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[00:00:00]
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.
I'm also accepting donations on my website [00:01:00] as podcasts are not cheap to produce. I appreciate you listening, so let's get to it.
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
the ones you love. And so today, now I'm interviewing, you know, Jen, you, Jen, and Jason as a couple, and you guys went through an epic, epic event where Jason [00:02:00] had. A heart and liver transplant. So let's just like dive
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.
it was so slow that, uh, you don't, it's, it's not something that you notice every day, but if you look back on a time span, you go, oh yeah, it's, it's definitely happening. so at age six, I [00:03:00] underwent the classic fontan, procedure at ucla. I was the first child to have it done at ucla. I brought Dr.
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?
Oh, I was training heart surgeons. What? Okay. yeah. Pretty cool. So, um, so I did that, and it was successful, obviously, and it, it went fairly well up until, gosh, I was probably about 11 I started 10, yeah, about 10 years old when I started experiencing, super ventricular tachycardias or And so my heart rate would go from, you know, an average of 60 B to minute, all the way up to 200, 250 beats a [00:04:00] minute. and the doctors multiple times to do everything you can think of from blowing on your thumb to ice water, you know, shoving my face in ice water to try to get my heart to convert back to normal scientist rhythm.
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.
Like, and maybe it's because I've grown up into an adult, obviously, but I remember as a kid, like the doctors never talk to me, right? They always talk to my mom. They never include me. I mean, other than, Hey, they're a kiddo, how you doing, kind of thing. But it's now it seems to me like there's so much more compassion, uh, [00:05:00] within the medical community, for the kids.
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.
So, back then of course, when I went through all the, the super tachycardias, , was always, oh, let's talk to your mom about this. Not let's listen to [00:06:00] me and let me tell you what's going on. I remember many times going into the ER with S V T telling the doctors, here's what you need to do.
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[00:07:00] you know, I'm just picturing you as a kid, and you've already been through so much and as you're dealing with all this, were you a normal kid?
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?
Go ahead. You're gonna fall on your face and when you do, I will be there. Right? My mom was super supportive of that, which, really I think is [00:08:00] a way to parent your children that have chds. and I've talked to many, uh, c h D families I, and, and this is kind of one of the big things I really promote with them is, look, your kids, they're gonna know their limits.
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.
She, you know, I went to go visit, it was, you know, oh, here, let's sit down on the carpet and color like all day. Like, really? My brother's outside. He's playing. I wanna go outside and play too. Oh, no, no, no, no. [00:09:00] Well, he's gonna go swimming and I wanna go swim too. Oh. Oh, But you have to be really close to your brother.
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,
Jason Crutchley: we actually, my brother and I did, uh, basketball together. At in school, we, we were part of the team. I wasn't very good, mind you, , but I was still part of the team. Um, football was never like, that was [00:10:00] never really my thing. I I would do like the, the little pickup games that you do with all your buddies and stuff, but that was about the extent of it never really was into, into baseball.
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.
And then beginning of high school, I moved up to Sacramento and pretty much lived there. Majority of my life. I, I had a little bit of extended time in South Lake Tahoe until, ironically, the [00:11:00] altitude caught up to me because of my heart condition. So, those that
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, [00:12:00] this is again, during a time when we didn't have internet, so it's not like my mom had access to look up information like they do now. there was no support group. I mean, I didn't know my first heart friend until I was 40 years
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 [00:13:00] just to add in something. Um, and I was speaking with another heart friend a few days ago, and she, instead of using the word congenital heart defect, she uses the term congenital heart difference.
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 [00:14:00] the heart that keeps
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.
there was a 2% chance that I would make it through. The other option was a heart transplant, which [00:15:00] had never been done on a child at all, anywhere in the world that was gonna give me 1% chance of living. of course, my mom played the numbers game and said, yep, let's go with the classic Fontan.
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.
And, and in fact, one of the side effects from that surgery was the super ventricular tachycardia. which obviously I did get, and, [00:16:00] and we dealt with that. And, um, you know, it was okay. They, finally figured out that they could put me on a regimen of medications that would prevent a lot of it. They had to go in and do, some minor procedures as far as like, um, getting rid of some of the scar tissue, would help with a lot of the and it, and it did.
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.
I'm a pretty fit guy for the most part. I, I enjoy the outdoors. Um, I love hiking. I love biking. I'm real, I was at that, at that time. I was really, really into water skiing, wakeboarding, you know, kneeboarding, like anything on the [00:17:00] water that's my jam. Like, and, and even to this day, I love being out on the water, whether it's on a boat or in kayaks or what have you.
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.
And I'm okay. Great. Now, of course, at this time, 21, now they're starting to talk to me more. Right. And, and of course I kept my mom in the loop. My mom has always been like [00:18:00] right there, my right hand person. I have a very, very, very, very close relationship with my mom. We, we've traveled the United States, multiple times.
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
Jason Crutchley: she was hardcore. She, would always tell us kids, look, I work six days a week, and [00:19:00] I'm like, one day off. I don't wanna spend the day cleaning the house or, you know, or this or that. She goes, I wanna spend it with you kids going and doing something fun.
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.
I had no issues after 21. None was doing great. working in radio at the time, did about anything [00:20:00] you could think of. I was, for all intense purposes, I was a healthy person with a scar down the middle of my chest. And, you know, it never bothered me. as a child, I remember that that scar bothered me a bit.
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?
And these were the same kids that were teasing me as a kid. So [00:21:00] again, I don't know if it's because I grew up in a small town. I was able to really not let it affect me. You know, it was like, oh, okay, so this is how life is gonna be. You're, I'm gonna get teased because have purple lips or because I have a scar down my chest, or, but whatever.
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 [00:22:00] good at what I did. Very good. I was the, the top chauffeur in the Sacramento region. I had other companies that were calling me, wanting me to either come work for them or come and train their guys.
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.
And I told these guys that story and they're like, great, so we put you to sleep. , [00:23:00] it, it was great. but yeah, so that's the first time I was ever starstruck. And then the second time, was when I met Eric Estrada from chips and again, You know, an eighties child grew up watching chips, loved chips. That was, ah, right.
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.
You know, like those are the people that really, really enjoyed it.[00:24:00] but as a wine tour specialist, I gotta go visit some of the most amazing wineries in Napa, right? These are like world renowned wineries and, got got to know a lot of the wine makers and the owners and, you know, have 70, 80, $90 bottles of wine given to me.
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.
so start, yeah, starting about June of 2016, and I was working full-time, coming home, taking care of my home, [00:25:00] and then going over to my mom's and taking care of her and her house and everything that she needed to get done. And then I would get home at, you know, midnight and up again at four, five o'clock in the next morning.
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: [00:26:00] Yeah. And,
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 [00:27:00] you gimme a a rough time? And, and of course that's always a hard question, I think to ask doctors is, is, well, how much longer do I have? Or does this person have, right? Because no doctor in their right mind is gonna wanna say, well, your your person ha you know, whoever has six months to live a month to live whatever.
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.
up. To talk to my mom. And, um, because I think that was like, that was the first time that my mom heard that I heard, you know, what was going on. And so, I asked her, I said, Hey, you know, how do you feel about this? And she says, um, she goes, I'm okay. She goes, I'm, I'm really, I'm okay. said, okay. I said, you know, we know [00:28:00] what's happening here.
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.
We're talking like barely living sick an age that. You couldn't get information. You were having difficulty getting information. I mean, unless you were a doctor, which you weren't, you know, you were trying to [00:29:00] understand everything that was going on. You were an amazing mom. I said, you need to know this.
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.
Then I was gonna come back like an hour and, and pick them up. And as I was Dr. Driving to drop them off, I'd gotten a call from my grandmother and she says, you need to come right now. And, um, it was, it was 1153 [00:30:00] in the morning, and, uh, my mother had passed away and I, I dropped off my clients I told them what had happened and I, I said, you know, I'm, I'm really sorry.
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.
so there was, there was a part of me that was like blessed and grateful that she was no longer in pain. She was no longer suffering. and, of course there was also another part of me that was very sad about that. So moved on,[00:31:00] got to the hospital. Yeah, she had passed. My son was there. Um, my grandmother, my, my grandmother's friend.
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.
and he was just, uh, he was, he was my, he was my best friend, you know, we, we walked to school every day together. protected me. He used to throw little , [00:32:00] little pebbles at me, you know, mean, just typical brother stuff. And so when he had
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
Jason Crutchley: very small town, again, we knew everybody, right? It, it, not only was it a tragedy for our family, it was a tragedy for the [00:33:00] town, right? The whole town, like of shut down, in, in honor of my brother. we had trees planted at the, um, school there. so that was tough.
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.
Dealing now with my mother's death, her passing, getting everything out of her house, you know, and of course everything that [00:34:00] surrounds the whole death thing and, and you know, the and I mean, just closing out bank accounts and this and that and working and taking care of home. So once some of that started to die down, about three weeks later, I'm like, something is, I think I had pneumonia.
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 2017? Correct.
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
Jason Crutchley: sorry, January 27th, 2017. And, and it was literally like three weeks later that I'm like, I, I'm certain I have pneumonia. And so [00:35:00] I went to the hospital and obviously went into the er. The doctors came in, they, you know, checked everything.
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.
I, at this point, I had a very good relationship with my cardiologist. I mean, first day I met him, he came in and said, hi, I'm Steven. call me Steven. He goes, I'm gonna learn just as much from you as you are from me. So, like, that's how our first conversation started. So we were on [00:36:00] a, you know, first name basis and it, it was fantastic.
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
Jason Crutchley: at some point in my life, [00:37:00] I'm gonna have to have a transplant. we never knew when that was gonna happen.
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 [00:38:00] the transplant team came in, they saw me, they, they did all their tests and came back to me and they said, okay, so we have a couple of things going on. I'm like, okay. They said, um, half of us think that you need the transplant. The other half thinks that you don't, but the one thing that we all can agree on is we're not gonna do it.
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.
Jason Crutchley: And, and they go, oh, and by the way, um, have you ever heard of cirrhosis? I'm like, yeah. My mom just died of it like three weeks ago. said, oh, you have I said, whoa, whoa, whoa, whoa. [00:39:00] I'm like, my mom was an alcoholic, like a major alcoholic. She was a day drinker, a night drink.
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.
You need to understand you don't have cirrhosis because of your lifestyle. You have it because of your heart [00:40:00] condition. And I'm like, what? And they go, yeah, it's actually specifically because of the surgery, the fontan, the classic Fontan that you had. And so I'm like, okay, I need you to explain this to me cuz I never
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.
They look at the whole body. They don't, I mean, even though you may speak with a cardiologist that's dealing predominantly with your heart, they are now starting to take into [00:41:00] effect it affects the whole rest of your body. they used to never do that as a child. No. It was, nope, I'm a heart doctor.
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
And, and was fine. I was totally fine with hearing that I needed a heart transplant. I was ready for that. Okay, [00:42:00] no problem. The liver one kind of freaked me out because all my life, all I've ever dealt with is my heart condition. , I was perfectly healthy other than my heart condition. And even now, when it comes to my heart, no problems whatsoever.
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.
I don't, I have no idea. I have no clue. I, I haven't even looked it up because I think maybe I'm just afraid that if I were to look it up and go, oh yeah, I did feel that. Oh, I have felt that, you know, like, I don't know. So, so they, uh, they sent me down to this was in, it wasn't until July that I had my first appointment, July [00:43:00] of 2017 that I had my first appointment to Stanford.
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.
do you tell a go, go go person to settle down? So I did stop working, and was doing all kinds of fix it, repair things around the house and, you know, with what I could and with my limitations, um, which were gradually getting worse day by day. But again, like when I was a child, I didn't notice it every And it wasn't until just prior to my transplant that I looked back and went, oh, yikes. It's, it's getting really, know, [00:44:00] I've really gotten declined. I've really gone downhill. Um, and I, I'll kind of get into more of that here in a, in a moment, so July of 2017 was my first appointment. I think it was like July 20.
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.
Never like to go see a team and have to do all these tests. And so I was extremely impressed. just, uh, their team there just blew me away. Their, I can't say generosity, but just the way that they, didn't look at me as a number. They looked at me as a patient, and not only did they look at me as a patient, but I was a, like, I was a [00:45:00] superstar to them, right?
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 [00:46:00] were, they were adamant, about getting everything fixed, really. Everything cool. I've been waiting for
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.
Um, that was September. Mm-hmm. of 2017. And then by December, the liver guys listed had me listed for transplant. and the har guys were still kind of being wishy-washy. Yeah. On the fence about wanting to list me, but because the liver guys did, the Hart guys went, oh [00:47:00] shoot, we have to catch up because the Hart guys take priority.
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.
and so whatever it, it like didn't really matter, but it did. So anyways, I kept reading, kept [00:48:00] reading. I come across hepatocellular carcinoma and I went, okay, I know what carcinoma is. So, of course now this is
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
Jason Crutchley: yeah. Oh, You're yeah. You're not the only one. No, I did I tell you that day, okay. So I told Jen. Yeah, I told her, but I was like, I didn't want to [00:49:00] tell her. Right. Because, I mean, I didn't know. I, I didn't. So I'm one of those people that, and, and especially with my grandmother, cause my grandmother really freaks out.
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.
But, uh, before the doctor called me, so the doctor calls me, says, okay, so here's the deal. She says, you have a 1.8 by 1.8 centimeter, cancer your liver. There is nothing that we can [00:50:00] do until it hits two centimeters. And then at that point, we can start chemoradiation, you know, whatever they've, they've gotta do.
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.
Jason Crutchley: And, and so again, the whole, you know, it's the whole [00:51:00] body. It's not, it's not just the heart, just the liver. It's how has my heart condition affected my entire body.
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.
So, um, on January 27th, at 1153 in the morning, which was [00:52:00] three years to the exact day time, hour second that my mother passed away, got a phone call that said, Mr. Crutchley, we have a heart and liver for you. It was a Sunday morning. I was at work, Jen was at work. We were, uh, I I had actually called my cousin and my uncle and aunt to come over for, for lunch.
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.
So because of that, it's considered a high risk, transplant. And if you are ever offered a high [00:53:00] risk transplant, you have the opportunity to decline it because of it being a high risk and it won't affect your status as far as where you're, you're at
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.
in my case, I was declining so rapidly that by this point I was on four liters of oxygen, pretty much full-time. and I could. Not bend over and tie my shoes. I could not put my socks on. I couldn't reach into the, the washing [00:54:00] machine and pull out laundry, basically anything that had me to, to bend over or stoop, um, I couldn't do any of that because it, it just, I couldn't breathe, like at all.
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.
It's about a two and a half hour drive. And [00:55:00] a Sunday, it can take up to six to seven to eight hours to get there because of all the Bay Area traffic that was up in Reno or in Tahoe heading home. For, you know, the week. So I asked him, I said, Hey, do you like, do you need to call Life Flight? I, I'm a member of Life Flight.
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?
said, I got the call. have a heart and the liver. [00:56:00] my , my,
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.
It's minute you're, you're super excited. One minute you're scared to death. One minute you're, you know, laughing about it. One minute you're crying, you know, it's, and it, but it's just constant, constantly revolving. And, and it, for me, like that emotion that lasted all the entire, all the way up into that night that, you [00:57:00] know, we were trying to sleep in the hospital.
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.
So, so yeah, so we, uh, Called the kids, called all of our support teams, you know, notified everybody that we had to started driving down there. Jen, myself, and the kids. Jen has two kids. Um, and then I have my one, so we have three kids between us. Kind [00:58:00] of how we met is my daughter and his son we're in kindergarten together all the way up to fifth grade.
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.
Elizabeth came and got me and said, Hey, my friend, fell and got hurt. You need to help him. And so, that's where I started doing the checkpoint, looking to see what was injured, what was possibly broken. And he comes over and you're late. You're late. This is, this is my deal. I've got this. And then he does a MacGyver and, uh, takes a cardboard and starts wrapping [00:59:00] his arm into, in like a makeshift, split.
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?
And, um, she's like, yeah, sure. So we exchanged numbers and we're driving [01:00:00] home. She, she texts me, she goes, Hey, uh, I'm not following you, but your neighbor. And I went, what? There's no way. There's no way. Yeah. We were, we were both in Roseville school district living outside. Yeah, we lived outside the school district, so we both had to do like inner city district transfers, right.
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 [01:01:00]
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 [01:02:00] go there. So went there, got checked in, and uh, they were like, oh, yeah. And they, there, they kind of led us to where we had to go. So they took us to a, a room, which, which was, you know, any regular room. And, and sure enough, I mean, from there it was just go, go, go, go, go, go, go. They jumped into action and okay, we gotta do this test and this test and this and this, X-rays and bloods and all this stuff.
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
Jason Crutchley: dunno, hang out, family, friends, whatever. So, um, that was when, um, you know, again, he kind of reiterated the whole yes, you're, you know, he had [01:03:00] this, uh, this IV drug issue. And so they had to go over all that they told me is, oh yeah, um, the doctors are gonna fly over and look at the heart.
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.
This will be a walk in the park. And, so it, it, it was really [01:04:00] like that night we just held each other, you know, we, we laid in bed and we just held hands. And I don't think we really did a lot of talking. We just kind of, we were, you know, I think we were just taking in the moment with each other and, Nothing, uh, nothing crazy.
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.
I never ever felt that I was so sick that I needed to [01:05:00] have a heart transplant. and then , remember assigning the, you know, all the, the forms that you gotta sign right as you go through any kind of surgery. And I remember telling my son, I said, you know, son, one of these days you're gonna buy a house and you're gonna think that you're signing your life away.
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, [01:06:00] yeah, I just went in. I was, I was 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.
And uh, I get in there and I'm like, this is such a small, or, and the guy, the, the doctor's like, oh no, it's, it's perfect. I'm like, Yeah, but they told me that there's gonna be like 30 to 40 people in here. And they said, oh yeah. I'm like, there's no way. [01:07:00] Like there's, it looked like it was maybe a 10 by 10 room , maybe it was my perspective.
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.
Uh, You know, we're onto the, the hospital table, which shocked me. That was the first time I laid down on a, [01:08:00] on a hos on a or table. it was actually comfortable. And I'm like, this is weird. Like every other one that I've laid down on, it's been hard and cold and uncomfortable.
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.
And right about that time is when, when they put me under and, and I'm like, okay. And I, do remember saying a prayer just before I went under and, um, again, still very confident, confident that, that it was gonna turn out okay, that there wasn't gonna be any problems. And then I woke up and went, holy moly, [01:09:00] what is gone on , it was, it was the first time I'd ever looked at him and saw what fear look like
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.
So, all that leads up to ICU U delirium. c u delirium only happens in adults. It does not happen in children. So because of that, I'd never experienced it before. I didn't even know [01:10:00] it existed. I didn't even know, like nobody had told me about ICU u delirium the, you know, PR live coming up to my transplant.
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.
Um, it was a very dark room. There was one candle that was lit and that, that candle was like, was very hard on my eyes, was very hard for me to see. And [01:11:00] then I started realizing that there's bodies on the ground and the Hispanic male some tequila, poured tequila on a rope that led up to one of the bodies, and then lit that rope on fire and it, it caught that body on fire.
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.
in my, in my icu, well in my delirium, he was hacking into Stanford and was selling, medical information to the black market. the black market was telling me to tell him needs to pay them more money or needs to give them more, more information [01:12:00] or else they're not gonna give the doctors access to my medications.
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 [01:13:00] so swollen. I couldn't hold a pin or anything to, so, yeah. And even like, we were trying to play charades, like we tried a million different things. she was trying to sign to me and I couldn't, I'm like, I don't understand sign language, you know, like it's, there was no way for me to tell. And the, the thing about that is that, The doctors would come in every day and they would ask me very basic questions.
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
Jason Crutchley: here at Stanford. had my transplant. It was two days ago. You know, or whatever today's date is, this date. reason why the doctors are asking you this is because they're trying to determine if you are in delirium or not. [01:14:00] And again, I knew none of this, right?
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
Jason Crutchley: ICU delirium that, that almost all people go through is that either the doctors or their spouses are trying to kill them. In my cases, it was the doctors and the nurses were trying to kill me. the way that they were [01:15:00] trying to kill me was through my i, my iv. They were, you know, gimme meds, my iv.
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
unfortunate and this probably like you just alluded to it, [01:16:00] you developed P T S D, which we can get to
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.
Crystal clear to me. But, and even now, like I look at him, I'm like, what the heck was I trying [01:17:00] to say here? You know? And she goes, yeah, that's what I was trying to read. And I'm like, okay. So, the transplant happened, um, it wasn't until, February 17th, so that window, he could speak. . And then, he was getting sick and in order to protect the organs, they had to, up his medication in order to protect something was going on because he was going in, in and out of fevers.
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.
And so, I made that decision to, to trach him without him. That's the first time that I had to step in say, I'm making a decision in order to save [01:18:00] him. And he woke up. He was so frustrated and angry because Jason is so vocal and verbalizes all of his thoughts, feelings, emotions. I know this medication is affecting me this way, this changed this because I know how my body functions.
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.
I couldn't communicate. So that's where, he got lost in his head. That's where I, I had to go everything I had learned from him over the 12, 13 years we were [01:19:00] together. And music was something that he could relax to and it wasn't relaxing him. then, you know, find that medium to where it was jazz music.
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 [01:20:00] know, perked up with his energy levels and during the day because of, uh, having the sunshine in the morning, he was a morning person.
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.
So it's everybody's different, right. And, and of that, everyone reacts differently with the medications and, you know, their organs and what have you. So, my transplant, yes. Immediately after transplant, I was awake, I was alert. were, [01:21:00] were going really well. . And it wasn't until, day after Super Bowl Sunday that, that I declined and declined quickly.
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
Boots Knighton: So I'm thinking arteries were [01:22:00] occluded or
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.
Mm-hmm. and rejection, is rejection's very much misunderstood. everyone thinks, oh my gosh, you have rejection, that's it, you're done. No, it's not, it's not the case. All the rejection [01:23:00] is basically is like, imagine that you're on a train and the train is just cruising down the path and something blocks that path, and now the train has to divert and go a different route.
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.
sometimes it's adding another medication, sometimes it's getting rid of one. You know, it's, it's a fine balancing act right with transplant because they want to keep you healthy enough the slightest bug isn't going to ke kill you. But at the same time, they want to keep your immune system suppressed enough that it's not gonna attack your new organs.[01:24:00]
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.
Your body is still trying to get used to it, even though it takes six weeks to [01:25:00] heal. it's still, it's, it's, your body goes through a, a major trauma. Right. Major, major trauma. Not just because of the fact of the surgery, but also because you have a foreign object. You have a,
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
to, if you've never worn one, they're a challenge, you know, especially in my case, cuz I had to learn how to walk all over again. had my feet felt like [01:26:00] they were cinder blocks, they were so heavy.
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.
So, I have since like regrettably gone kind of back over to more of a meat potatoes diet, but I'm, I'm trying to get back onto my, my, uh,[01:27:00] plant lamp because it, it, I was much healthier. I, I felt it, it, like I could see it. and so again, a lifestyle change, right? Like, and we didn't eat out.
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, [01:28:00] all that
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
Jason Crutchley: does. But you have to do that. So it is a huge lifestyle change. Anytime I go out now, and even now, uh, four, [01:29:00] I'm, I'm four years post-transplant at this point, a little over four years.
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.
It's death for us because it's, again, it's a mold fungus. It's very, it's microscopic so you can't see it. But [01:30:00] again, it's found in a lot of soils. so anytime I mow the lawn, if, you know, we happen to be out and let's say maybe there's a, a landscaper nearby that's mowing a lawn, you know, anywhere nearby, I gotta stay away from it because a aspergillus get to get stirred up and into me.
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.
If you're driving through road construction, you've gotta turn on the circulation in your vehicle [01:31:00] that you're not getting the outside. but right after transplant, they're so adamant about it that it's, it's actually you, you become like a germophobe and a and very paranoid with that kind of stuff.
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
know. Mm-hmm. , you know, you can't, you can't just [01:32:00] think,
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.
I was a roadblock to many of our friends, because the, when the, I spoke to the surgeon, the surgeon says, when we give him to you, you're responsible for him. And that was a big deal. I had to make sure that that responsibility [01:33:00] that I had was taken seriously and educate all of our friends as to, you know, when to visit ,
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
Jason Crutchley: so key with our friends, and, and even our family. I mean, there was times that, you know, my son would slip up and maybe he wouldn't wash his [01:34:00] hands. And it's like, Hey, I need for you to wash your hands. You don't understand how important this is.
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 [01:35:00] you're not mentally prepared for it, they're not gonna do it. If you are not a stable, a mentally stable person, they're not gonna do it. but the psychologist also to speak with a caregiver Yeah. To make sure that they're strong enough, a as well. Mm-hmm. . So, and that became that we understood very clearly, is how strong is your for support?
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?
You know, uh, we had, we had a friend that literally was telling other people, oh, well they're only raising, fundraising for, for his transplant so that they can continue living [01:36:00] their lavish, lavish lifestyle. I went, excuse me. So we had to fundraise for the transplant because there's a lot of things that insurance doesn't cover during transplant.
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.
we were paying our rent for our house back in Sacramento and food back in Sacramento for our kids that were still living at, at home.[01:37:00] So, you know, it, it's, and I left my job and she had to leave her job. She actually got let go of her job because of me and my heart and my transplant.
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?
Right. Just so that way we had, we had money for transplant reasons, you know. and so we were using a, a, uh, a thing, for transplants gave us a 5 0 1 , um, tax write off thing, [01:38:00] that people could, could, know, deposit money into. so they would get a tax write off and then, but the funds were specified only for transplant use, which means we would've to pay for it upfront and then present them with a receipt and then they could reimburse us.
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.
Boots Knighton: It. It's really [01:39:00] amazing how like, when, when the rubber really has to hit the road. it's, it's, it's kind of, well it's heartbreaking
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 [01:40:00] expect that expect that.
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.
Yeah. Mask up. so they said, Hey, you don't have to wear the mask. Can I go back to work? Absolutely. Okay. Can I get my commercial license back? Cause I was a, a commercial license driver to drive our bigger bus limos [01:41:00] and stuff. Yeah. Okay. So start back at work, start back to driving limousines again and about three weeks later, COVID the country.
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.
for the most part, company actually shut down. so I actually told my boss, I said, look, still [01:42:00] on disability. Go ahead and give the work to the guys that need it. I'll back off and let them, you know, let them work. I've, I've got an income, basically. and then of course it was, I don't, I didn't even think it was like a month after that, and they had to close the, the doors altogether.
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.
Got the job, loved it, did great with it. And, now, uh, the company that we work for, uh, offered Jen and I work for the same company, and so they offered her a raise and a promotion to move out here to Virginia. And so we came out here, we tested the waters for a couple of weeks and [01:43:00] said, okay, le, let's do it.
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.
So they want me to stay right around a hundred eighty, a hundred eighty two. Which I've been able to do all the way up until I moved out here. and then like, again, got off the diet, started like [01:44:00] just, even though I'm getting a ton of exercise at work, it's the dieting. So I'm now up to like 200 pounds and I'm going, Uhuh, this ain't working for me.
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.
In fact, I have a, a video on my, uh, Facebook that shows [01:45:00] me, you know, chopping wood and. You know, like that's stuff I never would've done prior to transplant. I've gone out and I've actually ran a 5k, something I've never done before.
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.
So, there you go. There's my one get out of this whole program is, uh, stay a good, healthy weight, eat good, and, uh, get plenty of exercise. . You hear doctors say that all the time. You see it on TV all the time. Oh, it's so important. I, I can't even begin to tell you how true that is. And even when I was doing, when I, that first year after transplant that I was on my [01:46:00] plant slant diet and the second year, mean, I was in my prime condition.
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 [01:47:00] have, but I didn't. I had a lot of challenges in my life, between the death of my brother, the death of my mother. We all deal with death in our life in some way, shape, or form. I, I even failed to mention that like months after my mother passed, my dog had had died, and I had him since he was 16 when I had to put him down.
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.
Not by any means it's God gave me this, this gift, and I, I call it a gift. Some people look at it and they go, oh my God, got cursed. You didn't get a gift? No, I got a gift. And I say it's a gift because I've, I've learned to face challenges that, most people will never have to face, [01:48:00] never want 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
Jason Crutchley: like, there is no way that's [01:49:00] a heart. It does not look anything. Like what if you were to look up online, you know, anatomical
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
can go on and on and on. I mean, is not the version I was gonna give you. The, the version I was gonna give you is, is so much more bridged. But you really [01:50:00] wanted me to go into detail about a lot of things that, I traditionally just kind of glance over, you know?
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
Jason Crutchley: been fortunate because I grew up with my heart condition, right? Like it's, it was never a surprise to me on your hand. I can't [01:51:00] imagine the shock that, the mental effects that it had on you because you didn't, you didn't grow. It was like overnight. Bam. Hello.
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.
Would you like to share your story on this podcast? You can either send me an email at boots the heart chamber podcast.com or you can go to my website and go to the [01:52:00] contact link and leave me a message there. There's also a way to leave via voicemail on my website. I'm so glad you joined me for today.
Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.