Episode 16

Thriving after heart and liver transplant with Jason Crutchley- 16

On March 4, 1976, Jason Crutchley was born with 4 congenital heart defects: Atrial Septal Defect, Transposition of the Great Vessels, Sub-Aortic Stenosis and Pulmonary Atresia. In layman terms, he was born with 1 chamber of my heart working, not 4! All four defects individually are very common in males, but to have all 4 in 1 is extremely rare. At six weeks old, he underwent his first surgery called a Pulmonary banding. At that time, the doctors gave him a life expectancy of 3 years. At 6 years old, he underwent (as the first child at UCLA) the classic Fontan procedure.

At the time he turned 21, he would need a revision (the lateral-tunnel conversion fontan). At age 23, his son was born perfectly healthy and then Jason promptly underwent 3 pacemaker surgeries.

Jason thrived for the next 17 years working in radio and as a wine tour specialist in Napa. In 2017, after loosing his mother, he was diagnosed with congestive heart failure and was in need of both a heart & liver transplant and began evaluation. By February 2018, he was fully listed on the transplant list and on 1/28/19, he was the only the 19th heart and liver transplant Stanford had performed.

Now, 4 years later, Jason is thriving as a maintenance tech working in Virginia. His transplant continues to be successful with no rejection.

Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

Transcript

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[:

Boots Knighton: welcome to the Heart Chamber. I am your host, boots Knighton. I interview Jason Crutchley. He is a heart and liver transplant survivor and thriver. His story is incredible. He was born with a congenital heart defect and underwent a surgery when he was younger, but by the time he was in his mid forties, it was time to change out the engine.

He and I go long in this episode, and every bit of it is important, so I hope you'll take a listen and I wanna hear from you. You can go to my website, the heart chamber podcast.com, and fill out the contact form or leave me a voicemail. If you have a story you wanna share on the heart chamber, I know that it will have an impact on so many.

ting donations on my website [:

I'm so, so, so happy to be connecting today and I I just am blown away and I'm so happy that we found each other through Anna

Jason Crutchley: Yeah.

Boots Knighton: who, the Heart, to

Heart podcast with Anna, and it's such a great podcast. And she connected us and I interviewed her in episode 14 and that was such an important interview where she shares the story about her, son being born with a congenital heart defect. So listeners, be sure to go back and listen to that. It's such an important story on how to advocate for

epic, epic event where Jason [:

into that. Where do you wanna start?

Jason Crutchley: Well, I mean, obviously it, it all starts the very beginning, right? So, I was born in 76 with four congenital heart defects. all four of 'em are very common to find in males. Uh, they are atrial septal, defect, transposition, transposition of the great vessels, subaortic stenosis, and pulmonary atresia.

So basically, in layman's terms, I was born with one chamber of my heart instead of four. at six weeks old, I had a pulmonary banding, and they said, uh, I mean, initially the doctors told my mom, look, he's not gonna live past a year. And of course I made it to, six slowly started suffocating to death.

happening. so at age six, I [:

LA over from South America, and, he's been there pretty much ever since. And so at age six, they utilize my case as a study case. So happy enough to say that at age six I trained surgeons. So that's kind of a, a cool thing. I mean, one for the record books, right? Yeah. So what'd you do at six years old?

beats a [:

none of that happened, they finally had to pull out the paddles and cardiovert me. so I had that done about, don't know, 15, 20 times in my life. and it's, uh, it's, it's a scary experience, especially as a child, you know, it's, it's definitely, you don't know what's going on and know, as it is, I mean, you're already scared because of you're in the hospital medicines, and this is, mind you, during a time where, Hospitals have changed so much, so much, like since I was a kid.

so much more compassion, uh, [:

And they, they try to allow these kids to really be a part of their, their medical process, which I think is, is extremely important, for a number of reasons. You know, first of all, it, I think if, if you're willing, and when I say you, meaning of course, children, if they're willing, it makes it easier to understand what's going on with yourself, right?

And, allowing yourself to have that knowledge and being able to for yourself is crucial. It's so crucial. and so there's that aspect of it. And then also of course, the fact that like, growing as you get older, able to go, oh yes, I was a key part in my care. it, you know, I never felt like I was outcasted because the doctors wanted to talk to only my parents and not to me.

ut this. Not let's listen to [:

You need to put me under, gave me 20 ccs of said, knock me out and pull out the card. You know, the paddles and cardio me. Oh, no, no, no, no, no. We, we don't want to do that. You know, we, we wanna do all these other, options. I'm like, you're, you're wasting your time. You're making me upset and I'm in a lot of pain, so let's end this right away.

So, um,

you know, we,

Jason Crutchley: we got through that

and, um, and I mean, I, I made it

Boots Knighton: Well, let's stop right there. I have

questions. I have

questions. I am like in a, I'm in an uproar for you because I, right here you are trying to be your own best advocate and thank goodness we have evolved as a species since then on

how to treat each other. But[:

Did you,

I. I mean, uh, were, were

you able to play sports, like

set

No, that's, I mean, that is

Jason Crutchley: a great, great question because, um, it's funny, so I was raised by a single mom, and my grandmother, and I say my grandmother in the sense that like, I would visit my grandmother every summer, right? And of course we lived about two hours away from my grandmother, so would go visit her.

It wasn't all the time, but I do recall in the summers I would go and visit, you know, a week, two weeks, three weeks, you know, on end with her. And my mom she raised me as a healthy child. She was completely like, go out, go run and play. I want you doing everything. A normal kid would go out and do you wanna go play football?

at, which, really I think is [:

Like, they'll, they'll know 'em, right? Whether you want them to or not. They know what their, their limits are and they won't go past that. I mean, they will to a point simply because of nature, right? Like, I was always pushing the envelope of probably doing a lot of things I really shouldn't have been doing.

But, that's where I had to learn my limits. Right? It's if you don't push head envelope, you don't know how far you can really go. My grandmother was just the opposite. She wanted me in a bubble. wouldn't let me do simple things like riding a bike. She wouldn't let me go out and ride a bike.

lay too. Oh, no, no, no, no. [:

Like, she would let us go swimming, but literally, and, and I don't even know, like what was told to my brother, I'm sure she probably told him, Hey, you know, you really gotta watch over him and you know, you've gotta be the big brother. And she would not allow me to leave his side. I, I constantly had to be with him.

Whereas my mom was like, yeah, you wanna go swim in the lake, go for it. Bye. . know, she was so supportive of anything that I wanted to go do. and, and it just, I don't know. I think it was just a better way to live. I think any child, whether you're healthy or not, the way to live. You know, go and be you be what you're supposed

to be a kid.

Right. Having fun.

So, um, yeah,

all was never like, that was [:

I mean, I like the idea of it and, and even now, and I, I think a lot of it is just because I was raised by a single mom. It's like we didn't, we didn't do sports, you know, none of us did. So,

even

now, I don't

Jason Crutchley: even watch sports. I'm not

a

sports person.

Boots Knighton: And, where, what town did you grow up in? You mentioned you had your surgery

at

So I grew

Jason Crutchley: up, um, in A.

very small town called Los Alamos. It's in California. It's about an hour, about an hour north of Santa Barbara for, for people that, that are aware of it. So, and then like nine

miles north

Jason Crutchley: of Los Alamo, Lamos is Santa Maria area. And so I kind of grew up in, in those two towns all the way up through, until my beginning of high school.

Tahoe until, ironically, the [:

aren't aware,

Jason Crutchley: when you generally have heart conditions, you can't be in, in high altitude places, it, it makes it very challenging to breathe and you're already.

Having issues trying to breathe anyways, so, yeah, and, and of course I was, you know, I was 18, 19 years old when I moved to South Lake Tahoe and at 19 years old, you know, everything. So, you know what, I'm gonna go there. And again, my mom very supportive. Go ahead. When you fall on your face, I'll be right back here.

I did six You, I think I was there for, yeah, like six months. I don't even think I was there for a full six months. I think it was like four months, kinda think of it. it just, I couldn't breathe and I'm like, I've gotta come home. And so that's, that's what I did, came back down to Sacramento. so yeah, it's, uh, it's really interesting how, I don't know if it's that my mom had that foresight or if maybe the doctors told her, Hey, let him just try and live the best life that he can cuz he's not gonna be around for very long.

I, I don't know. I mean, [:

old.

Boots Knighton: And how

old are you now?

Yeah, I am now?

Jason Crutchley: 46. 46, 47.

Yeah.

Jason Crutchley: Yeah.

so it's been, uh, you know, for my mom it was extremely challenging raising a hard child. specifically one that had so many issues were extremely rare. Um, all, all four of my conditions were very, very rare to find together. individually, each condition is very common to find amongst males, which I found was ironic.

there's been history of heart conditions in my family, so I'm literally a fluke. the gift special. I'm special.

Yeah.

I'm the gift

Jason Crutchley: that God gave

me.

Boots Knighton: it's hon it's an honor to know

you.

Like seriously, it is

an honor to know you and [:

Jason Crutchley: Oh, I like that.

Boots Knighton: And that

really hit me cuz I I'm, I'm making up that you, it seems like you have really worked through like some of the emotional pieces of this, and I definitely wanna touch on that more later. but I know, at least for me, when I learned about all the, the special parts of, of my heart, I really got stuck on I'm defective for a while. And I just really appreciate how you just framed all that. And it, it's not an easy emotional mental road like it's. Heart stuff. It's all three

physical, emotional, mental, right. And I think that's true for any, any

physical

Jason Crutchley: Right.

Boots Knighton: but with [:

you alive. It just is

like next level

So

Jason Crutchley: Um,

Boots Knighton: I just appreciate your, your lightheartedness

Jason Crutchley: yeah, no, I mean that's, I like, I got, I have chills and Jen Jen's probably laughing at, I have chills right now because I never even thought of it that way as congenital heart differences. certainly absolutely correct. and I, I love that analogy. I'm gonna, I'm gonna store that in my memory because that's, that's definitely what I was, I was a difference.

The doctors can't explain it. even to this day, the doctors still have no idea why I got the differences that I did in my heart. and I, and I should, let me go back just a moment to when I was six and I had that, that surgery, the classic Fontan, at that time, my mother was given two options. One option was the, the Fontan, which again, had never been done on a child at U C L.

as a heart transplant, which [:

Right. I'm sure I, I have no proof. Um, and we'll get into this in a bit, I, I don't know what exactly was told to my mom about that surgery, but I suspect there was some things that were told to her the possible side effects from that surgery my mom just kind of went, yeah, I don't care.

Just

keep 'em living. You know?

Boots Knighton: We gotta do something. We have

rightfully so. Right? Like, as a parent,

Jason Crutchley: I would be the same way. No,

I'll just,

Jason Crutchley: you know, heal my child. and so, Like I said, the, the procedure went great. I did very, very well. I, the doctors, the nurses, everybody were just really amazed at how well I did with it.

ch obviously I did get, and, [:

And so, I made it all the way to 21. And at age 21, decided, that it was time to do a, basically a recondition of that, that surgery. So it was called a lateral tunnel conversion, Fontan. and what it was, I was starting to develop symptoms of just exhaustion, feeling tired, worn out, you know, and, and there was really no explanation behind it.

arding, like anything on the [:

and so I've always been very fit in that. I've always had a very high metabolism. So constantly go, go, go, go, go. like I said, when, when you just start losing that, that steam and you know, I mean, you're the same way. You're a lot of hiking and biking and, and I, I know from hearing your story where you just started losing that, that energy and you're like, there's no explanation behind this.

I don't get it. And so, um, that's what happened to me. Same thing. And they, they just, they looked into it and they went, yeah, your fontan is starting to not function as well as it should. So we have this, this procedure that we can do lateral tunnel conversion, fontan, that will give you back, you know, your, your quality of life.

My mom has always been like [:

We've driven, in doing that. Driven from California to Maine, four different times. We've driven from California to Florida. so she's always been like my travel buddy. We've gone to Italy together, uh, Mexico together. So she's, yeah, she's just, she's always, and of course, because she's my mom and always, you know, looking out for me in my best interest, she's caring for me.

Like she was my rock. You know, she was a hardworking woman, single mom. she worked road construction for 12 years. She did, oil fields prior to that. And this was all during a time when women did not do those jobs. So she was a pioneer

in herself,

Jason Crutchley: right? Yeah. Doing, road

construction.

I mean, she

Jason Crutchley: was on these

Yeah, yeah.

Jason Crutchley: She was,

she was always on like heavy equipment and I mean, yeah.

So it's funny because my mom was

Boots Knighton: What a

badass

I work six days a week, and [:

So it's your job to, you know, keep the house clean and, you know, wash the dogs and mow the lawn and, you know, do all this stuff. So again, She didn't hold me back. Jason, you're still gonna get out there and mow the lawn. I don't care if it's hard for you. You know? so it was good. and so my mom has always really been my rock behind all this, and very much, you know, the relationship that you had with your mom, which I think was, was super awesome.

When I heard your story, it was like, wow, we have so many similarities. It's pretty wild. And so, naturally when I was 21, went through this surgery, of course, I kept her in the loop as to what was going on. She came down, you know, she always made sure to be right there by my side. so that surgery very, very well.

the time, did about anything [:

You know, I, I would hate to go swimming because the kids would laugh at me or I'd have purple lips and they would laugh at me and, you know, I would get teased a lot as a child. I never, like, I've heard of other people that, that really got, like, seriously teased and tormented. I didn't. And I, I don't know if it's because I grew up in a small town where everybody knew everybody, and because of that, everybody looked out for everybody.

You know, it's like, yeah, they teased me about it. But at the same time, you know, when I went into s v t as a kid, all the school kid, and this happened in cla in class, all the kids gathered around me and they were very, very supportive and, you know, wanted to do everything that they could. They'd stop by the house and, you know, what could we do for 'em yet?

were teasing me as a kid. So [:

It's my life. And that's how I took it all my life. It was just like, okay, this is who I am, whether you like me or not. You know, think maybe my personality made up for it, and maybe that's why I have the personality that I do, which is if you can't tell, very outgoing, very you know, here we go.

it, it, it definitely made a big difference, in, I think in everything. And, and I'll get into that more as we get further here. so 21, go through the, uh, lateral tunnel conversion. Fontan had no problems. excellent. Wasn't until I was driving limousines at the time. at that point I'd been driving limousines for about 25 years, specialized in wine tours in the Napa region.

and I was very, very [:

and I had clientele.

Boots Knighton: get to meet a lot of famous people?

Jason Crutchley: Yeah, I mean, I did. I I had my share of stars, frankly, and

I mean, if there's other chauffeurs out there, please

Boots Knighton: I.

me,

Jason Crutchley: but yeah, no, uh, there's, um, there's never, like, not a big star fan.

I'm not a starstruck person. I've actually only been starstruck twice in my life. one of 'em was when I got a chance to go and see air supply and concert then went backstage to meet, greet with them. and that was simply because my mom, when we drove those two hours ago, visit my grandmother as kids, my mom would always play air supply in the car and we would fall asleep and take naps in the car, two air supply.

t, so we put you to sleep. , [:

I wanna be a police officer because of chips that, you know, there it was. So here I am getting a chance to meet, you know, one of my, my childhood idols. but that was it. Uh, and, and I've met like some of my favorite artists in the world. I've chauffeured them around. had vice presidents, I've had secret service.

I've had, know, lots of big stars. big, big stars. And it's just, I don't know, I'm not, I was never, I would much prefer to have the blue collar worker as my clientele than a star, because to me, I feel that they appreciated it so much more. You know, the, especially the ones that like, okay, everyone scraped up your money, let's get a limo.

at really, really enjoyed it.[:

And so, yeah, I had to do a lot of homework, a lot of wine tasting. but, uh, it was, it was fantastic. I, I love the career. but in 2017, again, started to have problems. Not being able to breathe. But let me back up just a moment. During the year of 2016, my mom, uh, was in and out of hospice, home and for the, for the better part of 2016, actually, really more that the last half of 2016.

yeah, starting about June of:

so I did this for the better part of six months, and I was, I was just exhausted. I, I was really getting exhausted. So. In January 2017, my mom was back in the hospital and the doctors had come in. my grandmother was visiting. I don't remember. We were just having so many problems that, that I know. Um, I called my grandmother up. She actually drove up with her best friend and a family member. I mean, truly, Sally has been a very close, she's known me since I was, in fact, have a stuffed animal that Sally gave me for my surgery when I was six years old.

that, like, that's how close of a friend she is. so, so Sally, my grandmother

came up.

Jason Crutchley: [:

and we, we went to go visit my, my mom in the hospital and the doctor came in and said, so, you know, was asking her basic questions and then kind of turned to us and says, yeah, so, you know, she's an end stage cirrhosis.

And of us had heard that, none of us really knew what was going on with my mom. She never, my mother. Was the very, very quiet, in, in the respects that yeah, she would fight for her rights. She would fight for, for me, but she would never tell me or let on that she was sick or that she had problems, or, you know, she was like, I guess it's because she, she didn't wanna take any of that focus off of me.

I don't know. and maybe to her, my problems were greater than hers. I, who knows. So the doctors, uh, again us, yes, she has end-stage cirrhosis. She has C O P D. And I'm like, okay, well, like, what do you mean end-stage cirrhosis? Like, are, what are we talking here? And they, she goes, yeah, she doesn't have much longer.

I said, well, can [:

And I, I don't know that, that the doctor actually gave me an answer to that, which is fine. Like, I'm, I'm totally okay with that. So, left, grandmother, Sally, and myself, we went, we went downstairs. My mom was looking tired, so we went downstairs to the cafeteria and I had excused myself. I said, Hey, I, I'll be right back.

y. I said, you know, we know [:

Do you have any regrets in life? Right? And, and she goes, yeah. She goes, I wish I was a better mom. And it was, uh, it was, that was like shocking. was shocked that she said that, because I'm like, what do you mean? And, and I told her this. I said, mom, what do you mean you wish you were a better mom? I said, look, if, if you weren't an amazing mom, I wouldn't physically be alive right now.

I wouldn't be standing by your bedside. Even if I was healthy and you were a, a bad mom, I wouldn't be by your bedside watching you die. You know, like you were an amazing mom. You did everything that you could, you know, given your circumstance. You were a single mom, you were raising a healthy child and a child that was sick and, and we're not talking like, oh, little cold, sick.

you know, you were trying to [:

You know, first and foremost, you need to know this because like, you have been my rock. You've been, you've been my solid, you know, solid person all my life. Like, I, can't even begin to tell you how much I love you and care about you. And, and, you know, and so she was like, You know, she was kind of grateful that I, that I told her that.

and I had to work the next day and I almost called in sick and I should have, but I didn't. and my grandma, I was, uh, I was transporting some people. It was actually a, a business trip. I was transporting them basically from, from like one office to another office, to another office. And we were actually getting ready to go to lunch, and I had to drop them off.

now. And, um, it was, it was:

I need to go. I said, my mother's just passed away. I will have another chauffeur come out, uh, and get you. And, and they were, I mean, they were obviously very compassionate, right? It, it's, life. I mean, I, I don't mean to sound very casual, nonchalant about it, but maybe it's because, I had dealt with this for so long with my mom being in and outta hospitals knowing that she was sick, but not knowing exactly what the issue was that I just went, okay, you know what, this is, this is what needs to happen.

sad about that. So moved on,[:

And I knew that, I had, had to be the, the, leader of the pack at that point, right? I, I had to hold everything together. should back up just a moment real quick. I was 11 years old, my son was in my son, excuse me. My brother was in a cave and it caved in on him and crushed and killed him.

And so, I don't know how I forgot that, that little piece of information . So, that was very, very devastating for me. My brother and I were very, very close. He was, know, in school, he was my, uh, he was my protector. He was definitely the older brother, and were, uh, little over a year and a half apart.

e. He used to throw little , [:

died,

Jason Crutchley: my mother was actually in Santa Maria again, north, nine hours north of us.

she was, she was out playing golf and somehow, were able to get ahold of her and all they told her was, you need to come home right away. There's something wrong with your son. Well, naturally she immediately thought it was me, I'm the one with the birth condition. Right.

My, my

Jason Crutchley: brother was perfectly healthy.

He had no, no issues whatsoever. and so she, uh, she had raised home, the process was pulled over by the C H p, explained to the C C H P that there was an issue, and the officer would not let

her go. .And so long story short,

yeah,

long story short, there

Jason Crutchley: was a whole lawsuit there with the C H P, mean, it was just one problem after another

problem. so being, as

this happened in a

ly, it was a tragedy for the [:

And so after 11 years old, I was a single child, which was easy for me to, to adapt to that in, in that regards. Um, again, I think a lot of it is because of my optimism, right? And I'm still just a very happy person. so my mother passed away, sorry. So let me go back to where we were with my mother passing.

I went over, my mom had lived in HUD housing at the time, and HUD housing has rules that if, some, you know, if their, uh, tenant passes away, they have 14 days to get everything outta the house. I had no, I'm sorry, 10 days. I had 10 days to get everything out of her house. And, I did, I mean, again, I was working full-time.

nd of course everything that [:

I was like, I've, I've got pneumonia, which doesn't surprise me. I've been burning the candle at both ends for the better part of

six months, with my mom.

Boots Knighton: And let's just pause

for a second, Jason,

your mom died in January

of:

Yeah.

Boots Knighton: Okay. And so. As you're grieving, as you're dealing with all this, you're getting worse and worse. And so the pneumonia, your thinking that you had pneumonia was around what month of

Was February

Jason Crutchley: of

2017.

My mom died January 8th.

Yeah.

My mom died

Jason Crutchley: January 28th.

I'm

th,:

They ran a bunch of tests and they said, well, we really, we really can't explain. You know you're, you're dragging so much. He said, first of all, do have the flu. It's not pneumonia. I said, okay, that explains it. And they go, no. They go, you have pulmonary hypertension because of your heart condition.

So what we want to do is we're gonna release you and put you on home oxygen, and we want you to follow up with your cardiologist. And I let me get my cardiologist in here right now because this is, this is, no, it'll take me weeks to get follow up with my cardiologist. I called up my cardiologist.

ation started. So we were on [:

and so I called him and, and he came into the, the, uh, hospital right away. They actually admitted me. I was in there for a couple of days cuz while they were running all these tests and then they were like, yeah, we wanna release you on home oxygen. So I called a cardiologist and before they released me and he goes, how long, how long have you been experiencing this?

I said, well, I don't know. Better part of like three weeks or so. again, I had to kind of go back over the last six months with him as to what was going on in my life because I wanted him to get a full picture. and he said, Jason, I think, I think it may be time for transplant. What do you think? And I'm like, I'm not, I am not that sick.

Like, no way. You know, I, if you think so,

then okay. Like I'm willing to.

Boots Knighton: And had y'all been talking

about a transplant, I mean, the

way he just says that, it

mean, transplants

Jason Crutchley: always been on my back burner, right. Ever since again, ever since I was six years old. Right.

My

Jason Crutchley: mom and I knew, we always

knew that

y: at some point in my life, [:

We always were like, look, we've been so fortunate. Uh, medical technology's always been like one step ahead of where been just enough to where they can fix me, they can fix me, they can fix me. we were getting, you know, so again, yes, transplant was always in on the back burner, but it was never, ever like, brought to the front because we always thought there was gonna be another fix that could happen.

So when he said that I was, I was like, no, you know, I'm not that. I don't feel that sick. And, um, he says, okay, well let's, uh, you know, would you be open to being evaluated for it? And I said, sure. You know, I, that's fine. It's not gonna hurt me to get evaluated. he says, okay, well we have to send you to downtown Sacramento, cuz that's where they do the transplants.

I said, okay. So they, took me by ambulance downtown Sacramento. . was, I I actually wound up being admitted into the hospital for like a full week, for that. Yeah, it was like a full week, maybe even, was it two weeks? So it was pretty close to two weeks.

and so [:

And I went, what? They said, yeah. They go, not qualified to do your transplant because of your, congenital heart defects because of your, all your previous surgeries, because of, know, it's, it's so complex. It's far more complex than we would normally do and, and do. So we want you to go to Stanford.

And I said, okay. Yeah. I'm

like, okay.

aid, whoa, whoa, whoa, whoa. [:

I mean, the minute she got up, she was drinking her, her drink of choice was always wine, generally boxed wine. She could easily go through a box of wine in two days like she was a drinker. Right. And I knew that all grown up in my, my teenage years, it really affected us to the point that, um, my mom and I stopped talking for the better part of three years.

She wasn't around when my son was born. and, and like we, we literally did not talk, I didn't see her for, for three years. So it's ironic how close and tight we, we were prior to that then how close and tight we became once we got back to discussing and talking with each other. and so I'm like, so

the doctor

Jason Crutchley: said, no, no, no.

ave it because of your heart [:

heard of this.

and I, I asked 'em, I said,

can

you explain this? Because

Jason Crutchley: I'm, I don't I don't quite understand how this all plays out. what it is, is that when they do the Fontan procedure, it increases the blood pressures throughout the entire body.

Those increased pressures are what

created the

Jason Crutchley: cirrhosis in my liver. The one thing that they couldn't tell me is how it may have affected any other organs in my body, those increased pressures. So when, you know, like I've always known that, The whole body and, and this is how doctors are now looking at it.

re now starting to take into [:

That's it. Period. End of story. a whatever liver doctor, period. End of story, you know, and now they're really like, it. It's just, like I said earlier, it's just amazing where medical technology how they are training these doctors, how far it's come. Because if it was how it is now, back when I was a kid, I think, I think maybe things would be a lot different.

but I don't know. Right. It's, there's a reason why it's called

practicing medicine. They're always

Boots Knighton: Oh yeah.

Jason Crutchley: medicine,

so,

Boots Knighton: Mm-hmm.

Jason Crutchley: so

they were

Jason Crutchley: telling me, yeah, you know, it's, it's, uh, because your heart condition that you have cirrhosis. So I said, okay. So they said, because of that you may also need a liver transplant, a heart and a liver

I was ready for that. Okay, [:

I can deal with that just fine. But if I were to break a leg, oh, oh God, I'm a big baby , you know, it's, it's, and, and so it the same thing, like liver. I have a problem with my liver. I never felt anything. I never, like I, I, to this day, I have no idea. Like if I have liver problems, what that would feel like, or, you know, what that would be like.

d my first appointment, July [:

So, Sacramento guy sent me home, got me on home oxygen, and, and basically said, okay, just stay at home. Don't, you know, don't work, don't this, you know, we'll sign your disability papers. but yeah, you just, you just need to be a homebody and overdo it. Well, , that's hard to say. For me, I'm, I'm a go, go, go person.

, it's getting really, know, [:

It doesn't matter. July something. first appointment at Stanford was amazingly impressed. the last time I'd been into a major was when I was 21 years old, so it was, you know, 20 had been 20, almost, almost 20 years since I've been into, you know, major hospital for a major surgery. Right. I've obviously, I've been into my local hospitals for ER stuff, but.

, but I was a, like, I was a [:

Because I was such a unique case. I was the oldest Fontan that they had had as a patient there, be seen and to be worked up for transplant. with that, they were just completely amazed. And they wanted, you know, they wanted to study me like everybody else, . So, um, naturally I said, okay, you can study me.

Sure everyone else does. I mean, they just, they took really good care of me. I, I, I didn't see, PAs, you know, I saw the head of. Liver transplant. I saw the head of heart transplant. It wasn't like, you know, a couple doctors down the line. It was the head of the head. So, you know, they, they certainly treated me with white gloves and wanted to make sure to get me set up, to the point that they, they were even like, okay, we need for you to go and see the ear, nose, and throat doctor and figure out what's going on with your sinuses.

Uh, okay. Like, yeah, they [:

this forever,

Boots Knighton: to get you

the

best,

yeah.

Jason Crutchley: Well,

exactly.

Boots Knighton: survival, right. Like what's the point of doing a transplant if your sinuses are

gonna

take you out?

Right. But,

Jason Crutchley: but see, at, at that point, I mean, I'm, I was so new to transplant, I didn't know Right. Like, I knew nothing about transplant other than I needed one, or I, I was told I needed one. Again, I didn't really feel that I was at sick. and so by through all the workups, they actually did do a sinus surgery on me.

hat was September. Mm-hmm. of:

So it wasn't until, February I got listed for the heart. So by February of 2018, I was fully listed for the heart and liver. Well, night in November of 2017, I had insomnia, just couldn't sleep, want to keep Jen awake. So I went into the living room, pulled out the laptop, and just started reading through my medical charts.

just curious as to what they had in there. And I'm, you know, reading the stuff, I'm like, oh, okay. They, they kind of got that wrong, but okay, whatever. Like they diagnosed me with, with H L H S, um, uh, hypoplastic left heart syndrome. And I believe the reason why they did that is because all of my symptoms were very similar to what Hhl h s, patients go through.

nyways, I kept reading, kept [:

three o'clock in

Jason Crutchley: the morning, so I'm looking it up, liver

Boots Knighton: Oh my

Jason Crutchley: I said, wait a minute.

I

have liver cancer.

Boots Knighton: they never

Jason Crutchley: have cancer.

Like nobody,

Jason Crutchley: no, they, nobody's told me of this. So at three o'clock in the morning, calling my liver doctor, and of course I left a message. They call me back the next day. Oh, nobody told you? no. Said, can you explain this to me? Well, look, we'll have I, I wanna think it was like the, the PA or someone had called me.

I don't know it, no, it might

have been just a nurse. A nurse had called me.

Boots Knighton: I am

a.

Oh

I was like, I didn't want to [:

tell. people things until I know, like a whole lot of details because I, I don't wanna get bombarded with all these questions that I can't answer. So I kind of hold a lot of information until I have more details, and then I will tell 'em. and I'm also one that I don't, I've always, I always say, well, we'll cross that bridge when we get there.

Like, that's just my nature, right? I don't, um, I don't freak out about things it comes to that point. and, and I just, I deal with them, you know? so I told Jen the nurse had called me and she's like, oh yeah, I'll, I'll have the doctor call you. And of course, I don't know, I don't even remember the timeline, like how far along it was.

There is nothing that we can [:

So, because there's nothing we can do, we're just gonna monitor it. I'm like, okay. said there is it growing fast? Do we, like, can you tell me? They said, no. They go, we, we just discovered it. But it's, it's so small that. Again, there's, we can't do anything. We, we just gotta wait. And it's on an organ. Yeah.

And it's on an organ that's destined to be gotten rid of.

Removed. Right. Removed.

Boots Knighton: Okay. Yeah.

I'm like, okay.

Jason Crutchley: Now again, could the heightened blood pressure that I've gotten from my surgery when I was six years old, that caused my cirrhosis, could that have caused my cancer?

Absolutely.

So, you know, this is why I say you don't know.

We don't

Jason Crutchley: know what those,

how it affects

other organs. Right.

How it affects

Boots Knighton: Yeah. It's a downstream

thing,

right?

It really is.

le, you know, it's the whole [:

and so fully listed in March, in February of 2018, for both the heart and the liver, now it's a waiting game. So it, you know, I fill my days with, I would go out, I'd walk my dogs every day. Um, I was still bike riding. I was still, you know, I would walk on average about miles, four miles a day. You know, it wasn't like I was still very active.

but they didn't want me to work, so Okay, fine, whatever. So I just stayed at home and, you know, made friends with all the retired people at the dog park and , you know, just of lived as, as best as I could. kind of nice, but it sucks because all your friends are at work. So it's not like you can call up your friends, say, Hey, come on over, let's hang out.

th, at:

I was actually barbecuing at the time, and, they were, they were scheduled to be there at noon and so you get that call, um, it, there's a couple of of ways that that can go down. my case, I actually got a call from the surgeon, which sometimes is rare. . reason why I got the call from the surgeon is the surgeon told me your donor, or the donor, a known IV drug user.

you are ever offered a high [:

on the list. yeah. And so, uh, a high risk, like in my case, he was an IV drug.

He was a IV drug user. but his organs were still good. I mean, so I, I don't know a whole lot of details about, my donor and we'll get into that shortly. so they had to tell me that because it's, again, they, they are required to tell you when it's, uh, high risk because like I said, you, you had the opportunity to decline it.

reach into the, the washing [:

Um, I was so short of breath. I expected that if, if I, looking back now, like if I didn't get that call when I did, I think I would've had a about a month left live. knew at that time that I wasn't gonna make it through the summer. I, I absolutely knew that. and so three years, to the exact date and time I got that call, you know, my mom's death.

And, and I thought, wow, crazy is that? and so Doctor says, look, it's a high risk. Uh, I said, Nope. I said, let's, let's do this. I said, I'm, I'm ready. He says, okay. He says, um, you know, get down here to Stanford. I said, okay. said, look, it's, it's a Sunday, like everybody, so we lived just outside of Sacramento, Sacramento to Stanford.

o and a half hour drive. And [:

you know, do you need to call them to have me flown in there? He says, no, no, take your time. And I thought, take my time. when you go through this whole thing, they tell you you have to be within four hours of the hospital. there is no, take your time. And, uh, so I thought, okay, well that's, that's kind of weird, but okay, whatever.

off the phone with him and no sooner I get off the phone with him, my aunt and uncle come walking in and I tell 'em, I said, you guys, I, I'm, I'm so sorry. I have to postpone this. And like, they must have seen the look on my face. Mm-hmm. . And because they, they were like, goes, what's wrong? My uncle says, what's wrong?

have a heart and the liver. [:

my uncle, God bless him.

Boots Knighton: into action, right?

Oh, he

Jason Crutchley: he turned around and bolted out that door. He's like, we're outta here. We're gonna see you down there. And I'm like, uh, okay. Like, I think he was out that door before I could even finish telling him that I had a heart and ever waiting for me.

It was a, it was such, uh, I mean, and when you get that call, like every emotion that you have, every single one that you can think of, not just for me, but for Jen, , like for everybody that I told, that emotion goes through you and, and it all goes through so fast,

but it's like constant. It, it's a constant.

up into that night that, you [:

Boots Knighton: So,

you

got there in time.

yeah. So, yeah,

Jason Crutchley: so bizarrely, so of course I called Jen, Hey, you need to get home. I got the call. We gotta go. She's like, okay. we had already had bags packed. Uh, they, that's kind of one of the things that they train you when you do transplant. have a bag, go bag ready. I'm a, I'm a volunteer for the Red Cross, so I deployed major disasters in the country.

So I'm used to having a go bag always, you know, available, ready for me. So I kind of already had that prepped and ready. Um, and for us it was, it was actually very easy to have it ready. of course we didn't realize until now that we way overpacked, but whatever, you discovered those things later.

three kids between us. Kind [:

Yeah. But we never

knew.

Boots Knighton: cool.

Jason Crutchley: Yeah.

And,

Jason Crutchley: and in,

in fifth grade,

Jason Crutchley: they were

doing a,

Jason Crutchley: uh, a skate

night at, at the local roller rink. And, um, my son fell and hurt himself. He wasn't there. Yeah. I wasn't there. And I grew up on roller skates. I was a championship roller skater, so I recognized the fall and the injury. and my mom was a, a, a nurse, so, took all of that to care for my daughter.

ardboard and starts wrapping [:

I said, okay. He just got one point, but then I never carry coins in

my, in

Jason Crutchley: my pocket. So I said, he is not going anywhere. We're still having a good time. My daughter took him over to, the video game, got him some food so that at least they were kind of now winding down from fun. And an injury is not gonna, know, take precedence over being out with, with friends.

And so dad was winning at the video game, so I had to check in and go, these are my quarters. He needs to win . So, and that's how, that's how you met?

Yeah. That, that's how we met

Boots Knighton: That is adorable

Jason Crutchley: yeah. So I, I'd, uh, I, you know, thank her, Hey, you know, um, the Chipmunks movie had just come out. I said, let's, let's, you know, can I take you and the kids and we'll go see the Chipmunks movie?

ed numbers and we're driving [:

For the kids to go to Roseville schools. And uh, sure enough, I mean, she lived in the apartment complex right next door to mine. . And she was in the building, like she was second building from the, from the back. I was second building from the back. She was on the right side. I was on the left side. So we were literally separated by a fence.

Uh, yeah. It was just, it was just crazy. And

then

her son's name

Jason Crutchley: is Jason. I'm a Jason. My great-grandmother's last name is Carter. Her maiden name is Carter.

I mean, just as similarity as it's

Boots Knighton: The synchronicities.

Yeah.

Jason Crutchley: Yeah.

So,

you know,

Jason Crutchley: things happen for a reason, Right.

Boots Knighton: Oh yeah. And then fast forward, now you're on your way to a

transplant [:

yeah. And,

Jason Crutchley: and so yeah.

And so

Jason Crutchley: we're, um,

driving down. We call the support system. all of us were scheduled to go on a cruise the following week. So I'm like calling the cruise ships. I'm calling like everybody, or no, it was two weeks later. Two weeks later, we were going on a cruise. So, you know, I'm calling our, everybody that we got a call to cancel this and do this.

Uh, it was, it was wild trying to like, fortunately we had that drive, right? We had time to like do all this stuff. So, uh, we did all that. We get there to Stanford, and by this time it's five o'clock in the evening on a Sunday. It's a ghost town. we're walking the halls going, this is really eerie. Yeah, right.

Like, where do we go? No, they didn't tell us where to go. They just said, get down here.

So nobody is around to

answer

Jason Crutchley: questions. I mean, I don't even see a doctor or a nurse walking the hall or a patient like nobody. we knew that the ER was closed, functioning closed, er I'm like, Hey, the ER's open 24 hours a day.

Let's [:

And then the doctor comes in to talk to us and he says, Hey, uh, welcome to Transplant Life. Hurry up and wait, come again. He says, yeah, so we scheduled your transplant for two o'clock tomorrow afternoon.

And I'm thinking to myself,

Boots Knighton: Oh

why?

Jason Crutchley: I thought we had a

four hour window. Yeah. Where, yeah, where, where's

our window

Jason Crutchley: at?

Like,

Jason Crutchley: I'm

so confused. Why am I here

right now?

You know, like

Jason Crutchley: I could have a little bit more

time to, I

es, you're, you know, he had [:

They gotta put eyes on the prize, then, they'll bring it over, blah, blah, blah. So they, they, he kind of went through the whole process with me. And then after like, I don't know, after a couple hours of chaos it's, you know, we gotta get all these labs done and these x-rays and cts and this and that, then all of a sudden I think by that time it was like nine o'clock at night.

And it's just Jen and I I mean, again, the, the thrill, the, the, emotions still have not died down. You know, we're still, but I think more so at that point, the fear started to set in, what ifs started to set in more. I still was very, very arrogant, you know, confident, oh, I got this, this is nothing.

nd, so it, it, it was really [:

So, next day, get up. Kids, you know, kids, kids start showing up. like lots of stuff was going on, but not going on. It's again, just really a weird vibe cuz you don't, I don't know what to expect. I didn't know what exactly was happening and I'm like, okay, now I'm, I'm kind of getting antsy at this point.

So I'm like, you know what? gonna put some more miles on my heart. So I go out and I started walking the halls and I wound up walking another mile and a half

before my transplant. And, and again,

still

Jason Crutchley: just was like,

I can't believe that I'm, I'm going in for a transplant. Like, I'm not, I'm not that sick.

was so sick that I needed to [:

that's exactly what your dad is doing right now. Literally signing my life away. had to have it notarized, like everything, right? It was, it was pretty bizarre. And, and then

they're like, okay,

Jason Crutchley: we need for you to shave. And I'm like, oh yeah, I already took care of that. They go, oh no. Everywhere. Yeah, I, I got that.

They go, no, no, no. Give me your arms. Like we're shaving your arms, we're shaving your legs. I'm like, what? Blew me away? They shaved every, except for my head. They shaved every part of them. I'm like, okay, that I didn't expect. That was bizarre. and then, um, you know, I'm getting wheeled into the, OR said I don't say goodbyes.

It's, I'll see you later. I'll see you on the other side.

Yep.

see you later. Because again, I just, I

went into

Jason Crutchley: it

very

Jason Crutchley: confidently.

I got this very, [:

arrogant.

Jason Crutchley: I say arrogant cuz I, it's like, yeah, I was just, I was so confident that things are gonna be fine. This is walk in the park, I got this.

No big deal. And, um, when they finally got me into the or, which the way, if, if, if you've never been wheeled into an or, and you're still awake, it's very unnerving because you know what you're going

in there

Jason Crutchley: to do. And, you know, and then, I mean, it's, it's such a, and I'm trying to remain calm. I'm breathing, I'm, you know, doing all the exercises that I can to try and be cool and calm and collective and myself funny and, you know, witty as, as as always, always.

h. I'm like, there's no way. [:

Cause I was laying down, I don't know. But I was like, there's no way you're gonna fit this many people, because again, they wanted, they had to have the heart transplant team, they had to have the liver transplant team, they had to have the pediatric transplant team. They had to have, um, all the other doctors that were training

that were there

Jason Crutchley: to learn, because again, I'm, so, I was the 19th and liver combo that Stanford had

ever done. because of that, I'm part of that,

that group of people

Jason Crutchley: that they will use my case along with the 18 before me as a, as a training right. Tool for, for future transplants. And so, um, it, it's, it's like, wow, you, you have this many people in there. And I was, you know, and then Okay. Need you to slide over to the bed.

first time I laid down on a, [:

And you know, your spasms

Boots Knighton: the size of a

postage stamp, .It's like, it's

like .

It's

so small.

Jason Crutchley: And, um, and I, you know, and then I recall that they had had brought my arms straight out, like, know, like I was being nailed to the cross and strapping me down and I'm like, oh, this is, like, this is really getting, and yeah, at that point I was really starting to kind of freak out about it.

woke up and went, holy moly, [:

on him. never seen fear before on his

face. It was bizarre. so went through a lot of ICU U delirium, and if you, if you don't know what that is, first of all, you can always check out ICU It's, it's literally what it implies. It is delirium that happens generally when you're in the icu.

a lot of it is because of. The fact that you're in a foreign place, the medications that they have you on, whether it's the pain meds, in my case, because I was doped up with all kinds of pain meds, steroids, you know, all the anti-rejection medications, like there was so much going on with my body, the trauma that your body goes through.

t before. I didn't even know [:

No one ever mentioned, Hey, there's a chance that you could have ICU delirium. I wish that they would've told me that. I wish they would've given me that website so I could have looked it up before my transplant. so would ha I, I had crazy, crazy, crazy delirious dreams, that were very vividly real to me.

And I, know like a lot of 'em, I've, I, I can't say I've blocked them out per se, but a, a lot of 'em I don't remember, but there are some that I remember. Um, one of 'em was at, was in again, went through my transplant and I was trying to get my, me my medications and I'm in a drug house. And in this drug house a heavyset Hispanic male, a half naked woman.

very hard for me to see. And [:

Once that body was put out, he cut into the body and pulled out my medication and said, here you go.

Here's your meds. And, and again, it,

and it was vividly

Jason Crutchley: real, like it was a nightmare, but it

was reality.

Jason Crutchley: another one was that my son, who my son does it work. And so he works from home a lot. So he came to my hospital, obviously, you know, check on dad, and he would stay with me and he would do his work on his laptop.

them more, more information [:

And so in reality, what was happening is my son was sitting there typing away on his computer, right? Just doing his work. nurses would come in and you know how like the nurses would scan their badge to log onto their computer, and

sometimes those

Jason Crutchley: scans wouldn't,

they wouldn't

Jason Crutchley: go through, they'd have to scan it twice, three times, whatever.

that's what these nurses were doing, in my delirium, they weren't getting access because the black market guys were like, Hey, your son needs to give us more of this information. And, and I'm like sitting there looking at my son going, what are you doing? Like, you are literally killing me right now because I can't get my meds.

So it's delirium just weird things. Yes, I did see bugs. Yes.

I, you know, clock on the

Boots Knighton: And so you're communicating all this

right to them and they're, are they saying back to you

Oh,

you couldn't,

Jason Crutchley: no, no.

no. See,

Jason Crutchley: I couldn't

communicate.

I was

Jason Crutchley: trached.

I had no movement

of

my hands.

Boots Knighton: Oh

Jason Crutchley: I mean, I, I

couldn't, I couldn't move

Jason Crutchley: my body. I was strapped to the bed. were wollen. I couldn't talk.

I was [:

What's your name? Where are you? What is today's date? Why are you here? I would tell these doctors everything that they wanted to hear. wasn't what was going on in my brain, but it's everything that they wanted to hear.

So

Jason Crutchley: in my delirium, was in Japan I was in a dentist's office, or I was in a crack house, or you know what I mean?

But I wouldn't tell them that. I would tell them,

I'm

you are in delirium or not. [:

Like all this stuff was explained to me after I was released from the hospital about I C U delirium and such. my delirium kept going on and on. It actually lasted for about three and a half weeks. And it wasn't until something inside of me this isn't right. It's not reality and it's gotta be because of the medications you're on, the pain meds.

Tell 'em to stop giving you pain meds, with the pain, the pain meds. And I don't know how I was able to communicate that, but I, I was, and. Of course the doctors were like, no, no, no, no, no. We, you know, we want to, we want to give you sleeping meds and we want to, you're not sleeping at night. I'm like, yeah, I'm not sleeping at night because I'm scared.

Death, like, a very

common

l me. the way that they were [:

So I actually went and ripped out my IV in, in my delirium. My, and this is why they, they had to tie me to the bed. Cause I ripped out my iv except that it wasn't my iv, it was my art line. And so the nurse came in, she's like, oh my God, there's freaking blood everywhere. And I'm like, oh, relax. It's just my iv.

I didn't know it was my art line that I pulled out. So they had to redo that. yeah, it was, it was very tragic. It, it, um, I, I actually developed,

uh, P

Jason Crutchley: T S D,

uh, because of my ICU

delirium.

Boots Knighton: And I'm so glad, Jason, that you're sharing this because this is such an important

piece

of

Jason Crutchley: oh, it really

is.

Boots Knighton: or,

I mean this is, I mean, I'm, my heart is

breaking

for

you.

Yeah.

Boots Knighton: Thank you.

for sharing it. Cause it's like, this is

so

like you just alluded to it, [:

in a short bit, but Jesus, how long were you in the

I

C U for?

I was in ICU

Jason Crutchley: for

three and a half weeks, and then I was in a step down unit

for another

Jason Crutchley: two and a half weeks,

so total of five and a half weeks that I was in the hospital, mind you, in the bed the entire time. because of that,

once

Jason Crutchley: they finally started to get me up and move me around, I had to learn how to walk again.

I had to learn how to talk again because the trach, had damaged my vocal cords. And so I literally had to learn how to talk again. I had to learn how to write all over again because my hands were so swollen I couldn't figure out how to hold, you know, a pen or write or anything like that. Um, in fact, I still have, uh, the notes that I would write to Jen attempt to write to Jen that were clear to him, that were cl yeah.

, what the heck was I trying [:

So he was declining. And then they had a conversation with me in order to save him, we're gonna need to trach him. And I said, we didn't talk about that. Yeah, we, we never had that conversation. So they said, that is the decision that you need to make. And I said, then bring in the surgeon. I need to hear it from the surgeon that's what Jason would do.

a decision in order to save [:

So I had taken that away from him and now became first position and now advocating. trying to understand maybe what I could extract, from his, I got a lot of eye rolling. He, he got a lot of eye muscle in , at first .

So,

but

Jason Crutchley: it

was,

Jason Crutchley: you know,

it was one of those things where I had to be strong enough because he was angry that now he could not communicate.

years we were [:

Mm-hmm. , he found peace in the jazz music that I found, uh, in order to help him relax, communicating to the nurses around him that he was not a patient. This is Jason. Did you know Jason would relax when I'd start telling hi, uh, the nurse about, how he was, uh, a wine tour specialist and have you been to Napa?

And, and Jason would perk and pay attention, . And it was then they started having conversations with him where, uh, did you know that Jason is a day person? He's, you have him in the morning in a dark area of the hospital, and they did, they did this whole promenade of his bed and all the machinery to the other side of the hospital.

And Jason, you [:

Boots Knighton: Yeah,

So,

Jason Crutchley: Yeah,

Um, she has

Boots Knighton: advocating.

Jason Crutchley: yeah. she brought up a really good point too, like my transplant. of all, I understand that everything I'm, I'm saying it's my story.

It, it doesn't mean that it's gonna happen to transplant recipients. that's the biggest thing that I communicate with any, that we mentor. This is my story. many friends that have had a much more difficult time with transplant. have other friends that, uh, did even better than I did.

as awake, I was alert. were, [:

And they, they couldn't figure out what was going on. What did they figure out? It actually was, there's a combination. Uh, your body was going through shock. Uh, the medic, they had to balance out the medication. weren't sure if it was rejection. the, there was, they backed into, um, eventually understanding that the liver was sewn in too tight.

that's right. That's what it was. And it caused an infection. And so,

it, it, they were,

Boots Knighton: Sewn in too tight.

Jason Crutchley: yes.

Boots Knighton: I'm just trying to picture that

like,

so

Jason Crutchley: they, yes. We had several

Boots Knighton: too many stitches, like

Jason Crutchley: they had to put in stints to

widen the area.

Boots Knighton: Oh, okay. Oh, maybe the arteries

were

Jason Crutchley: Connection.

They just, it was

explained as the connection.

Yeah. I don't

o I'm thinking arteries were [:

something, then that's

what I'm

making up. Like

Jason Crutchley: maybe. Yeah. I,

Boots Knighton: and especially since you mentioned

stents.

Jason Crutchley: Yeah. So they had to do, um, they had to do these stents that every, how often was that? Every

three weeks they had to go in and add another stent. Mm-hmm. . I think it was like every three weeks they had to go in slip and do another stint, and then three weeks later, another stint, and they did a total of five

stints.

Boots Knighton: dude.

Jason Crutchley: yeah.

So

Jason Crutchley: it, it was, you know, I had complications, right. And fortunately, uh, they were resolved. They figured him out. And here I am now, you know? So, but with, even with all those complications, I've never had any rejection, none. every time they've gone in and have done the biopsies, I've been grade zero rejection.

the case. All the rejection [:

Uh, so rejection, there's, like four different stages of rejection. Um, there's actually more than four, but it's broken down into four. Um, so obviously one through four. most people will, will experience like type one or type two rejection, and basically all that means is that the plan that they have you on, the medication plan that they have you on, is not working, so they just have to alter it.

gonna attack your new organs.[:

So it's, it's a very, very balancing act that they have to face. And that's where rejection comes into play is that that balancing act is, off kilter, it's off balance. and in my case, it's been spot on. They've had no issues. Once, you know, once they've, the initial, probably like the first, the first three months of transplant is the most challenging because that's when they're first figuring out all of your medications, what works, what doesn't work.

After that, it gradually gets better. But all being said, the first year of transplant is, that's like your, your, your golden hour, if you will, of, of transplantation, of, of care. So after your first year, you're pretty much set with where you're at, generally speaking. but the first year is the hardest because.

though it takes six weeks to [:

you have someone else's

Boots Knighton: two in your

Jason Crutchley: in my

case.

too.

And in,

Jason Crutchley: in some

other people's cases it's three

and four.

Jason Crutchley: and, and

it's, it's

Jason Crutchley: an infantile stage because yeah, any bacteria, you, you become very sensitive to.

So,

Boots Knighton: Okay.

Jason Crutchley: um, yep. So that the first year of transplant, you're wearing a mask. Yep. And it's not, it's not like the little paper mask that, you know, we all have to wear right now with covid.

These are respirator, like the kind that you would use to go and

paint your garage with, you know, they're heavy duty respirator mask and

again. had my feet felt like [:

And then I have this giant mask on that I can barely see, you know, I can't bend over because of, of all the chest, know, being cut open, ripped open.

So

Jason Crutchley: there are a lot of challenges, right? A lot of challenges. Transplant is a lifestyle change. It is a complete lifestyle change. Anything that you went into transplant with, you do not come outta transplant with.

And what I mean by that is that, you may be used to, so I was a meat and potatoes guy prior to transplant after transplant. Uh, first of all, I had no appetite whatsoever for like the first

six months. well, no, it was less than

that

was what, like

Jason Crutchley: the first three months I had no, no appetite. So it was actually an ideal time for me to switch over to a plant slant diet, and that's what I did.

to get back onto my, my, uh,[:

Yeah. And that's it too. you can't

you can't eat out for the first year after

transplant

because

Boots Knighton: Yeah. You just have

to be

so careful.

Right. Well, you're

Jason Crutchley: under, I was under, uh, an

extreme amount

Jason Crutchley: of dietary restrictions. So I, I was on a low sugar because transplant gave me diabetes. So now I'm on a low sugar, low sodium, low fat

diet so I can have water.

Boots Knighton: Wow.

Jason Crutchley: Like that's, and that's frustrating. It's very frustrating because, and then on top of that, everything needed wash, everything has to be washed with soap and water. Anything that goes in your mouth has to be washed with soap and water, including things like, oh, I don't know, avocados. you go, well wait a minute, I don't eat the outside the avocados.

No, but you cut through 'em and the minute that you slice right through

it, [:

Jason Crutchley: bacteria will go right through that avocado. So you have to wash everything lettuce. How do you wash cilantro? You ever thought about that one?

tell you how

Boots Knighton: you put it, submerged it in water with, uh, hydro hydrogen peroxide.

Jason Crutchley: uh, we, we just emerged it in Don dish

soap, soapy water,

Boots Knighton: Oh,

Jason Crutchley: and you know,

Boots Knighton: Okay.

it down

Jason Crutchley: in the water, run it around, kind of, you know, and then pull it up, rinse it. Really good. So yet we had to do that with everything and for the first year. So again, know, it takes two weeks to establish a habit. Well, gotta imagine you gotta do this for a full year.

So you have a whole new habit, a whole new lifestyle. I used to never wash my vegetables before transplant, you know, wash a watermelon before you, yeah, wash a watermelon before you cut it up. Like who thinks to do that?

Nobody

now, and even now, uh, four, [:

if it's windy, if the wind is above, six miles an hour, I have to wear a mask. I have to wear that same respirator that I wore the minute I got released in my hospital. Anytime it's windy like that, anytime I'm doing yard work around road construction, any kind of construction, especially where dirt is being stirred up because in dirt is Aspergillus is a mold fungus and it's traditionally found in soils, it's also found in air. irony of that is to transplant, I discovered I was allergic to aspergillus, so I'm allergic to air. How cool is that?

Not cool. Um,

Boots Knighton: cool. That is not

cool.

but not cool.

Jason Crutchley: Yeah, you gotta breathe right. transplant recipients, aspergillus is like, that's, that's deadly.

pic so you can't see it. But [:

So, it's, it's just, it's a huge life. So, yeah, I gotta wear my mask now, if it's really windy, well, anything above six miles an hour, which for, you know, if you know it's six miles an hour is not a big wind. That's an, that's a nice breeze. Like I normally, I'd be like, oh, this feels so great.

Nope, not anymore.

Jason Crutchley: Now actually what it does, it causes anxiety in me. and we just discovered, so we're new to Virginia. We moved out here about seven months ago with Work Virginia. This place gets windy a lot, , so my anxiety's always through the roof around here. and so there's the wind. You gotta worry about, construction.

circulation in your vehicle [:

again, it's, it's this whole lifestyle change that you go through just to survive and bringing friends on board to educate them. that when they prep any food for Jason, we almost bring our own food. Yep. they don't have the same habits that we have in order to Yeah. And well, and they maintain our lifestyle and they don't understand it cuz they're not going through it.

Right. And even, like, even now, we

still

Jason Crutchley: will have friends will come over and maybe he's, you know, coughing or, or is sick and it's like, dude, I've told everybody this time and time again, if you are sick, come over. Just tell me I'm not offended, but I have to

w, you can't, you can't just [:

oh,

Jason Crutchley: I

I just

Jason Crutchley: had

this minor cough.

It's nothing fine. It's nothing for you, but it can kill me. You know? And, and we've had a,

we've

Jason Crutchley: had friends just show up. Oh yeah. You know, our daughter is at home because she's sick. What? Okay if she's sick and she's at home, you need to be at home. I can't be around you. I understand that you feel fine, that you're

healthy, but

Jason Crutchley: I can't be around

you. you know, it, it's, it's a paranoia that, that I go through. And I think really kind of goes through it too sometimes, because I know like immediately after transplant she was like, oh, don't do that. Oh, don't, you know, really just jumping on things and I get it. I mean, it's. because it's my life.

ure that that responsibility [:

wearing a mask, uh, washing

food.

Jason Crutchley: and yeah, I had to, I had to be able to be that support system where everybody wanted to come see him after transplant. And I said, Nope. Yeah. I waited till he was stronger and literally only the day before and the day of, him getting out of the hospital to give him time for, uh, friends and family to, to be there for him.

I wanted the, the best type of transition from the hospital setting to a home setting, which was the, uh, hotel for the next two months.

Boots Knighton: Wow,

that

It's a

Jason Crutchley: lot to take in. It's, it really is. And, uh, and, you know, the education

part is

d maybe he wouldn't wash his [:

you know, even in my job now, friends that smoke, yeah. People that smoke, they had to, they had to change clothes before they entered our house. Mm-hmm.

Boots Knighton: Mm-hmm. ,

Jason Crutchley: like,

there's so

Jason Crutchley: many

things to

Jason Crutchley: it that it's, it's very in depth. It's not. that's why, when it comes to transplant, the doctors are very cautious about, you know, they're not just gonna say, Hey, you know, you need a transplant.

It's not, it's not that easy. You've gotta go through a lot of obstacles to get that transplant, know, to be accepted on the transplant list. and, and the doctor, everything. I mean, like, ha I had to see psychologists mm-hmm. before they even put me on the transplant list because the psychologist had to clear me and say, yeah, he's, he's a, a stable guy, you know, or not only is he stable, but

he

Jason Crutchley: is mentally prepared the transplant.

if [:

And, and when you think it's super strong, rethink it. Revisit it. Mm-hmm. , because there are people that, uh, was part of our circle, of, of friends and, and even family that, you know, we, we were like, oh, these are the best people ever. We are surrounded with the best people. And when it came down to it, these people are like, we're out and, and you're what?

hat they can continue living [:

you have to understand. The way that Stanford worked at that time. I believe that they've changed some stuff. Not, not everything, but they've changed some things. that, they told us that we were gonna have to live in a hotel within 20 minutes of the hospital after I got released from the hospital for three months.

Boots Knighton: Mm-hmm.

doesn't pay

Jason Crutchley: That

comes out of our pocket. So not only are we paying for a hotel, we're paying, we're paying for food. Right. Whether it's, which, at the time we didn't know that we couldn't eat out, but we had to plan for it. Right. food, hotel, gas, what else? Uh, parking, like all that stuff, insurance doesn't pay for.

ere still living at, at home.[:

See, your eyes

are nice and wide. Yeah. They, they literally fired me. Cause she would not report to work when the doctor said, here you go, he's all yours.

And, and the job

Boots Knighton: there was just no

compassion. No, compassion, Jen, that

Oh,

wow.

Yeah.

Jason Crutchley: So,

So, yeah, we, we fundraised, uh, I fundraised the entire year that I waited for my transplant. I was doing, that was basically my full-time job was trying to fundraise for, for

my transplant, and even

now, right?

, um, tax write off thing, [:

So it was great. And, and, and yet we have, you know, what we thought were super close friends that were saying, well, they're only so that they can continue living their lavish lifestyle. I'm like, what? Lavish li First of all, we couldn't bec we couldn't touch that money unless it was related to the transplant.

So do you mean our lavish lifestyle? Fundraising for our lavish What? Yeah, we're fundraising so that I can continue to eat healthy the way that I'm supposed to eat after transplant. I don't know, , it's really weird. Like there's, there's so many changes, um, that happen in your life. You, you truly discover.

Who your, close, close friends are.

we had a,

Boots Knighton: .I'm nodding cuz I'm like,

yep.

Yeah.

ts Knighton: It. It's really [:

Jason Crutchley: It's, yeah, because like

Boots Knighton: what falls

Jason Crutchley: you,

yeah. And you,

Jason Crutchley: you think that you can rely on people you're you're just, you're like, really? can't, you're amazed these people let you down and, and they're the last people in the world that you would think would let you down, you know? But it happens. And so that's why I say, when you think you've got a good, solid support team, and you may, you may have this, the best solid support team ever, and they may stick with you the entire time.

Again, this was my story, you know, this is what happened to me, but I'm, I'm pretty sure, and this is going off of my experience and hearing other transplant recipients, um, experience too. I'm pretty sure that that solid support team, there's gonna be someone in there that you think is gonna be solid and they're not gonna be, and it may really surprise you who that person winds up being.

So just, just [:

so a year passes, we go to my one year anniversary, uh, one year birthday. Uh, when you have a heart transplant, you have a, a new birthday. So I actually have two birthdays now, 28th and March 4th. it's kind of fun. I really mess with people with that one, especially like when they're like, oh, okay, when's your birthday?

3/4/76 or 1 28 19? And they're just like, what? ? Yeah. I have two birthdays. we get to the one year, Hey Jason, you're doing so great. We're so excited for you. You no longer have to wear the mask as much, right? Again, still the windy conditions, uh, the construction. those are the examples. also like if I'm, if I'm on a plane, you know, tight confined spaces.

o drive our bigger bus limos [:

Now what I was doing for life to, to, you know, keep myself healthy and alive by wearing the mask. , now everybody's doing it. So now I don't look like such a freak anymore, which is great. Right? I'm not walking into a bank wearing a mask anymore, feeling weird, you know, Hey, gimme all your money. So, yeah.

Uh, . So everyone's like, oh, yeah, you're a trend setter. Yeah, great. Like, that's the trend I wanted to set, right? It's wearing a mask for, so yeah, that was, uh, that was surprising. Um, COVID affected my job very badly. Obviously. The, the whole entertainment industry pretty much went away. Wine tasting went away.

my boss, I said, look, still [:

So, while we were at home, uh, or while I was at home, Jen, Jen went back to work. I was doing a lot of fixer projects and it finally got to the point where it's like says, Hey, uh, we're running outta money. And, know, you need to go to work. Why don't you get paid to fix things? Okay, I applied for a position as a maintenance tech for a 97 unit, uh, I'm sorry, a 76 unit apartment complex.

rs for a couple of weeks and [:

And we moved out here and, we've been working pretty much nonstop for the last seven months, . So it's, it's been wild. It's been a wild ride, but I'm, I'm healthy. I am doing amazing with the exception that, like I said, I've, I've gotten off that plant slant diet and I desperately, I'm working to change that, working to get back on that diet, just for the health of my organs and my heart, but for my overall body health.

when you have a transplant, they give you your dry weight, which is the weight that you should be at, given your height, given your, you know, your conditions, everything. my dry weight is 180, actually, I think it's like 176 pounds, but, there's no way I can get down to that. And, and the doctors know that.

t off the diet, started like [:

I'm, again, having problems with difficulty in breathing. but I know that it's all related to my weight that I put on. So, after transplant, it's vitally important. And I, I think, I think maybe deep down for me, I'm doing this again as a test because like I said earlier, when you have congenital heart disease, you push the envelope, you've gotta know where your limits are.

And, I think I'm kind of, I'm, I know my limit is at my weight and it's where I'm at right now. So I've gotta get back down to that one hundred eighty, a hundred eighty two range. and I'll be doing amazing because I've got tons of energy now, lots and lots of energy. I'm physically able to do things that I was not able to do before.

my, uh, Facebook that shows [:

Transplant.

Boots Knighton: Wow,

Jason Crutchley: yeah.

So,

Jason Crutchley: and, and I have

a lot more goals, but I, I've gotta get back to, you know, that, that weight that I should be at.

Um, again, right now just, just the exercise I'm getting at work and I'm like, okay, I'm huffing and, and I'm puffing, but I know it's because I put on this weight I shouldn't have. So weight, creates problems that you don't realize, you're healthy or not. It just creates a lot of problems.

transplant that I was on my [:

I felt so amazing. was sleeping solid at night, just, know, don't know. I don't know if, I've just never experienced that before in life to where now it's like, so. so much more vivid. It's like a blind person that can see all the sudden where it's, oh wow, everything is all brand new. But it was like, life is, is so brand new to me.

and, yet there's days that I go, I, I can't believe where I was. You know, I look back and I go, wow, I lived 40 years on one chamber of my heart, not four one. Like, who does that? That's almost

incredible. But I did it and I did

it with a smile,

Jason Crutchley: right?

Like, I could have easily sat on my pity pot or, you know, just, oh, poor me, poor me, and did nothing with my life.

And I could [:

I had him when he was two. So, you know, he was there a long time in my life. Like I've gone through a lot of, of craziness in my life most people, I don't, I don't know that they could handle that. . I don't know that they would want to, well, nobody wants to, I guess, but I don't know. I don't have regrets.

ple will never have to face, [:

and I faced them and, and I ran with it. Not to say that I'm cocky or arrogant about it, because I don't think about it. It, it's not until I do something like this where I'm actually reflecting on it, that I go, wow, , you know, I really, wow. I always remember, I have no tattoos on me, but I always, I always was like, Hey, if I ever get a tattoo, wanna get a tattoo of my heart, like my original heart.

Until I saw the picture of it and I saw the picture of it. Uh, Jen actually showed it to me when I was still in, in the hospital after my transplant. She goes, she goes, are you ready to, she waits. She was so great about it. She waited until I was like, really coherent, like all the, the pain meds had had worn off.

Like, can make choices. You were balancing. Yeah, I was balancing out. She showed it to me. I went,

oh my God,

Jason Crutchley: that looks like a piece of meat I'd throw on the

grill. .Like it really does. I look at it even

now and I'm

like, there is no way that's [:

heart, it looks nothing like that.

Boots Knighton: it was

not

that.

Yeah. And,

Jason Crutchley: and I'm like, well, there goes that tattoo because I did, I always wanted to have that tattoo on my arm until I saw the picture. I'm like, Nope, nope. Someone at that. Oh, who the hell screwed up?

Yeah.

So, it was,

it was unique. I've been through It's, it's a wild

ride.

Boots Knighton: Well, thank you so much for sharing. if you can believe it, we've been talking for two hours and

10

minutes.

Yeah,

Jason Crutchley: I know.

Boots Knighton: I mean, and there's so many more questions. I mean, we might have to circle back again because, in fact, I, I think we should do that, you know, for a future

episode.

Jason Crutchley: Yeah. I'd love to.

I'd

Boots Knighton: yeah.

Jason Crutchley: I

more bridged. But you really [:

And I think it's important though. I think

those details

Jason Crutchley: are really vitally

important.

Boots Knighton: Well, like I said, I'm building, like a spoken encyclopedia

for people.

Yeah,

Jason Crutchley: I think it's

Boots Knighton: so yeah, listeners will, Jason and Jen and I will make a future appointment. and I will put in the show notes how to, to find them. They mentor, fellow transplant patients.

And then of course you can always reach out to

me.

Jason Crutchley: Thank you. Yeah. Thank you Budd so much for having us on and, and, um, you know, for taking the time to, to chat with us. I love, I love sharing my story. I love hearing about your story. Um, any shared that yesterday with me, so I was able to hear your story? know, it's, it's incredible.

Cause I've always

said I've

to me on your hand. I can't [:

I think that's harder

to deal with

Jason Crutchley: than someone like myself that's dealt with it all their life and, and has learned how to adapt.

you know, in, in dealing with

it.

Boots Knighton: Yeah. Exactly.

So let's, get into that next

time.

Jason Crutchley: Yeah. let's, let's.

let's.

Boots Knighton: And that's our episode for today. Thank you so much for spending a little bit of your day with me. If you enjoyed this podcast, I sure would appreciate if you would go to my website, the heart chamber podcast.com, and make a donation. Also, if you are a fellow heart warrior, I'd love to hear from you.

to my website and go to the [:

Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.

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