HemoLife Podcast

Firefighter With Hemophilia Ft. Colby Spencer

• L.A. Aguayo • Season 3 • Episode 8

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We sit down with Colby Spencer, a young firefighter and EMT living with severe hemophilia B, to talk about what it takes to do a high-demand job without letting the disorder write the rules. We get real about compliance, mindset, mentorship, and why building a life matters as much as managing bleeds. 

• deciding to pursue fire service after being told “no” 
• being upfront about hemophilia at work and finding real support 
• target joints, non-compliance lessons and keeping factor on shift 
• learning to love EMS and pushing for advanced skills 
• handling self-criticism after tough calls and tracking achievements 
• dealing with people who misunderstand hemophilia in health care 
• isolation in a small area and why community events matter 
• self-infusion anxiety and the value of true mentorship 
• purpose, providing for family and breaking the “safe job only” belief 
• mental health, addiction and what PTSD awareness looks like on a crew 
• training for fitness and a marathon while staying on prophylaxis 
• fatherhood, genetics concerns and teaching a partner to infuse 

Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers. 


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Welcome To HemoLife

SPEAKER_00

Welcome to the HemoLight Podcast, your gateway to transformation and empowerment. Hosted by Eliot Weil, we're diving deep into the world of rare disorders, unlocking the full spectrum of your potential. Each episode, join us as we connect with pioneers, wellness experts, and to survivors. They're here to share powerful stories and invaluable insights from mental resilience to physical health. Community news to life-altering strategies. At HEMOLife, we provide the tools you need to excel and inspire. Prepare to elevate your life, learn, laugh, and grow with us. Let's embark on this journey together.

SPEAKER_02

What's going on, everyone, and welcome back to the Hemo Life Podcast. I'm your host, LA Guayo, and I'm here with my co-host, Dr. Joe Milleschi. Today's episode is one of those conversations that can truly shift what you believe is possible. We're joined by Colby Spencer, all the way from Alton, Maine. Colby is living with severe hemophilia B, and he's also a firefighter in EMT. Let that sink in for a second. Growing up in this community, we're often told what we couldn't do. Certain careers felt completely off limits. And for many of us, something like firefighting wasn't even a thought. It was just assumed to be impossible. But Colby represents a different mindset, a different standard, a new level of belief. He was born January 2002, and at a young age, he has already stepped into a role that demands physical strength, mental toughness, and responsibility for other people's lives. So this episode is more than just his story. It's about expanding the vision for what's possible, not just for the younger generation, but for anyone who has ever felt limited by this condition. Colby, welcome to the show, man. We're glad to have you.

SPEAKER_01

Thank you. It's an honor to be on.

Choosing The Fire Service Anyway

SPEAKER_02

All right, brother. So take us back, Colby, to the beginning. At what point did you decide becoming a firefighter and ENP was something that you were actually going to pursue despite having a hemophilia B? What did people around you say and give us a little bit of insight there?

SPEAKER_01

So I'm sure I have a little bit of a similar start to the to everybody else in the community in the sense that we're told that we can't do any physical, strenuous sports or activities. And I'm not I have ADHD. I'd like to, I'd like to add that I have ADHD and I can't sit still. I can't do the same thing every single day. I lose interest really quick. And when I got to my junior year of high school, I was told about the idea of being a junior firefighter. And that's something that, you know, my my parents were kind of like, I don't think you should do that. You gotta you gotta do better with your hemophilia treatments and make sure that you go X amount of time without a bleed. And I didn't listen. I immediately went and applied. I got my license and I drove down to the local fire station. I had applied to be a junior firefighter. And at first, those trainings that they you that you go to as a junior are pretty lax. They don't let you go on calls, they don't let you do the fun trainings, and I got to sit and watch them do that stuff, and I was like, this seems cool. And uh I turned 18. I got on my the fire department as a full-time member, as a volunteer, and I did that for a few years, and in the middle of it, I applied to the place that I currently work at. I've been working career fire EMS for about five years now.

Disclosing Hemophilia And Staying Compliant

SPEAKER_02

Yeah. So were you pretty open up front with everyone? Like, hey guys, I have hemophilia, these are some of the obstacles that I might go through. And I guess were they just kind of welcoming to that? Because I know from my personal experience, I think I told you a little bit, like I try, I'm not sure if I did or not, but I wanted to go into the police academy, you know, because I always wanted to give back somewhere or another, and I got denied from going into that. So, did you have any setbacks with trying to get in?

SPEAKER_01

So I I I thought I would. Um, my boss, which he's he's an amazing human being, uh Chief McNally, in my first interview with him, he was asking me about myself. I was like, Oh, I I have I have this blood disorder. And he immediately was like, Oh, what is it, hemophilia? Do you have A or B? And I was like, Oh my gosh, you know what hemophilia is. Like, that is that's incredible. Like, not many people outside of the bleeding disorders community actually knows it and yeah, has any idea. And I was kind of like, Hey, is this gonna be a problem for you? And he's like, You able to maintain it? Yes, sir. And that that was it. I mean, he very graciously accepted me, and I've been working for him uh since September of 2021. Yeah, and he's he'll message me every now and then and he'll be like, Do you do your factor?

SPEAKER_02

Yeah. So I mean, it's I mean, it must be super important for you to be compliant to your regimen. You know, looking back now, where I am currently physically and with my physical state, I don't think that even if they would have let me into a career path like that, I don't think that I personally would have been able to sustain that just because of my lack of compliance and at the early stages of my life, it just kind of damaged my joints too much. So, where do you kind of stand? I mean, do you have uh target joints, damaged joints? I'm just kind of curious on like how you are able to show up physically and mentally at your best for a job like this.

Learning To Love EMS Work

SPEAKER_01

So I'll be completely honest. I mean, for the for the first couple years of me working there, I was severely non-compliant. And I I have my left ankle, my right ankle, my left hip, and my right shoulder are all target joints. And it it takes a lot of mental toughness to just troop through it. I keep factor at work, and I I try to do my factor every shift. I I work every four days, so I do 24-hour shifts, and occasionally I'll get held over for a 48-hour shift, and I try to do it on shift that way I don't have to worry about it at home or any of that stuff.

SPEAKER_04

Yeah, let me ask you this. And I think I've asked you this when we were at coalition, what like made you think like, wow, I wanna I wanna help people, I want to do you know, an EMT, I want to do firefight, like what just tell the viewers like what sparked that?

SPEAKER_01

So like I like I said, from the junior fire when I was on a fire department as a junior to becoming a volunteer, I was super intrigued with firefighting. I had zero interest in EMS or medicine. Yeah, and when I got when I got hired up at the it was it was at the time Howland Fire Department. We've since re redone our name in our coverage area. We are now the Central Maine Highlands Fire and EMS district. I was told when I got hired, hey, you need to have your EMT basic license within a year of hire, or you're you're not gonna work here. And uh I I was kind of like, well, that's a bummer. I really didn't want to do medicine. And from there, I I got my basic license, started using it a little bit, and I was like, this is this is really fun. Like, yeah, I was not a good student in high school, I was not the greatest student during that basic EMT class. The guy that actually taught my class works with me now, and I've I've probably driven him crazy, apologizing. Hey man, I really sucked in your class. And now you're gonna be your paramedics license.

SPEAKER_04

You're gonna get your paramedics license soon, right?

SPEAKER_01

I I so I got my advanced EMT license last October. Okay, which which has actually made me fall deeper in love with emergency medicine than I was previously. Yeah. It's just super interesting to, you know, I mean, my skills went from I was able to administer eight different drugs. Sorry, my dog is kind of attacking me. Merle, come out, buddy. That's okay. So I was able to give eight different drugs, and it was really it really triggered me because there wasn't a ton I could do. It was show up on scene, get a history of the patient, talk to the patient, get them into the ambulance, and if I see anything that I might think needs somebody else, I have to call for a paramedic. Yeah. And that that irritated me quite a bit because I I always I'm I'm very independent. I don't like to ask for help. So having to do that and ask for help and all that, it it annoyed me. So I went to advanced EMT school three years before I had to, and I'm now able to do IVs, I'm able to give some better pain management. It's just been overall, it's been a fabulous experience.

SPEAKER_02

Yeah. I think uh that's a hemophilia, a hemophiliacs problem is we're so self-reliant, you know, we don't we don't want to ask for help, we want to do everything on our own.

SPEAKER_01

Yeah, absolutely.

Self-Critique And Building Confidence

SPEAKER_04

I think for me to take it another step with what you just described, for me, like wanting to know more about medicine and helping people is my passion because I remember when I was five, six, ten years old, I was in and out of the hospital all the time. And I was like, man, what I want to do is this, I want to be able to connect with that patient. And I'll be like, hey, I've walked in your shoes. I know what it's like to have a bleed. I also know what it's like just to have a bump or a scrape, or you know, not maybe not hemophilia related, just going to the hospital. You know, I I feel like I was living at the hospital as a young child, uh, and that just kind of sparked in me that like I want to do it better and I want to be able to have that connection. And so I think it's awesome that like you went in for like, hey, I want to do firefighting, but now you are developing this love of I I want to help too. And I want to be able to be able to be able to administer these life-saving medications. Is there was was there has there ever been uh a time where you're like, wow, like I saved that guy's life?

SPEAKER_01

Like I wish I could say yes to that one. Um, I am you know the you know, the saying that we're all our own worst critics. I could do everything right, but I could do the smallest thing that wasn't the right way, like whether that be putting the nasal cannula on a patient the wrong way, and I will just I will beat on myself for that sure for weeks. There there's still a few calls that happened months and even years ago that I still I still take chip shots at myself on, like holy smokes. Uh and I I think that's part of my drive to want to be better.

SPEAKER_02

Yeah, that's a better provider. It says a lot about you, actually. I mean, it shows that you have a growth mindset and that you're constantly auditing yourself and figuring out, you know, what areas can I grow in. I think that's I love that. I'm the same way. I just started my own apparel brand, and I mean I will nitpick everything and and I will beat myself up over little things that maybe a lot of people would never even notice. Um, but I actually think it's a I think that's a gift though. I don't think that's a bad thing. I think that tells a lot about you and a good way.

SPEAKER_01

Yeah, there's uh there's been a couple times in like after action reviews, we do an after action review after every bad call, every big call. And the last two of them that I was a part of, I I ran. And I I started in and I'd I'd just be like, everybody sucks. I did nothing right. And then one of the chief officers or paramedics will be like, Well, actually, that was that was pretty good right there. And I'll be like, I don't recall that. Like, yeah, all I can all I can see is the bad that I did, and there's it's just an opportunity to look back at and say, I can do this way better next time.

SPEAKER_02

Yeah. I mean, knowing that though, that you have that tendency, I think that it is a good practice to start that I I could even implement is to start praising yourself more frequently. I know one drill, like when I was um kind of re-establishing myself, trying to build myself up mentally, trying to get, you know, break through some of my limiting beliefs that I grew up with, a practice that I would do that I learned from someone else was to like every month take some time out of your day and like write down your achievements. And so now in my notes on my phone, every month I actually have an alarm. It'll go off and it'll say, read, read through your achievements, you know, and so I'll I'll go ahead and and I'll do that and just reminds you of once you once you do it for such a long time, you look back and you're like, okay, maybe during maybe you weren't feeling good about yourself for a little bit, and then you're like, I've done a lot, I've overcame a lot, I've accomplished a lot. Like, I think we need to praise ourselves a little bit more.

SPEAKER_03

I yeah.

Finding Belonging In The Community

SPEAKER_02

Man, I gotta tell you guys a story though, because you made me think of it um about how a lot of people don't really understand hemophilia. I went to the doctor last week and I was having like ear problems. I think there was something stuck in my ear. And they went in there, I told them I had uh severe hemophilia, and they acted like they knew what it was. They were like, Oh, yeah, yeah, okay, cool. Yeah, we get that. What type what type do you have? And I and I told them, and then they're like, Well, how long have you had it for? And I'm like, I I got diagnosed last week, actually. So that was my first red flag, right? And I'm like, okay, okay, cool, cool. So, anyways, then they stick they stick this little gun in my ear and they start shooting water, like spraying the water in my ear. And it was just like I could feel it pounding against my eardrum. And it actually felt okay. I was like, okay, that's cool. Well, I go home and man, my neck starts swelling up. My I feel like lymph nodes popping out. I I don't think I've been in that much excruciating pain in a very, very long time. And so I started to think, I was like, can you get a bleed in your eardrum? Like in your eardrum? Like, I don't know. So the next day I go back, see the same you know, doctor that was there. Said, hey, I think I might have a bleed in my eardrum. He it was a girl. She's like, let me let me let me check real quick. She goes in there and starts looking. I don't see any blood. I said, you know what? I think I'm gonna leave. I'm gonna I'm gonna head out real quick and I'm just gonna go infused, okay? Because you aren't gonna be able to do shit for me. I don't see any blood. I don't see no blood. I said, I'm I'm done, bro. I'm checking out. I'm out.

SPEAKER_04

You know, Colby, that uh we we spoke when we were in Vegas at Coalition. You cover like a huge area in Maine, and so it's gonna be hours away. You know, have you ever encountered another patient? Like uh, we're treating a hemophiac. Like, have you ever treated another hemophiliac or dealt with somebody that was dealing with bleeding disorder issues or bleeding in general?

SPEAKER_01

You know, honestly, that's if there is any people with bleeding disorders in the because we we cover 550 square miles.

SPEAKER_03

Yeah.

SPEAKER_01

We're we're pretty much smacked up in the middle of Penobscot County and we cover out to a different county, which is Hancock County, uh sort of coastal esque. I don't I don't actually know of any other people with bleeding disorders, and as awful as it sounds, is uh I'm actually really hoping to eventually get to treat one. Yeah. Just just because I I know I have the knowledge of bleeding disorders, having you know lived my entire life with one. Yeah. But I I haven't encountered another person with a bleeding disorder yet, which which is great, but also kind of yeah, bob.

SPEAKER_02

Do you go to like a local chapter? Do you guys have a local chapter that you attend events and stuff?

SPEAKER_01

So I I do. We have the New England Hemophilia Association, and it's it's all of New England. We used to have our own state chapter called Ham Hemophilia Alliance of Maine. We uh we combined with Niha, and I've uh I kind of go back and forth between attending a bunch of events for them and for the coalition. Both are wonderful communities. I I have nothing but good to say about either one, but I I know where a lot of the local bleeders are in my community, and what's surprising is a lot of them are yeah, that's interesting.

SPEAKER_02

There's not too many. I don't yeah, you're the first like new B that I've met in a while.

SPEAKER_01

No kidding.

SPEAKER_02

Yeah, I don't really see too many B's. Yeah, I'm an A. So uh how severe A. How important is it to you, Colby, to to stay involved in the community and to give back in some way?

SPEAKER_01

So I I I think it's super important for me to you know stay involved in the community. It's a small community, there's not many of us. Uh and it it it makes me a little bit sad. I'll go to these events and then it I still ride the high of going to these events and going, I just saw my my friends from Gen 9 and all over the place, and they're just like me. And then I come home, it takes about a week to set in to be like, yeah, I'm the only bleeder in my area, and not really many people know about it. Like it's there's just something super, super, it just feels really good to be around people like me, you know.

SPEAKER_04

Yeah, I mean that's why we have the podcast, and I'm so happy you're on. And what I'm hoping is is maybe there's other bleeders in your area, like you said, with the chapter that we could connect with. Like we want to come up and do maybe do an event up in Maine and be able to, you know, connect with bleeders. And you know, I don't know. I think really getting people together is where it's at, the community. I know that we have educational events, there's chapter meetings, there's this and that, but I think really where the the beauty comes out is where when you we all get in a room, we all sit down, we all talk about life experiences, we all just really just have fun together. And there's so there's so much value in just that. Um, and so it's nice to see other bleeders out there and you, you know, someone like you, like just meeting you, and I don't know anybody that's a firefighter. I don't know anybody. So I think it's just interesting to see different where people's lives have taken them and what they're comfortable with, and also building that sense of brotherhood and that that sense of community. I I just I'm really excited about what LA and I are bringing to social media because that's where everyone connects. I mean, everybody's on their phones, so um, it's nice that people throughout the country can see that yeah, there is people, even in Maine, that don't let hemophilia define them for sure. Yeah.

Self-Infusion Anxiety And Real Mentorship

SPEAKER_02

So absolutely. I've got a question. We all know there's a bunch of educational events and conferences and showing up and being around others like ourselves is is an amazing feeling. You know, like you said, it makes you feel rejuvenated when you when you come back. But growing up, based on your life experiences, your struggles, your setbacks, anything that you've endured, when you look back, can you think of any resources that you wish would have been available to you during that time? Anything that would have helped out your journey.

SPEAKER_01

I think so, yeah. I mean, when I was younger, we used to go to New England Hemophilia Associations, family camp. We stopped going for a number of years, and it I think it took me six or seven years to actually learn to self-infuse myself. I didn't start self-infusing until I was 12.

SPEAKER_03

Okay.

SPEAKER_01

And everybody around me was doing it, and I used to go to the local hospital to get my factor, and it wasn't a I I guess it wasn't a issue of not having the resources around. It was just me not understanding that there was those resources around me to learn to do that. And it took a it took one event, the first event that we had been to in, like I said, seven, six, seven years for me to be sat down with uh a nurse that I've known my entire life, Mr. Glen Roy. He sat me down and made me self-infused, shooed shooed my parents away, severe anxiety, young Colby, severe anxiety, and he was like, All right, Mr. and Mrs. Spencer, you need to get away, and he's gonna sit here until he puts the needle in his arm and infuses himself. But other than that, I mean the the resources were there.

SPEAKER_02

I just yeah, as a young trying to young kid, I'm trying to think, you know, I'm just opening up dialogue. I'm trying to think about what else we can do, you know. I mean, we um I've heard a lot about mentorship, you know, opportunities to help people. And one thing that I think about, and like while I was at, you know, like hope for hemophilia, you know, their I guess their tagline is like helping people out in a time of crisis. And with my experience working in the community, we're seeing a lot of individuals going through these times of crisis, whether it's you know, they're depressed, financial stuff, you know, they can't find work, you know, there's a lot of different reasons why they're in these times of crisis. But what I guess my train of thought is why aren't there resources or programs that are proactive so we're not getting to the time of crisis, if that makes sense. You know what I'm saying? Like, where where do we fill that gap? How do we fill that gap so that we don't even have to get to that point?

SPEAKER_04

Yeah, but I will say this real quick, sorry to interject. But I what LA just said, what you just said, like I think it goes back to that sense of community. Like you have it, like severe anxiety. I know that growing up, living with a bleeding disorder, you can be anxious about things. I think maybe if at an earlier age that you're around more of hemophiliacs, you're you know, and maybe how do I want to say this? Like, I think if there was a bunch of friends that I Had versus being at a formal setting, just friends. Like say I knew LA Colby. I knew all my friends that I currently have earlier on. I think I would have been a little bit more comfortable with self-infusing, maybe more comfortable with X, Y, and Z. I feel like I feel like growing up, we're like siloed into these little like, well, you have hemophilia, you're gonna go to camp, you're gonna do this, you're gonna do that, and you're just like, all right, versus just like, hey, I'm gonna call Colby and you know, I'm gonna talk to him about what he's doing, you know, and just have more of a natural like relationship versus more of like, nope, you're gonna go to camp and you're gonna learn infused.

SPEAKER_02

You know, and I feel like it comes back down to the whole mentorship then and actually having something truly set in place where you have someone, not just a random person, a true leader, a true man who's gone through it, understands it, and can provide wisdom to you in the right way. So I mean, I I think somehow we we we kind of started that last year with the the fitness mentorship program that we offered in Texas. And I know we're and like Joe alluded to, uh, we're wanting to go to more locations and do mentorship events, not just fitness, but yeah, other areas of life too.

SPEAKER_01

Yeah, the the the best event I I no offense to any of the other events, I think the the best events that I've ever been to were LA. Do you ever hear of Gen 9? Huh? Yeah, that that was the mentorship program for me, it was probably the best event. Get around a bunch of guys and gals that are right around my age, yeah, who have been through the same exact scenarios that I have been, in the sense that you know, learning to how to self-infuse. And then one of the things that I really enjoyed about that event was how uplifting it was to be around other people. And I've met some of my best friends ever at those events. That's awesome. And every time I had gone, it was something new. Let's challenge ourselves this time.

SPEAKER_02

Yeah, I love that. Uh it was there was that it was that put on by Gut Monkey. It was, yeah. And that's just for hemophilia bee patients, though, correct? Just for bee patients. And so big shout out to Pat and Joe Torrey.

Purpose, Work, And Providing For Family

SPEAKER_01

They're yeah, I've heard about them and their events, incredible human beings, and giving young bleeders the tools that they need to succeed in challenging themselves. Like we me and one of my really good friends, John Jewell, we we went on the high ropes course at Camp Collins, YMCA Camp Collins in Gresham, Oregon, and we did our factor on the high ropes course.

SPEAKER_02

That's crazy. That's cool, man.

SPEAKER_01

So I was I just love the idea of going to these places and being around people like me, like I said. Yeah, get out of your under yeah, get out of your comfort zone and challenge yourself.

SPEAKER_04

You know, I think I think one of the things that LA I was just um thinking about early on is we at these events we would have pro golfers that had hemophilia. There was uh I think there was a baseball player that had it too. But I think what would be nice is imagine if you had 10 hemophiliacs that one's a firefighter, one's a doctor, one's an entrepreneur, one's a dentist, one's um, you know, a plumber, one's and basically you could have these 10 hemophiliacs, this core group of guys that go out and talk to bigger groups, because then if you if if you were in the crowd or even it, we could even have a podcast that you could be like, no, like look, hey, you want to be a firefighter, let's talk to Kobe. You want to be an entrepreneur, talk to uh LA. You want to be a doctor, talk to Dr. Joe. And I feel like that's what I needed is like I I feel like LA circling back, we talk a lot of hemophilites, believe it or not, are having financial issues because they haven't connected with a job and they're scared, they have anxiety. I'm gonna give you an example. Uh, I have a cousin and I have a brother, and they're right at that college age, they don't know what to do, they're nervous, and to be honest with you, with no guidance, they're just gonna flounder out there in LA.

SPEAKER_02

So true, man. So true.

SPEAKER_04

Yeah, what's that? How many buddies do we know that are having that same issue and they're in and out of game?

SPEAKER_02

This past week, I it hurt it hurts because I I want to do more. And these guys are reaching out and they're saying, I'm lonely, I'm scared, I don't know what to do. I and it's just like, man, like you know, that's why it's awesome to have leaders on here, guys that have pushed through like Colby and you know, and like like us. What you just explained, like a setup like that, yes, would have been so beneficial for me in my life. Um, I can't tell you how many years I spent, I'm depressed, crying, you know, at an early age I had kids, and I was so scared, being like, How am I gonna provide? I can't even get out of bed today. I my angles are messed up. Like and I I did everything, guys. I I I went to land I started working landscaping. I lasted one week. I worked for a moving company, I lasted two days. I did construction and no, I I tried everything. And you know, I missed so much school because of my bleeds growing up that I wasn't really that educated. You know, I didn't, I wasn't, I wasn't on no fast track to go to college and get a degree and to use my brain. So now I'm stuck in a position. Well, I can't use my brain and I can't use my body. Who am I? What do I offer? What's my purpose? How do I belong? How do I give back? Like and I was I dug I dug myself in a huge hole that I had to overcome. Um happy to say I've I've found purpose, I found how I belong, I found how I give back, and and now that's through you know leadership as well, and and doing stuff like this.

SPEAKER_04

I think it's almost our duty just to be on here. I know this started by talking about firefighting and whatnot. Yeah. But I think what you've done is you really have inspired me at least, is to really understand like, hey, there's gonna be hemophiliacs out there that have brett broken through, but there is a lot of them that are still behind. And as leaders, we need to take our brothers and bring them to the forefront and be like, no, like you're not gonna live in depression. Look what you're doing. You work 48-hour shifts, you're you're fighting fires, you're expanding your knowledge with you know your EMT. Like it's no, it's not over.

SPEAKER_03

Yeah.

SPEAKER_04

You have severe B, you're prophylactic infusing, and you have a child on the way. And so no, you are so as us three successful individuals here, we need to make sure we bring the other guys with us.

SPEAKER_02

I get a ton of messages, I get a ton of messages from others, and guys, we have a whole new generation, one-year-olds, two-year-olds, brand new babies being born every day. And these mothers, what do you think they're doing? They're going on social media, they're they're they're researching hemophilia. They want to understand what is my child's life gonna look like? Is it hopeless? Is it can they do these? Can they? I mean, who knows what's online when you're just searching it nowadays. I know, you know, whenever I was con I had hepatitis C and I was going through that treatment, I started researching stuff online, and it was all like once you get a liver transplant, you you probably got about six months to live, and you know, you just start going down these crazy rabbit holes. So they need to see true lives and leaders, you know, doing what they're doing. So, yeah, an event like that, Dr. Joe, can you imagine, like you said, Colby, all of us up there? Oh, and then all of a sudden Colby's telling a story and it sparks an interest in one kid's life, it creates a belief system in his head. Hey, I can do that. You know, that's the kind of stuff we need to do. So this is just open dialogue. Just you know, I'm getting excited because I I do feel a big responsibility to the next generation that we that we do something with, you know, the platform we have.

SPEAKER_01

I I think one of the one of the biggest things in in bleeding disorders community that is still very prevalent is we can't do anything physically strenuous. And I think I think what you were kind of going back to what you were saying, your your brother and your cousin going to college, not really quite sure. I I feel like that I feel like a lot of bleeders have that idea, like, oh, I gotta go to college, get a job that I'm not gonna get hurt at. And it doesn't have to be like that. I I mean I'm finding higher limits to what I can and cannot do. I worked construction as soon as I got out of high school before I got this before I got the job that I have now. I worked for a company laying foundations, and I I tore my Achilles tendon on the job site. And and I I ended up going back to work a few weeks later with a boot on and still continue to do it. I was just infusing every single day.

SPEAKER_04

I mean, right there, that's resilience. I don't know, like for me, I I know for LA, we're all I'm I'm writing notes down actually. We're told no through our whole life. No, no, no, no, no, no, no. And it's like, well, well, wait a minute. I'm an adult. I gotta say yes. Because yeah, I'm in control of my life. You have a child on the way. Me in LA, we have four children. We have to provide for our families. I mean, my dad always said, Hey, you're gonna you're gonna have a job and you're gonna support your family. And I think that resonates with being a male and being like, hey, I'm gonna be the you know, the guy that's gonna take care of my family. No, I'm not gonna be laying around being a slouch, be the provider. So I think really, um, you know, the fact that you teotorian Achilles tenant was uh had a boot, I'm ready to go.

SPEAKER_02

I mean, that's how kind of like I used to have to I used to have to tell myself, yeah, like I had to tell myself there is no handicap card in life. It doesn't matter. No one is going to feel sorry for you, no one cares. I had to tell my like no one cares, dude. No one cares you have hemophilia. You're not gonna get special anything. So just drop that mindset. You just you have to finally just take full accountability for your life. But that being said, a lot of people don't have have that mindset or capability, and that's where I think mentorship leadership comes in. And real quick, one thing that I thought about, I want to say it because I I don't want to forget it. Um, about the guys who are our age who are struggling, Dr. Joe and Colby, like what do you if there was like a scholarship or program for these guys who are saying, I'm depressed, I don't know what to do, I'm scared, I don't know how to provide. What if there is like a scholarship opportunity out there that would provide vocational training of some sort to say, you know what? This is your second, this is your second chance. And we're gonna provide you some scholarship funds and we're gonna get you training on something that you can do and give these guys a rebirth of life, a rebirth of hope that they can get back on track because it's not fair. It really isn't fair what we go through. It's not. You do have to change your mindset on how you you work through it, but it's really not okay. So I do believe that they are worthy of an opportunity like that, you know, to have that second chance at doing something.

SPEAKER_01

Yeah, absolutely. I I think that that's an incredible idea. I knew right from the beginning I didn't want to go back to school after I graduated high school. I I knew that instantaneously, and I kind of waived the options and decided that firefighting was the job for me. And then I obviously got forced into going back to school. But I I think it's extremely important to for the community to know that these opportunities do exist and that everybody nobody needs to be chained down by the idea that because I have a bleeding disorder, I have to do something calm, cautious, and I have to sit in an office chair all day. Like I I think that is extremely important, and I think that would help out with a lot of mental health issues in the community. Yeah, and I and honestly, it kind of is kind of combined with the mental health side of things in the community. I feel like one of the things that isn't talked about enough in the bleeding disorders community is addiction. Oh yeah, yeah.

SPEAKER_04

I see that a lot.

SPEAKER_01

Yeah, I think that that having these opportunities would also help out with the addiction side of that as well.

SPEAKER_02

I was gonna say, do you see what Joe Rogan and and Trump signed the other day?

SPEAKER_01

With the psychedelics for the military vets. Yep.

SPEAKER_02

I still have a 90% curate or something like that of like addictions and stuff. That's crazy. I haven't heard of it. I had a research.

Mental Health, Addiction, And PTSD Awareness

SPEAKER_01

I have I have I've had several coworkers who had deployed to Iraq, I get Afghanistan. I love them very dearly. They struggled extensively with PTSD. Like, oh yeah. There were there would be a couple times on shift. You could tell we were getting close to the to the date of the event that happened to give this man PTSD. Yeah, I just want you to know. Yeah, he's probably six foot five, 250 pounds. This guy's this guy's a monster. And I feel like had I not been a little bit more educated, I'd I'd have been like, this guy's this guy's got no mental health issues. He's a he's a beast, and he he would just start acting weird during like when we were approaching those dates. Yeah, and then he would take vacation or call out sick on that day because it it hit him so hard. So I think the I'm I'm very happy that our veterans are getting more. Yeah, yeah, yeah.

SPEAKER_04

I mean, uh, let me circle back around real quick. When you made, like, hey, that decision, I want to be a firefighter, and then actually applying and then having that thought, like, are they gonna kick me out or not let me join? Was there any like you said you were anxious as a young kid? Like, were you like, oh man, or did you not care? You're like, you know what? I don't care. I'm going, I'm doing it. Like, what was your mentality there?

No Plan B And Hiring Persistence

SPEAKER_01

I I wasn't going to give up. I I had actually applied to four or five different places at once. I went through the hiring process of one, didn't get the job. I I finished pretty high in their their hiring score, and the other ones I I just wasn't super interested in. One of them I had like an hour and a half drive to get to work every day and go on one of the busiest tourist routes in the state. And I was just like, nope, not gonna do that. And I didn't, I I tell everybody all the time and makes them laugh. Like, I've I've lived in Alton, Maine, pretty much my entire life, and 25 mile, uh 25 minutes north is this town called Howland, which is where I work. I had no idea it existed. I applied because I had a good friend that was like, Hey, you should apply here, they'll hire you, I'm sure. And I did. And I got up there and I was like, This place is weird. Yeah. The fire station at the time was this small little uh garage, if you will, and all the trucks were double stacked, so you'd have a fire truck and then another fire truck behind it, two ambulances stacked on each other, a tanker and another truck, like tiniest station ever. And one of the things that I don't I don't know if my boss thought I was gonna just go somewhere else. I was like I said, I've been applying, and he was like, We're building a new station now, be ready next May. Nice. And the history there is it's it's concrete now. I've I've been with him for five years. Nice.

SPEAKER_04

So you never had a hesitation, like I'm not good enough, or this bleeding disorder is going to, you know, or just like, no, I'm going all in. I don't care if I have to apply to 10 of them. I'm giving a job and fire, I'm gonna be a firefighter.

SPEAKER_01

That's essentially how it was with the uh thought in the back of my head, I didn't pay enough attention in school to do anything else. Gotcha. I know I've been I've stuck with this since I was a junior in high school. It's something that I like, it's something that intrigues me. I like seeing things, I like learning things in this field specifically. Yeah, so I like that.

SPEAKER_02

You gotta give yourself no plan B. Just hey, yeah, plan A, that's it.

SPEAKER_04

We're going all in. And I feel like I feel like hemophilics need to have that mentality, like uh, like Kobe is like, hey, I'm good, I'm doing it. I'm not gonna let that back in my head like I have hemophilia. What if they don't like me? What if I twist my ankle on the job? What if I because I feel like a lot of hemophilics get lost and they need to have your mentality, Colby is like, no, I'm doing it. Like, you know what?

Fitness On Shift And Marathon Training

SPEAKER_02

I think growing up, growing up, I used to go to these events where um they would, you know, these little kids would talk about what they wanted to be when they grew up, and they would all, you know, they would say baseball player or this or that. And the advice that they would always get in return, every time, I promise you, was the adult or whoever was speaking back to them would say something around the lines of, um, well, yeah, that's amazing, but have you ever thought about like, you know, maybe you could keep score on the sideline, or maybe you can, you know, get them some water bottles, you know, like it would it was it was always throwing that thought into their head, like, hey, that's cool and all, that's sweet, but have you ever considered what else you can do in that realm? Bro, come on. Hey, yeah, we can everyone knows you can have a plan B, but that's not the mindset. That's not the mindset you need to go into anything. So no, you need to reach for the stars. No, I don't I don't buy into that. Oh, let's create a plan B. No, we of course we can do that later, but that's not the train of thought right now. But I was curious, or go ahead. Go ahead. No, go ahead. No, no, I was just curious about your you know, how important is it to you to be physically fit? Do you have a regimen of any kind um when it comes to working out, eating healthy? I know that plays a big role in in your mental state and your capabilities.

SPEAKER_01

So yeah, uh we we work out together every shift. We we don't have the greatest weight setup. We we had we just got a treadmill. We're still a work in progress. We're a very young department, and we're we're getting more equipment as we go on. And then I like to I'm I'm I'm a bit of a wimp. I I grew up in one of the colder states in the country, and I cannot stand the cold. I can't stand it.

SPEAKER_04

I hate it too.

SPEAKER_01

I pretty much shut down during the winter, and I I go out and walk and run during the summer months when it's nice and warm.

SPEAKER_03

Yeah.

SPEAKER_01

Uh I'm actually training right now to do a marathon with a couple of my co-workers in September. That's amazing, man.

SPEAKER_02

He might have a marathon. That to me, that's crazy talk.

SPEAKER_01

I could never so I've got a one of the things that I'm definitely gonna have to do is stick to my prophylaxis regimen in order to make sure I'm healthy enough to do it.

SPEAKER_04

Yeah. I think I think what I see you in you, Colby, is a lot in me, is I just wanted to fit in. Like, you know what I mean? Like, hey, you want to put a marathon? Let's go. Firefight, let's go. Like, I didn't I remember growing up, like in grade school, like I saw everyone doing this, everyone doing this. I was like, I can do that. Like, I just want to fit in. Like, I actually didn't want people to know I didn't even feel it. I didn't want to be like, oh yeah, here's Joe the bleeder. Here we go.

SPEAKER_01

I I feel that on a on a on the same level in high school as when I when I started my prophylaxis, I would have to go down to the nurses' station and do my factor. And there was one day a kid walked in, he's like, Oh, what do you have diabetes? And I'm like, Yep, I have diabetes. Exactly. I don't want you to know.

SPEAKER_02

You got it.

SPEAKER_04

No, no, I don't I don't want you to know anything. Like, I I'm just like you, and I'm just have this is just a mere inconvenience. I'm getting back to what I need to do.

Fatherhood, Genetics, And Partner Support

SPEAKER_02

So, Colby, you're stepping into a new chapter now, man. You're gonna be a father. So, how is how is how has that shifted your mindset, man? Does it give you a deeper level of purpose when it comes to your health, your career, the example that you want to set?

SPEAKER_01

It it does. It's it's very nerve-wracking, which I'm which I know you guys have already gone through this, and I'm sure it was nerve-wracking for you as well. Oh my gosh, I'm gonna now be responsible. Having a little girl, she's due July 14th. And one of the things that's been really weighing on my mind has been, oh my gosh, what have I done? Like, this little girl who's about to come into the world is either gonna be a carrier or at the very least, a mild hemophiliac. What if I curse this little girl, this precious soul, you know? And that's been one of the things that's been weighing on my mind. So I've been working my fiancee into infusing me. She infused me for the first time. We've we've known each other since freshman year of high school, so we're coming up on 10 years that we've known each other, been together for four. And it was the first time she'd infused me. She all throughout high school, I didn't tell her I had hemophilia either. So it wasn't until I think we graduated where I finally let her know, like, hey, I have a bleeding disorder, and wow. We started hanging out a bunch and started coming to the events with me just a couple years ago. And now that we're having a daughter, I I told her, like, hey, it's it's it's time to do this. Like, you need to know how to do this. Because if I'm at work, if I'm on a call, I can't come home. I'm I'm stuck at work for 24 hours. You need to know how to be able to infuse if we need this.

SPEAKER_02

Yeah, absolutely. That's amazing, man. That's such a blessing, dude. I'm excited for you. It's the greatest feeling in the world. I'm so obsessed with my little girl. Yeah, I mean, it's I guess I haven't truly let it sink in either that you know, she could possibly eventually have children too, you know, and and pass it on. I can't um but I don't know. I that's a tough one to to really articulate.

SPEAKER_04

I have I have three girls, and one of them does have mild hemophilia, my middle one. And I don't know, man. I I feel like hemophilia, I know it's you might think it's like a curse, but it's also a blessing in a sense, because it, you know, I would never not want to have those kids in my life. I mean, they make me who I am today. Yeah, you could have the worst day possible, and you see them smiling, you're like, it's all good. And uh, I don't know, man. Like, I'm I don't know if I'm gonna stop having. Kids, I got four, I might have five. I just had a little boy.

SPEAKER_02

Listen, you guys sit there and ponder on what you want to do. I'm gonna have more.

SPEAKER_04

I love that. I love my little guys, they're so cute. And uh they bring up my day. I'll just tell you, you know, you having hemophilia and you being in your daughter's life, you're gonna show her, hey, like this is what you gotta do, you know. But the blessing that you have coming into the world soon versus just you know, this we'll call it if you want to say a mild curse, you're gonna make it into a miracle. I would say that.

SPEAKER_02

Because at the end of the day, I'm inspired after that conversation. Thank you.

SPEAKER_01

Yeah, yeah, absolutely. And and you know, the the the positive side of it is I I feel like if she regardless, I think hemophilia is going to make us have a tighter bond because we're going to be the same. You know, I I think that'll that'll that'll definitely help out. And I'm I'm so excited to have have a little girl. I we we talked and talked and talked, like, what would you rather have? Obviously, I want strong, healthy, but I think being a girl dad would be so much more fun than being a boy daddy. Yeah, it is. If I have a boy, then I'm just gonna have to if I have a boy, I'm gonna have to force the boy to learn to play football and eventually get into the NFL and go play for Baltimore.

Advice For Young Bleeders And Next Steps

SPEAKER_02

If my boys are watching this right now, if my sons are watching this right now, I love you guys too, but you know, there is a ranking. I let my kids know there is a ranking. There always there really is. There's and I might and I let them know, hey Landon, you're you're at four right now, buddy. Like you got some work to do to you down, you started here, bro. You got your slack in. McCobe, hey, if there's if there's one piece of advice that you would give to our audience, a a young person watching who feels limited by their condition, what would that be?

SPEAKER_01

Don't don't don't let yourself feel limited for sure. If if I let my if I let everybody limit what I could do or talk me out of every silly or dumb decision that I've ever made, then I wouldn't be where I'm at today. I wouldn't be working career fire in EMS. There's it the possibilities out there are just endless. So if you have a dream to go be an electrician or do anything else blue-collar work related, which is you know physically strenuous, hard. Don't limit yourself on what you think you can do. Follow your dreams, reach for the stars.

SPEAKER_02

Absolutely, man. Yeah, your mindset is so powerful. I mean, your mind your mind can either kill you or build you. You choose what you want to do with it. Uh, I mean, there's there's I don't, I'm not a doctor, but I mean I'm pretty sure there's science out there that your mind and negative thoughts and can can cause diseases and you know, all kinds of stuff. Stress, just stress.

SPEAKER_04

Like stress alone, cause this stuff.

SPEAKER_03

Yeah, stress alone.

SPEAKER_04

And keeping, you know, that I think one of the things we all have in common is we made a decision, we're decisive, and then we push through and we executed. We're we're now here. You get people that are just, I don't know if I'm good enough. I don't know. And you just get in this bad headspace and you can't make decisions. So I hope in the future we can have these mentorship groups to where we can have people that have already done it, like ourselves, leadership, or be like, no, hey, you're confused. Here, go talk to this person, go talk, and we're gonna sponsor that. We're gonna provide that vocational sponsorship. Maybe it's five, 10 grand, and we're gonna pay for you to learn that trade. And guess what? You can't you can't back out, you can't back out and say, Well, I'm a hemophiliac, and I no, there's a guy that is a hemophiliac, and he's he's providing for his kid. Yeah, he's a firefighter. Like, no, like, and I feel like we need that as that brotherhood. We need that, like, no, you're here sitting on TV, Netflix, and doing video games. You need to be here. You're 25 years old.

SPEAKER_02

I feel like we we need that intervention. Yeah, and that's what we're trying to do with this podcast, man. Like, we're trying to get awareness, we're trying to show people that this platform can be powerful with these conversations, these open dialogues, what we've discussed here today. I believe it's powerful, man. And so, like, we've we've already gotten a couple of opportunities for manufacturers, but we we need more. We need we we need people to see the power in this to help us add fuel to to this rocket ship, you know, so that we can share these ideas and not just share them, but execute on them. But man, Kobe, thank you so much, man, for this powerful episode. I think this conversation is exactly what our community needed. It's not just about managing your condition anymore, it's about building a life. So, you know, we appreciate you coming on, Kobe, and sharing your story and your mindset on what's possible when you refuse to accept your limitations.

SPEAKER_01

Yeah, absolutely.

SPEAKER_00

Thank you for tuning in to the HEMOLIFE podcast. Today's episode hopefully inspired you and provided valuable insights to enhance your journey. Join us again to hear more incredible stories and expert advice from our community. Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers. On behalf of LA Guayo and the entire HEMOLIFE team, keep pushing forward, strive for excellence, and remember you are the architect of your own destiny. Until next time, stay strong, stay inspired, and continue on your path to an elite life.