd want
33:51
it to be some profound amazing thing.
33:53
But there's also part of me that's like you're thinking
33:55
like, oh man, I should have mailed that letter.
33:57
You know, like. Yeah, there wasn't anything big.
33:59
I'm sure it was annoying over what Aaron Rodgers was, you
34:02
know, going to do with his trade.
34:03
Request at the time, but no, I, I was just honestly of all the
34:07
emotions I felt, I was excited. That entire event from Friday
34:10
night when I got the phone call saying that we're going to do
34:13
this really early on Saturday morning, I was excited for this.
34:16
Because I knew a how long I'd waited, and that is a tough
34:21
process. And then secondly, just knowing
34:23
what the future is going to bring with a healthy heart and
34:25
how much better I'll be. So I was.
34:28
Excited all the way. Through that weekend going into
34:31
it. When you woke up, what was your
34:33
feeling? I'm assuming it the first time
34:35
you wake up, you're probably a little out of it, but you know,
34:37
what was that experience like of waking up and knowing that there
34:40
was this new thing inside of you and you know, you do get this,
34:45
this additional bonus time. The first.
34:48
Thought I had. Ultimately was when they
34:49
attempted to extubate, which means take the breathing tube
34:53
out of your mouth. And that was probably at 11 at
34:56
night or 1:00 in the morning. I don't, I wasn't able to roll
34:58
over and look at the clock, but I know it was late at night of
35:01
the surgery. But but ultimately I remember
35:03
them saying, Matt, try to breathe or pulling this tube out
35:05
of your mouth. And even in that level of
35:08
medication in my brain, I, I was excited because I knew that they
35:12
wouldn't have put a breathing tube in me if they didn't do the
35:15
surgery. So even that, you know, drugged
35:18
up, I was excited because I knew this surgery had happened.
35:20
So at that point I knew I had a new heart.
35:22
And then obviously the cognitive steps took a while for me to get
35:25
there the next morning, but just was really even in a heavy state
35:30
of sedation. I acknowledge I had a new heart.
35:33
And that was a really interesting thing when I look
35:35
back, that that kind of was the switch that connected the dots
35:38
for me. That said, you got a heart.
35:42
Once you have the heart, it's not over, right?
35:45
I mean, there's still obviously the healing of just the surgery
35:49
and any surgery of healing, but there's also a chance that the
35:52
heart doesn't take, so to speak, right in my understanding that
35:56
where you could, they could put it in, everything seems right.
35:58
But the body says this is not mine, I don't want it here.
36:03
What do I do? I mean, is that something that
36:05
you're continuing to deal with or that that you were worried
36:08
about, They were worried about? I assume they wouldn't be
36:10
worried about it necessarily if they actually put the heart in,
36:13
but it is a possibility, right? Yeah, rejection is the biggest
36:17
risk inherent to a transplanted heart for the rest of your life.
36:22
Even when they have gotten really, really good at matching,
36:25
you know, in terms of the blood types and the antibodies and
36:27
things like that. I mean, they're essentially
36:29
perfect on paper, but there's still the your body's natural
36:33
immune defenses that want to, they want to fight back.
36:35
And whether you have a splinter in your finger, you have a cold,
36:38
your body's going to fight back from an immunologic standpoint
36:42
to say this isn't me, it's foreign, and then get it out of
36:45
here. So that's the challenge is what
36:49
to what level can we give medication to suppress your
36:52
immune system to, to stop that fight back, but then also not
36:58
expose you to other illnesses and things that's going to let
37:00
you get pneumonia and and kill you from pneumonia in three
37:04
months. Like that's the the delicate
37:05
game that they play from a medication standpoint.
37:08
And that you just said that for the rest of your life this is a
37:11
possibility. And so you're always going to be
37:13
playing this game of, like, suppressing your immune system
37:16
so it doesn't get angry at the heart inside you, but also
37:19
doesn't fully expose you to, like, a cold that might be just
37:23
a cold for someone else, but might be more for you, right?
37:26
Yeah, it's like you need to, you need to re reduce your immunity,
37:30
but then also not let down your defenses so much that every cold
37:34
could, could be very, very dangerous.
37:35
So and that's I think ultimately moving forward is your biggest
37:38
issue to manage with a transplanted heart is the
37:40
immunity standpoint and and decisions you make in life that
37:44
three months ago I totally took for granted.
37:46
The things now are cautions or even things I have to totally
37:49
avoid. So that's that's really the long
37:52
term success story of your heart is can you keep it?
37:55
Intact and and comfortable from a rejection standpoint.
37:59
Now that the surgery is over, we're a couple months out.
38:03
What is your health status today?
38:04
And then what does your recovery look like over the next year and
38:08
how does it slowly transition into just your normal life?
38:12
So the management after transplant is so much of it just
38:16
monitoring like you mentioned regarding the rejection status.
38:19
So for the first a month, I had weekly biopsies where they
38:22
actually take a small piece of heart tissue and then can look
38:26
at it from a cellular level. Is there any rejection going on?
38:29
Labs are a very, very common part of this where they can see
38:32
some things. Lab markers would indicate
38:34
rejection, but then they also do biopsies of the heart tissue
38:37
itself and that frequency is decreasing.
38:40
So now I'm down to once a month of being biopsy where they
38:44
actually take heart tissue and look at it.
38:46
So that's how the first year goes in terms of frequent
38:49
biopsies to make sure that this heart is taking into my body and
38:52
that it's a good match and their medication is appropriate based
38:56
on suppression so that it's not again, leaving the door open for
38:59
something to get me sick, as well as not being so low that
39:03
the heart decides to be rejected by my immune system.
39:06
So that's the challenge moving forward.
39:08
That's like you said is forever. But it's, it's all new to me
39:11
this first year. So that'll be something that
39:13
will be a continual challenge. And I just want to kind of
39:16
reference this, but you're not on lockdown the way you were
39:19
before, trying to wait for the heart.
39:21
But you are also in a state of where you're at risk in this
39:25
first year. And so you're not currently
39:27
working, I believe. And like your family is kind of
39:29
in a little bit of a bubble. Like we all, everyone listening
39:32
knows what that's like, at least to some extent after COVID.
39:36
How are you guys? Handling that time now, I mean,
39:39
I don't want to be what's the word I'm thinking of?
39:42
I don't want to be disrespectful of it, but it kind of maybe
39:45
gives you a chance to just be together as a family.
39:47
But we'll also going, well, there's a reason for it.
39:52
Yeah, COVID gave us a three-year practice round of existing in a
39:55
small sphere of the world and living in a bubble.
39:58
Like you said, we're because my immune system is at its maximal
40:02
level of suppression right now. Safety is probably paramount at
40:06
this point. So they give a medication the
40:08
night before my transplant to essentially delete my entire
40:12
immune system. So that's an IV the night
40:13
before. And they said that takes about 3
40:15
months to wear off. So I'm still in that window
40:18
where I'm at my most susceptible.
40:20
Up until about week 12 and then at that point it drops a little
40:23
bit, but I'm still on some steroids and other medications
40:25
that will phase out by month 6. So really the first six months
40:29
are probably the most risky by way of getting a cold, which is
40:33
why I'm out of work for that six months is to let my body get to
40:36
a point that's a little more long standing in terms of its
40:39
immunosuppression before we get reintroduced to society with
40:43
kids in school and, and me going back to work as a physical
40:46
therapist where I'm hands on with patients.
40:48
So there's, there's good reason and waiting at this point to, to
40:51
get back to those things. I would say one of the biggest
40:54
unintended gains from the surgery was just the fact that
40:57
we're shut in. My wife is off just because she
41:00
has to help with our baby at least because I wasn't yet
41:03
cleared to lift the 20 lbs that she weighs.
41:07
So because of that, we're around as husband and wife and then our
41:10
two kids are in the house. So it's really kind of been a
41:13
chance to kind of regain the the structure of our family here as
41:17
we're we're home every day. I'm Mr. Matt, I'm Hannah's
41:22
teacher right now. So I'm teaching her first grade,
41:23
which has already surpassed some of my intellect, which doesn't
41:26
bode well for the rest of my teaching career.
41:28
But so I'm teaching Hannah and then Leanna's taking care of
41:32
Elise because she can help with the day-to-day things that come
41:34
with a one year old baby. So it has definitely been an
41:37
upside of being home every day and just focusing on us.
41:40
We've all been through a lot, whether we've acknowledged that
41:43
or not. But this last year has been very
41:44
trying, and now we're able to just spend it with the four of
41:47
us. I would imagine the stress
41:49
levels just day-to-day, it's like anything, you don't realize
41:53
the weight of it until it's over.
41:55
I mean, I felt that way about the coronavirus.
41:58
And I don't think the coronavirus is over necessarily,
42:00
but I think the weight of that first year wasn't really known
42:03
to me until later. And I know that your family has
42:07
been a great source of joy and support, but I would imagine
42:11
there's a there's a new type of stress now, but it's a different
42:14
type of stress that's looking forward instead of fear.
42:18
You know, I think we've come with the realization after I've
42:21
been transplanted, but for so long we were fearful of the
42:24
transplant event. I don't want to call it end
42:26
game, but it was just the, the, the final stage of this disease
42:30
was going to result in a transplant.
42:31
But looking now that I've had eight weeks, 9 weeks to really
42:35
be feeling great, I shouldn't have feared the transplant.
42:38
I should have feared the last year leading up to it.
42:40
I was very sick. And again, whether through just
42:43
my my low level intellect or just being brave, I didn't
42:45
realize maybe how sick and dangerous living life was The
42:48
last year for me, you know, I've had a chance to review some of
42:51
my medical notes. And that's kind of what was
42:53
impressed upon me was how, how sick all the doctors alluded to
42:57
in my note, aside from the labs and things like that.
42:59
But just seeing words like tenuous and and obviously sick
43:02
and things like that really opened my eyes to maybe the
43:06
risky part wasn't the transplant, it was getting the
43:08
transplant. And that unfortunately for a lot
43:10
of people, they don't live long enough to get their heart.
43:13
So that's another certainly big check mark in the wind column
43:16
for me is I was able to stay healthy enough, long enough to
43:19
get this heart. When I called you on the phone
43:22
to tell you that I wanted to talk to you about this, possibly
43:25
for this show, which I didn't know for sure you'd want to do,
43:28
you told me at the time that you wanted to be an advocate for
43:31
transplanting and for donation. I'm wondering what does that
43:34
mean to you? How do you see that working?
43:39
You know, I think that there's a lot of misconceptions about
43:41
organ donation and I hope I can honestly be better versed at it
43:45
so I can have that conversation with people that have questions
43:47
for me about how it works. You know, certainly coming from
43:50
someone first hand that's been a benefactor of the donation
43:53
system, I think that can leave an imprint on someone if they're
43:56
ever on the fence to say, hey, I no matter he's my therapist and
44:00
why would I not make that decision if it could save
44:01
someone like his is his life. Ultimately, it's a very personal
44:05
decision to make a the organ donation your choice.
44:09
And I can certainly inform people on why I think it's
44:12
important, but I have to respect if someone chooses not to.
44:16
But I think the more I tell my story, that's just a chance that
44:18
it could resonate with someone that if they are offense sitter
44:22
on the decision, maybe it would tip them towards saying, all
44:24
right, I, I know this person and I'll move forward to choosing to
44:28
be an organ donor. Now that you, you've gone
44:33
through this process and you're already impacting, you know,
44:35
people like obviously I told you that I made sure that I was on
44:38
the donor list. How can people support the
44:41
transplant registry? How can, what are some concrete
44:45
ways that people can say, oh, you know what I was inspired by
44:48
Matt, I want to do this. I.
44:51
Mean, I think the biggest impact that I or anyone could make
44:54
would be to have more people sign up to be a donor.
44:57
I mean, there's, there was only 3000 hearts done last year in
45:01
the United States. That's in the grand scheme of
45:04
our population, that's a very, very small number of hearts and
45:06
there's clearly a shortage of available organs.
45:09
So if there'd be any, any win on this, it'd be more people sign
45:12
up for that. Certainly organ donation groups
45:15
can, can utilize funds to, to move forward with their mission
45:19
to, to get more hearts available, more organs
45:22
available, educate others about why becoming a donor is
45:25
important. And I, I purely, I'm scratching
45:28
the surface of my role at this point, but I think the more
45:31
people I can tell what my story, I think if you can place a
45:34
person's face to that decision that you could make, I think
45:37
that's going to be a good thing moving forward for, for others
45:40
that are waiting for an organ. You just mentioned, you know,
45:43
donations or funds. There's more that goes into the
45:46
impact of a transplant and the recipient of the transplant
45:49
beyond just your health. There's also the stress.
45:51
We talked about challenges for families to navigate the
45:54
logistics. Obviously, if you have two kids
45:56
and you just mentioned that you couldn't even pick up your baby
45:59
at first because of the the weight, the strain it would put
46:02
on your heart and but also the financial impact of it.
46:06
I think I read somewhere, maybe in something that your brother
46:10
posted about the cost of a transplant is like $1,000,000
46:15
roughly on average, which when I think about it makes a lot of
46:18
sense. But where does that come from?
46:20
I mean, is that just covered under your normal insurance?
46:23
You know, how does that impact you?
46:24
You're not working. There are all these other
46:26
challenges that go beyond it. And I could see where, depending
46:30
on your circumstance in life, you get this new heart and then
46:33
you're stuck in a kind of a rough, you know, financial area.
46:36
But also just like, what am I going to do now?
46:38
I'm wondering if you can speak to any of those other impacts
46:41
beyond? And I don't mean it to be
46:43
negative. But also just like to be upfront
46:45
with people like, hey, there are other challenges here.
46:47
Yeah. I mean, I think when I did the
46:49
initial research about heart transplantation and you do see
46:52
those numbers from 1.2 to $1.6 million for like the 30 days
46:57
surrounding A transplant or something like that.
46:59
I don't have the specifics, but it's well north of $1,000,000
47:01
for the for the course of care. I think I got a pre
47:04
authorization for the surgery and it was like $930,000.
47:08
So it's something like that. I mean, it's not hard to accrue
47:11
$1,000,000 bill for your hospitalization for a
47:14
transplant. So thankful, you know, to have
47:16
good employer sponsored insurance.
47:19
So in that sense, I'm able to at least have a ceiling effect with
47:22
an out of pocket Max where that's as far as this thing will
47:24
go for me financially. But like you said, on the flip
47:27
side, just being out of work for a prolonged period of time
47:30
changes the game in terms of your ability to make money and
47:33
ultimately support your family. So that's, that's the current
47:36
challenge we're working through, but it's something that we
47:38
thankfully had time to play on. You know, if someone we got very
47:41
sick very quickly and became a became a status 1 heart waiting
47:46
list person and you know, say at a weekend weekend event and
47:50
they're in the hospital the rest of the way, they're unable to
47:52
save up for this or to take those financial steps to try to
47:55
get ahead. So in our case, we kind of knew
47:58
this was coming down the road and just tried to change some of
48:01
the things that we did in terms of financial habits and just try
48:04
to save some money for the realization this day is coming
48:08
where our our jobs will be impacted and there'll be some
48:10
bills coming in. Yeah, that's intense.
48:13
What about positive impacts? I mean, you seem like a very
48:17
optimistic person in general and I know that to be, you know,
48:19
your personality as a as a friend.
48:23
But how are you feeling now? Any differently afterwards as
48:26
opposed to before? Any new changes in terms of
48:29
gratitude or or faith or support or anything like that?
48:33
Yeah, I certainly think that I was a person that tried to
48:37
express gratitude a lot before my transplant and even before I
48:40
was waiting for that. I just felt that, you know,
48:42
life's too short not to be thankful for things.
48:44
And like I said, even in spite of a pretty dangerous heart
48:48
condition, I was always almost thankful that I had it by way of
48:51
how it formed my life. People I met, that the career
48:54
choice I made, the experiences I had in life were often times due
48:58
to that condition. So I think I was trying to live
49:00
a very thankful life, and I don't think that has served me
49:04
wrong. Over my years, I've been lucky
49:06
to see some cool things and do some great experiences and meet
49:10
wonderful people. And I think that has just gotten
49:12
me to transplantation. And now I'm moving forward.
49:15
I think I'm profoundly thankful, you know, for the sacrifice the
49:20
donor's family had made by way of the decision to be to list as
49:25
an organ donor. I wouldn't be here.
49:27
Wouldn't be this good if it wasn't for that decision.
49:31
So I'm so thankful. I do feel a responsibility to
49:34
continue to live right and treat people well and just let my
49:38
values drive how I live. And that ultimately is a way for
49:41
me to carry on this gentleman's life moving forward.
49:45
Is there anything that I didn't ask or I forgot, something that
49:49
we didn't cover that you think people should know or about this
49:52
process or about you as we kind of come to the end of this chat?
49:57
I mean, I think ultimately, you know, the big red letter item on
50:02
the calendar is the transplant day, but there's so much on both
50:04
sides of it, both the waiting period coming up until you get
50:08
that phone call that is just a trial.
50:11
And I, you know, I've had a chance to meet some people that
50:13
are on the waiting list currently and they are going
50:16
through that. But it is such a relief to be on
50:18
the other side of waiting even in the acute phase of being in
50:21
the hospital and being pain painful from a surgery.
50:24
But you know that your wait is over and now new challenges
50:27
begin. And like you alluded to, it's
50:29
something that they'll be challenges every day the rest of
50:31
my life by way of medication management or the risk of
50:35
rejection that the fears have shifted in Leanne and I that
50:41
it's not going to be a tachycardia that that could take
50:45
me, that it could be something long term from a immunologic
50:48
standpoint or a rejection standpoint.
50:50
So the fears shift, but they're still fearful.
50:53
It's not like you'd cross the finish line and the race is
50:55
over. It's a different race.
50:57
That's really an interesting way of looking at it.
50:59
I feel like we have a lot of examples in pop culture and you
51:03
know, on television and movies about kind of the challenges of
51:07
other diseases. But I can't honestly think of 1
51:10
that talks about the lead up and the post of a transplant.
51:13
You know, maybe an episode of Grey's Anatomy where they show
51:16
that the dramatic part of it. But this fact that it
51:19
encompasses your entire life leading up and beyond.
51:23
I don't necessarily see as much as you do with some some other
51:26
terrible things that people are dealing with.
51:29
I wanted to just give you a chance if you, if there was
51:32
anything and I didn't prep you for this, so I apologize, but if
51:36
there's anyone you want to just say thank you to or anyone you
51:38
want to shout out, you know, that's been there for you in
51:41
this process. And any last thoughts?
51:45
I think I have to take a very broad approach and thank friends
51:47
and family. I don't want to specifically.
51:51
I was kind of hoping you would thank me personally, but I mean,
51:53
that's fine. Yeah, I mean.
51:57
As a, as a global theme, we've been so lucky with the support
52:00
of our friends and family, both local here in Idaho as well as
52:04
distant in the Midwest where we grew up.
52:06
But I mean, they, they got us there.
52:08
I mean, they were able to help us by way of support and just,
52:11
you know, friendly phone calls and chances to check in with
52:13
people while we were waiting because our life was such a low
52:16
level and just kind of in this holding pattern that we weren't
52:18
doing a lot. So we could chats catch up with
52:21
people were great and cards from people.
52:23
And then ultimately, since the transplant happened, we've just
52:26
been flooded with generosity and it's almost to an embarrassing
52:31
level of the wealth we have in terms of friends and family.
52:33
It's just something that they have supported us a hundredfold
52:37
greater than I thought we'd have even with our good group of
52:40
friends. It's just been one of those
52:41
things that I'm truly fortunate and our family's fortunate to
52:45
have the people in our lives that are that are helping us
52:50
move ahead. It it feels weird to say a
52:53
little bit, but I just congratulations on surviving.
52:57
You know, that's actually funny to use that term.
52:59
When I was in the Heart Heart Institute in the ICU and then
53:04
onto the heart floor after transplant, so many nurses and
53:07
lab techs and even, you know, docs that came in and say
53:10
congratulations. And I don't think you get a
53:12
congratulations if you had one too many sausages and you had a
53:14
blocked whistle and a heart attack.
53:16
Like it was just a really weird thought that dawned on me like
53:19
this is something to celebrate that way of being a recipient of
53:22
a heart that when people in a medical facility congratulate
53:25
you on your surgery, that just was such a spin on the classic
53:28
way of medical management by the healthcare model that you're
53:32
congratulated for something you had done.
53:33
That's really a cool way to look at it.
53:35
And I was that just, I think fast forwarded your, your
53:39
gratitude of the entire experience hearing people
53:42
congratulate you on having a heart transplant.
53:44
And I would imagine for them to see a successful transplant is a
53:49
celebration as well because? There is so much that doesn't go
53:53
right in the medical profession and, and we've seen how wearing
53:57
and taxing that can be on people who are nurses and doctors over
54:01
the last several years. And it's always been that way.
54:03
But I think it was just more apparent to people out in the
54:06
world recently. So I think it is a celebration.
54:10
I know that my wife and I are just, you know, we've got
54:13
emotional when we heard that the transplant was happening and.
54:17
And that it. Had gone well and it's continued
54:19
to go well. And you know, we're, we're,
54:22
we're just thrilled and I, and I'm, I'm glad that we have this
54:24
opportunity to now to chat about it and tell people about the
54:27
donor list and I'll share all that stuff on the website and
54:31
the newsletter, all that fun stuff afterwards.
54:33
But thanks for for being here and being willing to talk about
54:36
this, and I'm sure that it won't be the last time.
54:39
No, I appreciate your time and it's it's fun to tell my story
54:41
and I know it's unique compared to you and my brothers and
54:44
everybody else that's experienced receiving an organ,
54:47
but I think. That.
54:49
That in my case, it's just something that's started well
54:51
and I hope that it continues to be a daily improvement in terms
54:54
of my abilities. And just realization that this
54:57
is a long road with really no finish line.
54:59
And that's maybe the mentality that I have to have moving
55:01
forward is just every day this thing requires work and it will
55:05
get easier. But in the in the acute phase
55:07
here, it's going to be going to be a challenge and we're doing
55:10
well with it, but we'll keep battling for sure.
55:14
Well, Matt, thank you so much for being here.
55:16
I was so engrossed I didn't even finish my coffee.
55:18
But I'm going to do that now, and I'll talk to you again soon,
55:22
man. That sounds great.
55:23
Thanks for calling, Ryan. Appreciate talking to you.
55:35
So. Wow.
55:38
There's so much more than Matt and I could have gone into.
55:41
We could have chatted about him and his wife's decision
55:43
surrounding family planning, or we could have dived into the
55:46
genetic details of ARVC. Those could be episodes in and
55:51
of themselves, but I think for today, we've got enough to chew
55:54
on. Before I share some key
55:57
takeaways, I wanted to define a few terms.
56:00
The first definition is paraphrased from
56:02
hopkinsmedicine.org. ARVC, or arrhythmiogenic right
56:07
ventricular cardiomyopathy, is a rare familial disorder that may
56:12
cause ventricular tachycardia and sudden cardiac death in
56:16
young, apparently healthy individuals.
56:19
The hallmark of the disease is ventricular arrhythmias arising
56:22
predominantly from the right ventricle.
56:25
I had to look up a few of those words.
56:28
A tachycardia is when someone has a rapid heartbeat, upwards
56:31
of 100 beats per minute or more, and an arrhythmia is an
56:35
irregularity in the force or rhythm of the heartbeat.
56:39
So now for our key takeaways. If you take anything from
56:43
today's show, it is the importance and need for more
56:46
people to sign up for the transplant donors list.
56:50
I did recently on donatelife.net and it took all of 30 seconds.
56:55
You can make choices about your decision to transplant some or
56:58
all of your organs that will be recorded and accessible should
57:01
the unfortunate happen and your organs become available.
57:06
You could be the reason that someone else out there gets a
57:09
second chance. Again, I did that on
57:11
donatelife.net. Matt learned early on from his
57:16
experience with ARVC that we have a finite number of days.
57:20
It may not have sunk in right away, but the kernel of that
57:23
knowledge was planted during that high school football game
57:25
25 years ago. I find it quite inspiring how he
57:29
seems to instinctively look at the positives that came with his
57:32
condition, not the negatives. He even called it a net gain in
57:37
his life, pointing at how it led him to his partnership.
57:40
With his wife. The choices he made in his
57:42
career and now his young kids who, if they're listening to
57:46
this someday, should know that I think they're awesome.
57:50
Potential heart transplant recipients fall on a scale from
57:52
1:00 to 6:00. The patients in tiers 4 through
57:55
6 are able to wait at home with varying medical support.
58:00
A patient moved into the one to three range are most often
58:03
hospitalized in an ICU to support their heart while they
58:06
wait. Placement on the heart
58:08
transplant waiting list depends on where your medical needs are
58:12
AT and other factors like blood type, height and weight, and
58:16
your literal location in relation to the available donor
58:20
heart. the United Network for Organ Sharing, or UNOS, manages
58:24
the list and the logistics of placing A donor heart with a
58:27
recipient. They warn that heart
58:30
availability is unpredictable, and Matt mentioned earlier that
58:34
only 3000 heart transplants were performed last year.
58:38
I can't imagine the weight that comes with every decision UNOS
58:41
has chosen to make. You can learn more about them at
58:44
unos.org. That's unos.org.
58:48
Matt was on that list for 10 months.
58:51
At the time, he and his family had fears about the transplant.
58:55
It's a weird place to be, to be afraid of something that you're
58:59
also hoping against hope will happen.
59:01
In retrospect, Matt acknowledges that maybe the risky part wasn't
59:05
getting the transplant, it was getting to the transplant.
59:09
So many don't, even as they get sicker and sicker now on the
59:13
other side of his surgery. Rejection is a risk for the rest
59:16
of Matt's life, meaning the donor heart and Matt's body may
59:20
decide they don't like each other as much as they thought,
59:23
and his immune system will begin fighting against what they see
59:26
as an invader. Somehow, he still sees past the
59:29
challenges of his physical health, the emotional and mental
59:32
hurdles, and the more practical. Logistics like finances.
59:37
To focus on the Silver Linings, the time he's able to spend with
59:41
his family, and the opportunity to continue living a grateful
59:44
life from the outside. I'm overwhelmed that he's able
59:47
to do so without minimizing the scope of what he's been through
59:51
and how it's impacted those who love him.
59:54
Somehow he does, and he makes it look easy.
59:58
We held it together today on the show, but there have been
1:00:00
moments in Matt's life for him and his family.
1:00:03
Where there were tears and long hugs and moments where the words
1:00:06
wouldn't come. And earlier I mentioned the
1:00:09
weight of the moment. Sometimes you could and
1:00:11
sometimes you still can see it. I don't know that it does any
1:00:15
good to pretend it doesn't exist.
1:00:17
However, I want to also point out that human beings were able
1:00:22
to take Matt's heart out of his chest and replace it with
1:00:25
another, somehow remembering to connect all the corners without
1:00:29
the aid of color-coded directions.
1:00:32
It's pretty incredible. For the moments when I'm
1:00:35
struggling to understand why people do what they do.
1:00:38
Remembering that we can also make miracles like a heart
1:00:41
transplant happen is what brings me back around.
1:00:45
Finally, to the man who chose to donate his organ to the family
1:00:48
that lost someone, thank you. What a gift for Matt and for
1:00:52
everyone he touches. I said it before, but as a
1:00:55
reminder, if you'd like to sign up or just make sure you're on
1:00:58
the transplant donor list or learn more about what that
1:01:01
entails, go to donatelife.net. There is also a non profit
1:01:06
fundraiser set up to help Matt and his family pay medical bills
1:01:10
during this detente where he and his wife are unable to work,
1:01:13
which you can find at donate.transplants.org. back
1:01:17
slash story back slash. Matt Hankus.
1:01:20
I know it's a lot. So of course, you'll be able to
1:01:23
find that link and all the links from this episode in this show's
1:01:27
podcast notes and of course on roastwestcoast.com.
1:01:31
Thank you for taking a moment to check it out and learn more
1:01:34
about organ donation. And that's it.
1:01:36
That's all for this episode, the very first of the Coffee With
1:01:40
podcast. If you're listening on one of
1:01:42
Roast West Coast other podcast threads, please search for
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If you know someone else who I should have a cup of coffee
1:01:51
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or Facebook. This episode of the Coffee With
1:02:05
podcast presented by Roast West Coast is was has been written,
1:02:09
produced and recorded by me, Ryan Wolt.
1:02:13
A big thank you to Matt Hankus for spending an hour with us and
1:02:17
to his family, Leanne, Hannah and Elise for giving him up for
1:02:20
that same hour. I also want to thank Craft
1:02:23
Fourty 2 Roasters in Kelowna, BC for the great coffee that I
1:02:26
drank on today's episode. You can find them at
1:02:29
craftfourty2roasters.ca. Until next time, wherever you
1:02:34
are, thanks for taking a moment to have a coffee with me.