The Balance of It All- with Jake Chico

Today, Jake joins us to share his perspective on his heart journey and the path it has led him down. From navigating the transplant evaluation process to reflecting on what it all means for his future, Jake offers an honest and grounded look at life in a complex season.

He walks us through his recent appointments, giving insight into what transplant evaluation can look like, while also opening up about his mindset along the way. Jake brings a refreshing balance — reminding us not to take everything too seriously, while still honoring the weight and reality of what he’s facing.

 If you or someone you know would like to be part of the podcast you can message both Meagan and Amy at:  candidhearts25@gmail,com

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My HLHS Diary- Amy Erhart Cunningham

My HLHS Story- Meagan Houpt

Transcript

Jake Chico

Welcome to Candid Hearts conversation in CHD, where real stories meet real hearts and nothing is off limits. We are your hosts, Amy Earhart and Meagan, Houpt, and every other week we'll dive into the moments that broke us, the ones that built us, and the people who remind us that even on the hardest days, hope still beats strong.

In this space, we have honest conversations about life with congenital heart disease, the challenges, the triumphs, and everything in between. These are raw, heartfelt talks, all centered around the heart because behind every diagnosis is a life, and every life deserves to be hurt. This is candid hearts.

These are our conversations in CH. D.

Jake: How are you guys?

Meagan: Good,

Amy: how are you?

Jake: You, I'm good.

Amy: So welcome to the podcast. Excited to have you.

Jake: . My name's Jacob Chico. I'm 32 years old. CHD patient. I have double outlet right Ventricle and congenitally corrected transposition of the great arteries. There's probably some more, but it's not a competition,

Amy: that's real.

Meagan: I think we talked about that in an episode, actually.

Amy: We did talk about that in an episode, how it's not a competition. .

So what has been up in life, Jake? I know that you've had some things come up, but I, are you willing to talk about that and the process that you've been through recently?

Jake: Oh yeah, sure. Life has been just grand was doing pretty well in life up until seven or eight years ago, and I'd started developing arrhythmias.

That kind of kept getting worse and so I had to get a pacemaker for the first time. So that was something new in life. Then my pacemaker depleted my right ventricle because I was only

Meagan: really,

Jake: yeah, because I was only based on one side at first, so I had to go back in there not even a year later.

And just pace both sides. And that cleared some stuff up, but that also opened the door for things like heart transplant and LVADs and maybe some other things down the line that I had never really been talked to with me about before. It had always been like a, that's the last resort. That's not, it's that's nothing we ever have to worry about.

And so I went along with it. I went into heart failure around the same time and I stopped working. So that was a huge adjustment in life. And then I was just chugging along there until in the last two years. The arrhythmias were getting a bit worse, so I got an ICD this time last year.

Which was fun. Nice little quick in and out procedure, but it again opened the door towards transplant.

Meagan: does each thing open the door more, if that makes sense.

Jake: I'm not sure because personally for me, that's a door that's barely been opened.

Meagan: Yeah.

Jake: I really, I don't have any interest in it.

Amy: Okay.

Jake: Probably because I went 26 years without having to think about it. So yeah, it's just been chugging along this past year and I just finished up a week at Brigham and Women's for a transplant evaluation.

Meagan: How was that? I won't even can't even imagine.

Jake: For me, and I'm sure maybe you guys are the same way, but also maybe you've learned to mature in life, but IVs and blood draw are my big two, like bugaboos.

Mostly because as we all know, it's a lot of trauma that you get growing up with the CHD. And I don't like when they tell me what they're doing. You get one poke, that's it. Don't wiggle around in there. That's weird. Don't tell me that you're doing it or say oh, I thought I had

you know what I mean? Yeah. See. Exactly. You can't even really even talk about it. It's just, ugh. But that part was pretty good. I did tell them that as a 32-year-old man I'm accustomed to being pampered by children's hospitals my whole life. And so I said, do you have, the numbing spray and other things?

And they were like, no, . You'll be okay. Promise. Oh, I, so I was like, okay, I'll be fine. You're right. And I was,

Amy: I have a question. Before the arrhythmia started, seven to eight years ago, had you had any prior?

Jake: Probably,

Amy: but nothing that you recall significant?

Jake: No. And I, even when I went into heart failure, I didn't know, I didn't present I didn't retain fluid in my legs or my, belly or anything.

Amy: So how did they discover that?

Jake: I stopped sleeping or I couldn't lay flat and I was coughing a lot, so I was just, wasn't really sleeping a lot and just going back and forth to my job. And . I was mowing my dad's lawn because I lived with him and I couldn't even push the lawnmower.

And so I called him and I told him that, and he was like, are you serious? And I said, very much and then I went to the doctor and he called my cardiologist in Boston and was like, something's wrong, but I can't tell what. So I went down to Boston and they admitted me right away.

Amy: So That's so interesting that the body just automatic all the sudden, does that

Jake: Yeah. And to this day when they ask me, I'm like, Nope, there's no swelling here. . And I don't feel it.

Amy: Yeah.

Wow. So then with the.

Pacemaker that you had placed. And then obviously the ICD you were having breakthrough arrhythmias through the pacemaker, which is then why they placed the ICD 'cause they could not keep 'em under control.

Jake: Yeah. It was super ventricular tachycardic.

Amy: I had that when I was little.

Jake: Yeah. So that was fun. Yeah. We played watching those for a year, and then my doctor was like, yeah, let's just do the procedure for the ICD. And I was like,

Amy: yeah,

Jake: okay. It's like pretty quick.

Amy: Did they put you on medication, any arrhythmic medication at the time?

Or they just thought that either the PACER or the ICD would do the job?

Jake: Back then I think is when they started me on the bisoprolol. And then we played around with some stuff, but I've been on Entresto for three years now and that's been pretty good. Now I'm just on the, for this, I'm on Entresto and the Metoprolol.

Amy: That's it.

Jake: No, I'm on other things.

Amy: Oh, I was gonna say, oh my gosh.

Jake: No, I'm on other things, but for not a lot, but I'm on like seven things.

Amy: Okay.

Jake: Yeah.

Meagan: I feel like we're all on something.

Amy: Yeah.

Jake: Yeah.

Amy: If we're not, we're really lucky.

So essentially the arrhythmias are what is pushing your transplant evaluation?

Jake: I think that's a part of it. I think the other part of it is a slow progression downwards over the years, which is what's supposed to happen pretty much with us.

And I still feel pretty, good. , My function's a little bit down, but it's not that accelerated at the pace where I have to really worry about this right now. It's more of a get the information now while it's easier type deal.

Meagan: That's, so do they list you or do you still have to say yes or no?

Jake: They said they could list, they said they could, they think that they feel strongly that it would be able to successfully do a transplant with me and that they would list me. However, I still have to make that decision. I'll have to go back in two weeks, which I hope I don't have to make the decision then because I'm not ready, but

Meagan: yeah.

Yeah. That seems so fast.

Jake: Yeah. It was really weird on Wednesday when I was in the hospital. I came back from something and the understanding that my parents had gotten was I have to make that decision while I'm here. So that was a lot happy. That wasn't true, but

Meagan: yeah. I'm shocked that they told you

Jake: that's Yeah, that's what I had explained to my parents.

I was like, that, that you can't do that. They can't do that.

Meagan: Yeah. To make a choice that fast.

Jake: Yeah. If I was really sick, I'd get it, but

Meagan: Yeah.

Jake: Yeah. It was a fun week, .

Amy: Are you still not able to work currently because of everything that started and now that it's just you're where you are?

Jake: Yeah, pretty much.

Amy: How does that feel? Can ask that at 30?

Jake: It's weird. I feel let me back up. I feel like growing up with the CHD wasn't really limited in anything. I just couldn't play sports, right? And that was pretty much the limitation and that was weird as a kid at first. But now I have some restrictions . There was a part of me that thought transplant equals running up and down a basketball court, which isn't true,

Meagan: so what are your limitations now ?

Jake: I just can't do as much.

Also, I've been having , fainting spells because I get up too fast i'm working on that. The limitations really is just the salt intake. I'm not gonna say I follow that too strictly.

Amy: If I was ever put on a salt intake restriction, I would be in some serious trouble. The amount of fricking pickles I eat

Jake: no, I, there's a video somewhere on my computer here, we home from Boston when I first went into heart failure and I was admitted for a week or so. The first thing my dad did when we went home is. I lived with him was, he just went through everything with salt, like over a certain amount and threw it out.

What am I supposed to do?

Meagan: Everything has sodium in it though.

Jake: Yeah, I kept up with the low salt diet. I probably did it for three or four years, but it also got hard to do that.

During COVID, I was isolated and I was just eating five pound bags of gummy bears mostly.

Amy: What adults

do,

Meagan: I'm on a diuretic and all I want is salt all the time.

Amy: Really.

Jake: I've come to realize not that I didn't know this, but the all, the diuretics are not equal.

Meagan: true.

Jake: And I take furosemide, but it's pretty.

Light work. It doesn't really, I, if I take it later in the day, I'm not gonna be like, oh, I gotta run to the bathroom 20 times.

Meagan: Yeah.

Amy: So with the process then, have you had to, or have you chosen to quit any extracurriculars? You don't have to name what those are, but if you did any extracurriculars, it doesn't matter, like alcohol or whatever.

Jake: Amy, I'm a, good Catholic school boy. Okay.

Amy: Okay.

Jake: I did 18 years. My extracurriculars are pretty non-existent.

Meagan: Don't believe you.

Jake: I no, I really don't drink alcohol anymore that much. Probably partly 'cause I'm on a GLP one as well.

Meagan: Yeah.

Jake: That really helped. Now I just have one or two when I do drink and that's fine.

Meagan: Yeah,

Jake: but I also sometimes get drunk, which is not fun.

Amy: No, that's awful.

And the hangover's awful.

Meagan: Yes.

Jake: Hangover. When you have a beer or two at two in the afternoon and you're hungover by 430/5 is awful. Yeah,

Amy: I don't miss it at all.

Jake: No. There's other beverages that tickle my fancy more these days,

Amy: right?

Jake: That H2O, it's a beautiful thing.

Amy: So what prompted the GLP one?

Jake: I was over 200 pounds.

Amy: What?

Jake: Yeah, I know.

Amy: I would've never guessed.

Meagan: Really.

Jake: Really?

Meagan: When

Jake: before I met you. Oh,

Meagan: okay.

Amy: Was that because of the heart failure or, legitimate weight gain?

Jake: I think part of it 'cause I lost so much for the heart failure and then I think.

After I was diagnosed and back home and getting back into the swing of things over a couple of years, I probably, and COVID happened. So probably low activity. A lot of carbs.

Amy: The gummy bears.

Jake: Gummy bears and the no free ads, but the Digiorno's and the Totinos and like the Doritos and the Fritos and those.

Meagan: All those. All the those.

Amy: That was real in COVID though

so what else do you do is just snack all day?

Jake: Nope. I was shacked up in my aunt and uncle's unused apartment by myself for nine or 10 months.

Amy: Yeah,

Meagan: it was a long time.

Jake: I'm not gonna lie. I found it quite enjoyable. I really enjoy solitude.

Amy: Are you that big of an introvert?

Jake: Yeah.

Amy: Are you really?

Jake: I don't present as such.

Amy: No, you do not.

Jake: I don't. I have to be really comfortable, I think, to not be an introvert.

Meagan: You are pretty extrovert at the conference.

Jake: . Is that good or bad?

Meagan: No, it's good. It's good. It means you were comfortable '

Jake: have you guys. Ever had a pulmonary tion test?

Amy: Yes.

Jake: That's what they did this week. I've never had that.

Amy: They've never done one on you?

Jake: No. Blow into the little machine with or whatever, but no, this, they had, they put me in a little box.

Amy: Yep.

Jake: Yeah. That's not cool. That send me some literature before my hospital admission please.

Amy: Yeah, if you feel like you wanna pass out, that's the test

Jake: you want. What I was watching the morning, the night before and the morning of the new fear factor.

Amy: Oh yeah.

Jake: No. Which is not a good show, but just the premise of fear factor, then putting me in a box.

Meagan: Yeah.

Jake: And also the woman asked me if I had claustrophobia.

Meagan: Oh,

Amy: I am claustrophobic. But I think it's, you can move around enough in those that it's not bad. What I don't like one, the amount that you have to inhale, exhale, and hold, like you're going to die.

Jake: Yeah.

Amy: But when, then they, there's that one test where they block it off, so you're just pushing into blocked air.

And I'm like, can I do

Jake: this? I'm,

Amy: oh my gosh, it's the most uncomfortable thing ever.

Jake: So very uncomfortable for many different reasons. And also, I broke out in a glorious sweat within 30 seconds of just being in the room. I went to the big chair that was out in the middle of the room. She's oh, no, you're in the box.

And I was like, oh, I didn't sign up for this. But yeah, that was probably the worst thing. Mostly because I already know I, I don't have a good output and I'm fighting a computer that's telling me I'm doing it wrong.

Meagan: Yeah.

Jake: Because God forbid I take a breath in when you're telling me to push out for 30 seconds.

Amy: Yeah.

Meagan: No, I can't

Jake: I don't know how to tell myself to blow out. I don't know. That's what I learned. I, that's not, I don't have that in me. I've never, why would I ever do that?

Meagan: Yeah. Why would you think about it? We just

breathe.

Jake: Yeah, exactly.

So that's what happened.

She was like, oh, gotta stop it. You took a breath in. I'm like,

Amy: and they will make you redo it. So I

Jake: With no breaks.

Amy: Yeah. Yep. I know I used, I think I had to have them like once a year and they would always go for my last one and they would tell me, we're gonna try again.

'cause we wanna beat it. I'm like, okay. I'll try.

But yeah, they're not fun.

Jake: No. I'm not in the interest of setting personal records at the at the heart doctor.

Meagan: True.

Amy: I'm not in the interest of setting personal records on a stress test.

Meagan: No. The

Jake: cardiologist. No, that too. And that happened to me in my last one. The last one I did wasn't I did do one with admission, but the, what one did before that, they were like, Ooh ooh, you're 30 seconds away from how far you went last time. And I'm like, I I'm done. I'm done.

Done. I'm done now.

Meagan: Yeah. Don't tell me I'm just done.

Jake: Maybe it's 'cause I haven't played sports my whole life, but I don't do well with that kind of pressure.

Amy: Yeah.

Jake: Nope.

Amy: So in this evaluation, is it just for heart or heart, liver or?

Jake: Just heart for me.

Amy: Oh, you, your liver is good. You've never had any issues,

Jake: surprisingly, Amy.

My liver is good.

Meagan: You don't 'cause you don't have the fontan.

Jake: I don't. I don't have the fontan.

Amy: Okay, that's true.

Jake: There's a lot of other things in life.

Meagan: Yes, but

Amy: sure. But

Meagan: I was

Amy: fontan.

Jake: No, no font

Meagan: familiar.

Jake: No, I know. It's such a disappointment.

Meagan: I know. No,

Amy: are you kidding me? I wish.

Meagan: Okay. But is a heart versus heart liver easier?

I'm assuming?

Jake: I don't know, but me as a person is certainly not easy. 'cause my anatomy is

Meagan: yes, that is true.

Jake: So twisted up. That's why I was surprised they even said yes. I didn't want them to just explicitly say no,

Amy: is your stuff flipped?

Jake: Yeah. I have Citus and versus as well

Amy: everywhere.

Jake: Yeah, actually they actually told me I had Asplenia and then they found that I had a spleen within the last four years. It was just on the other side. I don't know why no one's ever seen it or caught it before. I've had plenty of ultrasounds in tests and I've been opened up plenty of times throughout life.

Amy: You're freaking kidding me. That is that. So I have this sinus versus and Asplenia. Yeah. I don't think I've ever met anyone else.

Jake: Amy, are you sure?

Amy: Yes.

Jake: When was the last time they checked?

Amy: I guess I should ask.

Jake: I wanna go ask

Amy: because I wanna tell you what, my fricking immune system is pretty hefty for not having shit.

Jake: Me too. Turns out., I was treated my whole life as not having one. It was,

Amy: is it underdeveloped?

I

Jake: don't know because they did say, sometimes you can have the asplenia I guess, and all that, but sometimes you just have tissue. .

That's just kinda in the body floating around. But no, I guess I got a full functioning one, which sucks for me because, I'm already a liar in life, who isn't? But I've been telling a really big lie

Amy: not to your fault,

Jake: used to be one of my opening wines, just to like people in general, like I don't have a spleen.

Meagan: Oh yeah. You're a fun fact about you.

Jake: Fun fact.

Amy: My gosh.

Jake: Yeah.

Meagan: That's going in the promo.

Jake: Yeah. But yeah, , the pulmonary function test, a stress test. I had a cath, but I enjoy those, so that's no big deal.

Meagan: Ew, you enjoy a cath

Jake: conscious sedations. Pretty cool.

Amy: Wow.

Meagan: No.

Amy: So where'd they go in with the cath?

Jake: I have full occlusion, like my thighs since I was a kid.

Amy: Okay.

Jake: Yeah. So they've been going through the neck.

Amy: Okay.

Meagan: Yeah. The last one I had was through the neck and I'm like, this

is weird.

Jake: I may have been a little bit more conscious this time around, but I kept my mouth shut for 15 minutes and then I said, can I have some drug more drugs, please?

Meagan: No,

Amy: I would wanna be put out I don't know. Nice. Especially in the neck. Oh, the groin I think would be different, but the neck eye could not, I would just wanna fidget the whole time and mess it up. Probably.

Jake: That is hard not to fidget. Especially when you're a little bit more conscious than you are sedated.

Meagan: Last cath I had, they woke me up in it. So I was put to sleep and then they woke me up and I was like, put my back out. Please,

They wanted to keep me, like they wanted to wake me and see if it worked. And I was like, oh God, please stop. But they did and they're like, oh, you're doing well.

I'm like, can you please put me back to sleep. .

Jake: They don't like putting me to sleep, so if they can do conscious sedation, they're all for it.

Meagan: No,

Jake: that's why I can't I don't know about you guys, but I can't really seek out, but I guess it would be elective surgeries and other stuff.

But I, people won't touch me 'cause they won't put me to sleep. 'cause of my heart

Amy: really?

Jake: Yeah.

Meagan: Like for other things other than your heart.

Jake: Yeah. Like I have a deviated septum.

Meagan: No, same. So I,

Jake: they won't fix that because they don't wanna put me under.

Meagan: So when I was having those nosebleeds , and I have a deviated septum plus the scar tissue from the NG tube as a kid,

Jake: that's probably what it was.

That, you know what? Maybe that's what it is. Maybe I don't,

Meagan: I found out it's related. I'm like, oh, I didn't know that. Great. Good to know.

Jake: Yeah.

Meagan: I literally had to find an ENT that would work on me with anesthesiology. I had to put the team together.

I couldn't live life like that, so I had to do it.

Jake: No, I just get it like a little, I just hit if I'm like laying down, usually I'm listening to it. Yeah. It just like pops or clicks every time.

Meagan: Yeah, the finding someone to do other than heart stuff is really hard.

Jake: Even for this, and I'm, it's a good thing, but Brigham and Women's is connected to Boston Children's and that's where I've gotten all my care anyways,

but the surgeons at Brigham's, they're like, they're working with the pediatric heart surgeons at children. 'cause those pediatric surgeons, they have a better understanding and all that.

Amy: Question, you live in Philadelphia, right? But you still go to Boston.

Jake: I'm not from Philly.

I actually was born outside of Albany, New York. They didn't know I was sick ahead of time, within two weeks they knew something was wrong 'cause I was blue. But my mom's sister-in-law's father was a cardiologist at Boston Children's.

And , my parents talked to him and he was like, he needs to be here. They're not gonna be able to help him at Albany. They don't know enough, they don't have enough resource, So he got me down there as a wee little baby, and I was just there my whole life.

. But yeah, we'd just drive down from Albany. The morning would be three hours, maybe three and a half hours.

Amy: Oh, that's not bad.

Jake: That's not bad. I probably sucked for my dad.

Meagan: Yeah. And how far is it from where you live now?

Jake: I fly.

Meagan: Oh,

Jake: It is six hours or so. It's not a fun drive.

Amy: I feel like there's something to be said about that too.

When you start somewhere and you still have the ability to go there, even though it's a flight, which kind of stinks 'cause it's that it's just far enough away but not far enough to make you switch. I think that's honestly why I'm terrified to move. I do not wanna leave my cardiology team.

Jake: It's.

I've been really lucky, , even with primary care doctors and everything, they've all been on board with one another and in communication.

Meagan: That's good.

Jake: Even for this they told me, I made the appointment. I had two weeks before I left, I told my doctor at Children's that I, my electrophysiologist at Children's, she came over and just hung out with me and my parents for an hour just talking about stuff, not about heart stuff at all.

Just stuff

Meagan: that's nice.

Jake: Yeah, just hanging out on about vacations and football and stuff. My other doctor here, at Penn, we start every appointment and end it with a hug. Like we're really it's nice to have that my electrophysiologist is what I've kept at Children's.

And they would probably like for me to switch it over to Penn. And I do see Electrocardiologist at Penn now, just in case something happened. I have to be closer by than a flight if I were to get shocked or whatever.

Meagan: Yeah.

Amy: Yeah. Have you ever been shocked by your ICD?

Jake: No, I did ask if they could show me the video of them doing the ablations.

Amy: Oh,

Jake: . They described it as fire meets ice,

Meagan: no.

Amy: I won't lie. I do think it's very interesting. Not that I would know what's going on

Jake: Would it gross me out more than likely.

Yes. But through the vomit, I'd probably be able to muster up. But that's so freaking cool, man.

Amy: So I have to say, even for having the evaluation and all that ,

does it weigh on your mind a lot? Making the decision?

Jake: For me personally?

Amy: Yeah.

Jake: No. What's giving me a lot of anxiety about it is , whatever decision I make, how it affects other people. That's actually who I care about first.

Amy: Isn't that funny how we put everyone else before ourselves?

Jake: Yeah. Do people think that about you guys? Because I think that about me, but people certainly. Oh.

Meagan: Definitely.

Jake: It'd be hard to agree.

Meagan: I think I used to be that way. Putting others before me, before having a kid. And now I'm like, no.

I still care. It's not like I don't care.

Jake: No. I care about a lot of stuff, but

Meagan: yeah.

Jake: Oh, don't, no. I've also been setting more boundaries recently, like just, I actually don't feel like doing that.

Meagan: Yeah.

Jake: And I'm just gonna stay home.

Amy: The older I've gotten, I've set those boundaries big time.

Jake: Well, It's really easy because now I just said I have to recharge my social battery. Or my mental battery,

Meagan: that's a good one.

Amy: Although, I will say my husband and I, we are very social people. I had a. 30 minute meeting before this, and then I have this tonight and we're both like, it's Wednesday. Shouldn't we be going out? And I don't drink anymore.

But I still consider us barflies because we just like to sit and enjoy the atmosphere and hang out. And we've made some good friends sitting at a bar.

When it comes to boundaries, while I have them, it's still really hard for me not to want to go out and be social, but, yeah.

Yeah. But I don't, I have not had anything come up for me personally where I feel like I've had to think about everybody else. Before myself, because I haven't had a surgery in a long time. There has been nothing that's come up. So I don't know if I would be, okay now it's all about me, or how do I have to feel about what everyone else is feeling and thinking and what their thoughts and feelings are.

Do they want me to have the transplant then should I have the transplant? .

Do you feel pressure from family?

Jake: I don't think it's, and you do not have to answer that. No, I don't think it's pressure. I think it's my parents and I are really close like they to mean they go to all my stuff movement. So they're very much involved. But it's obviously up to me. It's been up to me for a while now.

Meagan: Yeah.

Jake: Even before not just 'cause I'm o over 18, but I'm saying like from early teens, like it's been up to me, but. I think there's some pressure. Certainly more than one person who I met with over the week identified that and asked me that question and after the fifth or sixth time I started to realize, oh yeah, maybe there was some outside pressure here.

Meagan: Yeah.

Jake: Yeah, there's definitely pressure. But they tell me, they say, it's up to you. We love you no matter what, respect your decision. And to that, I say, that's cool, but if it wasn't me, if it was someone else and I was in this position, I would probably think of them differently. Not on purpose, but it's just an an inherent human thing to think about it differently.

So I do think about that, but I don't think there's that much pressure '

Amy: yeah. And I'm sure as a I think my biggest thing, the older I get, I always think of my parents and how hard it had to have been for them, and the fact that for 18 years they were the one overseeing my care, and now it's me making the decision.

So I'm sure in the back of their mind they're like, what is she doing? What is she going to do? They still want that control piece potentially. Yeah. But yeah, I don't know. Just to, for them to have to give that up. I think those would be the two people that I would probably think most about now. God loved my husband, but it would be my mom and dad.

Meagan: Yeah,

Amy: for sure.

Jake: Yeah. Yeah. And my parents, they're in their sixties, they're very healthy. They both still work, travel, do all that stuff. I can't think about, I honestly can't think about. Them being my 24 7 caretakers and having them to restrict that part of their life for me at such an older age.

I would get it if I was a kid and this is all happening, honestly, it'd probably be a lot easier, but '

Meagan: They definitely look at that for that process, right?

Jake: Yeah. Oh, they definitely, that's one of the things I got talked to before I went and during by a couple people about how this is an audition and not walk in and just say no.

Because then they're gonna be like, okay, goodbye. Obviously fairly.

Meagan: Yeah.

Jake: I'll say my dad was worried that I would let that slip and I was like no. I understand why we're here. We made a decision together that I'd be here to get all the information possible.

Meagan: Yeah.

Jake: And that's really what this whole week was about.

More or less. I also learned about the desensitization they'd wanna do. So that's weighing heavily. . If they did list me, I'd be a four.

Meagan: Okay.

Jake: And , based on my height and my blood type,

so right now, if they did nothing, I would only match, give or take 10% of people. And then with the desensitization thing that they want to do, which would have to be a continuous, pretty much, they'd say they could get me anywhere from 40 to 60% match. But I don't know.

Do that one time. Maybe you can get me that high. But after months of doing it, I'm pretty sure the antibodies from that are probably gonna build up the whole thing is destroying antibodies. I don't know how you're gonna do it.

Amy: Yeah. Is that because of anatomy or because of blood type?

Jake: I have so many antibodies from so many past transfusions and stuff.

Amy: Oh

Jake: Like 96%.

Meagan: Oh wow.

Jake: So the good news is if anything foreign entered my body, it sounds like Get the crap beat out of it.

Meagan: Yeah.

Jake: It's not so good when you're getting a heart transplant. .

Meagan: If you did it, would you have to be there? Stay there. .

Jake: Yeah. I'd have to move to Boston. Which that part's fine.

Meagan: Yeah.

Jake: I would don't want to do it. The idea of moving is awful.

Amy: So are they still in New York or?

Jake: My dad is, but my mom lives 40 minutes away from me.

Amy: Okay.

Jake: Yeah. But they're both are flexible. Really lucky in that sense. If I had to do this, it wouldn't be, it would be difficult, but it wouldn't be impossible.

Meagan: Yeah.

Jake: That also sucks. I don't wanna not go to weddings and stuff that are coming up and travel myself.

Amy: I think that would be the hard thing, having to give all that up for an amount of time. I've heard other people, and this is gonna sound so stupid, but they're like, I can't eat sushi anymore.

And I'm like, sushi is one of my favorite foods. You're telling me I won't be able to have that? Like

Jake: they tell me that'd be easy.

Amy: I know that sounds so dumb, but

Jake: It's a real thing.

Amy: Yeah.

Jake: Yeah. It doesn't matter what it's.

Amy: I al it also goes back to the fact where I feel like even before this, giving up alcohol and changing lifestyle and just all the things we don't wanna do, but we do because we know we have to. And I don't know if I'm willing to do those things. And maybe I am, maybe if I was in that place, maybe I would be, , and I still wanna travel, but if I was that Ill, could I travel?

Probably not. Yeah.

Meagan: Fair.

Jake: Yeah,

Amy: there's just so many things on so many levels. I don't even know if I could comprehend it.

Jake: Yeah, no, it's a lot. But I've been thinking about it for a while. I have had all my affairs in order for the better part of 15 years.

But , I've had all that stuff taken care of. . I've had a let's just call it a celebration of life, shall we? . I've had a celebration of life playlist made for Yeah. Probably 10 to 15 years.

Amy: My sister is a huge advocate for having your death journey or journal, whatever you wanna say.

She's have the music written down. Have who you want to do your eulogy. Yeah. She's got hers in a binder.

Jake: I'm very open. I told them I was like, I know what I want with my ashes. I know everything. ,

Amy: And I think that's, I don't think that's crazy. I think in our situation need to think about that more.

But I think a lot of us are so afraid of death, we just don't do it.

Jake: Palliative care is really cool once you actually, you understand the distinction between that and like hospice,

Meagan: Yeah.

Amy: Very different. Which they talked about at SV one last year and

I enjoyed that conversation. Because I think we think about it as the same thing and it's not the same.

Jake: I think that team and the social work team were two of my favorite parts of the whole evaluation because I actually got to talk freely almost. And they actually understand what I'm saying?

I don't just sound like a weirdo for having my death planned.

Meagan: Oh yeah.

Jake: Yeah.

Amy: I don't think that's weird at all. Honestly. I think it's smart.

Jake: I don't think people think, oh, I don't know. Weird's probably the wrong term for, I just think it makes people uncomfortable to think about.

Amy: Yeah. Oh, for sure.

Jake: Not me.

Amy: I know I do with my family. We talk about death a lot. It's very interesting. But I'm not ready to not be here.

That were my destiny, might you say then It is what it is

Jake: now. Do I have a, do I have a personal cutoff age? Yes, I do. However, hey,

Meagan: can you please talk about that?

Because you told me that before.

Jake: ? Hang on. I was gonna say, however, the age keeps changing because I keep passing milestones ,

Meagan: didn't you say 40

Jake: Yeah.

Meagan: Okay.

Jake: No forties. The big 4-0. Yeah. We've had that date circled for.

Meagan: Why

Jake: it just sounds like a good number

Amy: to do what?

Jake: To stop.

Amy: What? I hit my forties and I was like, this is prime time people.

Jake: I'm sure I'll feel great when I'm 40

Meagan: change to 50

Amy: forties have been better. I can't,

Jake: I'm farther away from 40, so it's okay for me to think about still.

I still got eight years.

It's a long time.

Meagan: I remember you telling me that and I'm like, what?

Jake: Yeah. .

Amy: To each his own, but I would love to be 80 and in decent health, sipping coffee on my front porch, retired.

Jake: . This was easy. This was a very easy way of doing it. If you had come to me before and given me like a list of things, I probably would've been terrible.

Amy: Just a conversation.

Jake: Yeah. This is great.

Amy: Thank you.

Jake: Can I be a guest again?

Meagan: Sure. Of course.

Jake: I want recurring. , I want guests of the year,

Meagan: guest of the year.

Amy: What are we gonna talk about?

Jake: I, oh, I got, I'm a treasure of stories.

Amy: Oh my God.

Jake: Yeah.

Meagan: Okay

Amy: we'll hit you up for sure.

Thank you. Thank you, Jake. Have a good one.

Jake: You too. Bye

Meagan: bye.

Amy: He's ridiculous.

Meagan: I can't with him. I can't.

Amy: I do have fun talking to him. He's great.

Meagan: I do too.

Amy: Yeah. Asking him, if he felt pressure or anything with what was going on. Because I feel the way he talks about it, it's there, but he doesn't allow it to be there.

Meagan: Yeah. I would be a mess if I'm being honest. Yeah. I would feel pressure and then I would feel bad

Amy: Yeah.

Meagan: If I didn't do it.

Amy: . Or I made, I quote unquote, whatever wrong decision might be.

Meagan: Yes. But I think it's also different when you think about I have a son now and you're married and I'm married and a single person versus not, is a totally different thought process.

Amy: Yeah. It's a different ballgame.

Meagan: It's a whole different ballgame.

Amy: And I can totally see his point,

Meagan: yes.

Amy: Him saying his parents are in their sixties and they're approaching retirement and they wanna travel and he doesn't,

Meagan: that's his support system.

Amy: Yeah. Why I say this as a heart patient, I'm not talking, I'm not projecting the words on him.

For me, that's my parents' time to do their thing. Yeah. They should not have to take care of me.

Meagan: Yeah.

Amy: And I think those are the things when, those are the major things. I don't even know if it's so much. It is the surgery, don't get me wrong, that's a big piece of it. And you're trading one thing for another, but it's the support system.

It's everyone in your family that has to take a backseat. And then my thought is yet again. .

Meagan: Yeah.

Amy: And

Meagan: then also the new people like Bryan and Billy now have to figure it out. Whether it's financial, emotional, mental, .

Amy: Yeah.

Meagan: Especially if you're in the hospital.

Now it's funny because Billy and I were talking about this and I was like, oh, I have a work from home job. I could work from the hospital, but how sad , is that

Amy: to think about?

Meagan: Yes.

Amy: That

Meagan: I could still work even being on the transplant list.

Amy: Yeah. I won’t lie, those things have also gone through my mind.

Meagan: Yeah.

Amy: At, will your job set up? Working from home is different than mine.

Meagan: Yeah.

Amy: But with where I work, is that something they would allow me to do?

Meagan: Yeah.

Amy: I'm sure they would have to get clearance from HR because it's a whole thing and whatever. Yeah. But at the same time, it's, do you either want me to work or do you want me to sit in the hospital and do nothing?

But I'm fully capable of working. My brain's still available. Oh, I would rather do something. Yeah. I don't know. So there's been a few others that I've had conversations with for transplant on my previous podcasts. One of the things that they said that they were told is to walk, constantly walk.

And they said they walked the halls all day. And I'm like, I would want to shoot my feet off. It would get so boring. And they had it down to how many laps Exactly. Was one mile. And they would walk. And I was like, oh my gosh. I can't imagine being that status where you would have to be there.

Meagan: Yeah,

Amy: I don't know what I would do.

Meagan: I'd be bored outta my mind.

Amy: Hence the reason, which is probably why at this point they're like, let's get the evaluations done early so that way you don't get to that status and you can have it before you're downhill.

Meagan: Yeah. I don't even wanna think about it.

Amy: I don't either, but it's also very interesting to me, asking him, is transplant conversations prompted by the arrhythmias?

This is the second person we've talked to.

Meagan: Yeah.

Amy: Who's had a transplant evaluation? One. . The last one we did . very clearly. .. Arrhythmia issues.

Meagan: Yeah.

Amy: And for him, it almost seems like it's the same. There might be more to it, obviously.

Meagan: Yes. Yeah.

Amy: But that's the concess con. God, I can't talk consensus.

Yeah. That I have, I was hearing,

Meagan: it's interesting. And I wonder if the more people we have on who are going through the process or have had a transplant will say the same thing.

Amy: Yeah. Because I would assume the arrhythmias are causing the heart failure.

Meagan: Yeah.

Amy: I don't know. I'm not a doctor, but that would be my assumption.

Meagan: Yeah. Interesting.

Amy: Yeah, for sure.

Meagan: That was good.

Amy: Yeah. I enjoyed it.

Meagan: He said, he texted me.

Amy: Oh, he did?

Meagan: He said, honestly, that was fun.

Thank you so much for joining us and keep sharing your story and supporting one another,

Amy: and be sure to tune in to our next episode.