HemoLife Podcast
Welcome to the HemoLife Podcast, where we explore how to live an elite life while managing a bleeding disorder or other rare conditions. Dive into educational, entertaining content with stories of high achievers, expert advice on mental health, nutrition, and exercise, and the latest relevant news to elevate your mind, body, and soul.
HemoLife Podcast
Living With Pain, Choosing Purpose
Pain might be invisible to everyone else, but it shapes every choice you make. Raul joins us for a raw, unfiltered look at severe hemophilia: the joint damage that lingers, the fear of switching therapies, and the quiet courage of showing up for life anyway. From marathon training on short half-life factor to learning about Hemlibra and Alhemo at a community event, he walks us through the hard math of risk, relief, and what it really means to protect your vein health over decades.
We dig into practical tradeoffs—daily subcutaneous dosing vs. IV routines, breakthrough bleeds during activity, and why some patients still keep factor on hand even when they try a newer agent. Raul shares what changed when he met families and kids living with bleeding disorders today: longer-lasting ports, more options, and a real chance to save joints. That hope sits next to identity questions many of us feel: when you’ve lived by limits, freedom can feel risky. Community bridges that gap, giving words to what hurts and turning fear into action.
The conversation turns honest about pain management. Raul describes morphine stigma, the anxiety of refills, and the discipline that kept him steady—clear boundaries with his doctor, slow dose reductions, and zero “extras” for six years. It’s a reminder that responsible opioid use can be part of comprehensive hemophilia care when joint damage is real and severe bleeds don’t wait for stretching. Along the way, we spotlight the power of support: partners who ask how to help, friends who learn the basics, and mentors who say, “I’ve walked there.”
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Welcome to the Hemo Life Podcast, your gateway to transformation and empowerment. Hosted by Elliot Guyo, 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 food survivors. They're here to share powerful stories and invaluable insight. 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_03:Also joined once again by Dr. Joe Milleschi and our special guest, Raul Ivarra. And today's conversation is going to hit deep because this episode isn't about treatment plans or lab results. It's about what it really feels like to live every single day with pain and still wake up with purpose. Our guest today, Raul Ivarra, is a severe hemophiliac who's walked through some of the darkest valleys of this disorder, from managing microbleeds that no one else can see, to fighting the stigma that comes with pain medication and still showing up every single day with empathy, strength, and self-control. Recently, Raul went to Nobo Nordis meeting in LA and met other bleeders from mild to severe. And what he experienced there changed him. He saw the full spectrum of what it means to live with hemophilia in a broken open in the best way possible. So today, here to share a story, raw, honest, and unfiltered. So whether you live with a bleeding disorder or love someone who does, this is one of those episodes that reminds you you were not alone. So let's dive in. Raul, welcome to the show. I'm glad we're having this conversation. Hello, thank you for having me. So you told me that the at the Novo Nordist event, it really hit you. Just being in a room with other bleeders who get it. What was that like for you?
SPEAKER_02:Well, first of all, I want to give a shout-out to Wagner Lemus, because he's the one. So he had my phone number for like a decade ago. And he was just, he just sent like a sent-all text. And he remembered my name from like a decade ago. And he said, Hey, we're having a meeting. I remember you live in South LA, Fogo de Chow in downtown LA. Do you want to go? And I was just like, Oh my god, it's been so long since I spoke to him. And uh yeah, I said, Yeah, sure. I didn't know what to expect. Never been to Fogo de Chow. I didn't even know like how I was supposed to be dressed.
SPEAKER_03:So you who was it again?
SPEAKER_02:That's Wagner uh Lemus.
SPEAKER_03:He is with Fidelitas uh Rx. Okay, I'm just gonna see if I knew who it was. Okay, I don't think I know him.
SPEAKER_02:Yes, he's one of the specialized ones. Uh I'm with uh Brothers Pharmacy. They're the ones who are in charge of my factor. Okay, nice. And then I'm with uh I'm with Kaiser. I've I've been with Kaiser since I was a kid. I've just always been with Kaiser.
SPEAKER_03:Nice.
SPEAKER_02:Yeah, because I know almost everybody else is like either children's or uh Cedar Sinai or the orthopedic. Yeah.
SPEAKER_03:So I let me ask you, what stood out the most about those conversations? Hearing stories from people who infuse once every two years, all the way up to, you know, you said you know, you're infusing every 48 hours, every hours.
SPEAKER_02:Uh the main thing was like the the the the person who has hemophilia, what factor they use, their management. The big thing was joint health. I kept asking everybody. Like to compare, you know, my arthritis versus their arthritis. That was the main thing. I was just so like, what's your joint health like? What's your joint health like? What what how are you dealing with that? Because that's the like the number one issue that I realize now, you know. Maybe as kids you don't think about it until you reach this point where you go, oh no, there's no you can't rewind that back. There's no surgery, there's no treatment. It's kind of that's it. And that was the main that was the first question I'd ask, besides asking them, you know, what factor do you take? What factor do you take? And they were all surprised that I was on alphanate. They were all surprised I was on alphanate. Like it felt like, oh wow, people Why were they surprised about that?
SPEAKER_03:Because everyone's switching to newer medications? Is that yeah?
SPEAKER_02:So the major one was what is it called? Altuvio? Altuvio Altuvio's one. I mean Altuvio, Hemlibra, and uh there's an Alhemo.
SPEAKER_03:Al Hemo's brand new though. That's like really new. So I'm not sure how many.
SPEAKER_02:Yeah, so that was the sponsor, Al Hemo.
SPEAKER_03:Oh, Al Hemo, because it's the Novo Nordis Pro program. Gotcha.
SPEAKER_02:Yeah, okay. That's the one. Yeah, that was the one they were they were telling me about, Al Hemo, which looked very interesting.
SPEAKER_03:So what are you what are your thoughts on that then? I mean, what were what was like the overall? I'm kind of like excited to hear about like what people were thinking about this new medication.
SPEAKER_02:Um, so everybody, the main thing they pushed upon me was you're on alphanate. I was on advate before. Advate was only every once every 12 hours if I was bleeding to once every day. And the half-life was very, very, very short. Like looking back, I should have switched off of that years prior because the half-life was so short. I was running, trading for the marathon, and I had a lot of bleeds in my elbow, which resulted in you know a lot of joint damage in during those years. Versus now where alpha nate, it's 24 hours, so I have at least that coverage before it kind of falls off. And they were all telling me about their experiences with the different factors, and the main one was was uh hemlibra. That was the one they were telling me about. Hemlibra. And they pushed upon me like you should switch.
SPEAKER_04:I have how old are you, Raul? Uh 32. Okay, so I'm 38, LA, you're 37, right? Yeah. So we grew up on Factor, all right? I was on Advate, you said you're on Alphanate, there's been cogenate, uh, adynovate. These are all factor-based products. And so, yeah, it's interesting to see like the newer generations, uh, like, you know, they're they've only only thing they've ever been on is like hem Libra or subcutaneous. They never had to find a vein or whatnot. It's just interesting to see that transition. I mean, me personally, this is just, you know, I'm a patient. I'm not just a doctor, I'm a patient too, uh, because I have severe hemophilia. Uh, so I personally prefer the factor because it's something that I've always, you know, I've always trusted. Like I'm a little uh, I guess, skittish when it comes to the subcutaneous injections. That's just me personally. Uh, I don't know about ULA, but I don't know.
SPEAKER_03:It's we we even from our meetings, I mean, we've had discussions with the NOBO uh reps. Yeah, and you know, there was cases where the injections call caused some kind of yeah, uh, what was it like like some like whether you like kidney stones or what I'm I don't know what they were doing? I think so there were some liver issues and I forget what there were some liver issues and stuff like that. They realized in their studies that at one point they had you have to go in for a checkup to see, you know, how it's going and making making sure you're not having those kinds of reactions. I'm not gonna I won't speak too deep into that, but I just things that happened during that time frame that you have to monitor. So interestingly like black black box, they said something about black box, black box studies, I think they were saying, Yeah, like I said, Dr. Joe and I we we had about an hour meeting with them because they they showed us the the device and how simple it was, but it was but it was a a daily use, so as opposed to uh uh Heme Libra, which is like once a a week or something like that. I'm I'm not 100% certain, but uh they were asking, you know, what would you know what would it be like to do that every single day? Like, is that a deterrent for some people? What do you think, Raul is doing like go ahead, actually?
SPEAKER_04:Yeah, but it is like, and I'm gonna get Raul's take on this, is like you have to use it daily, but the needle size was smaller. So the Alhemo was like, you know, you you you have to do it daily, but the needle is so small, it's like the size of like a hair, like a human hair. It's like super small. So that was her trade-off. I mean, what's your thoughts on these new uh you know injectables?
SPEAKER_02:Um, so for Al Hemo, I was very impressed with how little liquid it actually administers on top of the little tiny needle. Because they did give us an example, and everybody was playing with it, and some people push the button, and you hear you hear it when they like popped out and squirted. And the main thing uh for me at my age is is uh like vein health, you know? Because um I have an aunt who's a ER nurse and she's met hemophiliacs in their 50s, and she's kind of like the hemophilia nurse because she knows so much about it, so the doctors will come to her and be like, hey, hemophilia. And she met a person who he was having a bleed, uh, I think he broke his arm, so they had to sedate him and they had to inject him in the neck in order to find that emergency vein. So that's been my like worry with like what is our vein, what is my vein gonna look like, you know, every 48 hours and 10 years and 20 years. And with the subcutaneous, I mean, I have a port, I had a port, I've been injected. It's kind of like, you know, it's you gotta get used to it. Whether you like it or not, even the the idea of injecting yourself is so uncomfortable because you have to inflict yourself pain and yeah. I don't know, I don't know how it looked like the the little scars after a while, or if you can even hit the same spot, or if you have to move around, or what that even looks like. Yeah, but yeah, I mean for it to be every day, and it's just I mean, you don't have to mix anything, you don't have to get needles, you don't have to get syringes, you just what is it, a replacement needle or screw on screw on tip.
SPEAKER_04:It's like a needle that has a screw on tip. Oh, okay. I mean, yeah, so it's just interesting, just like anything when it something new comes out, you know, figuring out like, hey, is this something that I can see myself doing, looking at the risk and benefits? And um, I don't know, it's it's interesting. I'm happy that they're coming along with these new innovations.
SPEAKER_02:Yeah, I never imagined it. I never I remember they would tell me, like, oh, we'll have four days of factor in 20 years. Maybe once every four days.
SPEAKER_04:Do you remember all like the big syringes like you'd have to like put so much factor in? Like, I just know like back in the day, it wasn't like five CCs, it was like 30 or 40 or 40 or 30 or 40 because each box was like 200 units.
SPEAKER_02:Yeah. And they would just give us no, no, so like my friends from high school, uh, they've supported me so much through even people in high school, and they didn't believe me when I would tell them, hey, I need you guys to go with me, because they're gonna give me eight boxes of just two little things. And one time we went with me and I bought a McDonald's, and they they just started handing out boxes and boxes. And in my friend's truck, we loaded it up. It was eight boxes, 200 units each, uh, 60,000 units, you know, 4,000 a dose. So you could probably do the math there. And because it was, you know, we were just like, hey, is this gonna get hot? Is this gonna expire? We rushed home so fast. That back when I had to go get it at Kaiser, we rushed home so fast. And that like, that's one thing I'm grateful for with the newer stuff is that it's more consistent in the higher dosages. I remember when with it was uh Advait, when they one time they sent me a 4,000 unit box that was black, it was all black, and I was like, oh my god, what is this? That was that was cool. So for for that alone, because in the 90s, I remember they would just say, Yeah, there's no factor available. The companies can only dispense so much, and we would have to fight. We would fight, like we would have to fight with them. We have to tell them, you know, there's an inhibitor, he's bleeding, he needs it. We can't just survive on however many 800 units for a week or for a month. Yeah, so that change that change alone has been incredible.
SPEAKER_03:So I'm curious on a spectrum right now, after the Novo event, on a scale from zero to 10, where you know, zero, I there's no way in in heck I'm gonna switch. 10 being like I'm I want to switch tomorrow. Where do you find yourself on that spectrum right now? I'm still curiosity and and research and comfort.
SPEAKER_02:I'm still 50-50.
SPEAKER_03:50-50, right in the middle, huh?
SPEAKER_02:Yeah, because I used to take what was it called? Monoclay. When I had my inhibitor, I they took something that was yellow, and then uh they gave me coginate, and I all got sick from all three of those. Like I would I would vomit. I would get dizzy, I would vomit, I would my I would get like hot flashes. So each one of those factors from a young age, because I had an inhibitor, they had to give it to me. Um, I would take it and then I would vomit immediately. So that's three different factors. I've had mixed results. Alphanate itself, I don't know how to describe it, but like up here, I would always feel something. I don't know if that was the liver, it always was consistent. Even right now with uh I'm sorry, advate, I'd feel something. Even with alphanate, every time I infuse, I feel like my joints always feel achy. So I always have to infuse at night. So like I'm very sensitive. I'm very sensitive. On top of tasting it, I've always been able to taste it. So I'm very sensitive in that aspect.
SPEAKER_03:I could I could taste mine.
SPEAKER_02:My mother too. She she uh she's very picky on her medications, even though it'll be generic, she'd want a certain company because she says it just feels different. Yeah. And even and like I've gotten sick from flu shots, I've gotten sick from so many medications, and like it just always feels so that's my worry about like what's gonna what is it gonna happen? Because I'm gonna feel something. If each factor I felt something, what is this gonna feel like? Yeah, especially with hem Libra and how they talk about the loading doses, how they have to like load you up, yeah, what that experience would be like. And then with Altuvio, it's a week. So, like, what if I take it and I just feel bad and I have to wait a week? That's my my main worry because they kept asking me, What are you afraid of? What are you afraid of? They pushed me, they were pushing me hard. I had three, four people that were like, What are you afraid of? Why are you afraid of this?
SPEAKER_03:Man, they need some answers.
SPEAKER_02:They were kind of telling me if you if factor didn't exist yesterday and factor existed tomorrow, why wouldn't you take it? And I was just like, uh, I'm just afraid. I said, I'm just afraid. I've I've gotten sick so many times. And not just that, but the cost. Like, what if they give it to me? This amount of money was spent, and then I don't like it or I don't want it. Now I have this expensive thing. Yeah, that what can what can I do with it?
SPEAKER_04:In my opinion, on any medication, I don't care if it's hemophilia, it's antibiotics, it's cholesterol medicine, blood pressure medicine, you really just need to like, in your case, you're sensitive to meds, you need to look at like what are the side effects? I mean, I know we just take it for granted, like, oh, hemophilia, it's gonna stop bleeding. But what about looking at the side effect profile? You need to do that too for any medication.
SPEAKER_02:Yeah, and then I mean, if it were to make you vomit and it's like, well, I either get nauseous or I stop I keep bleeding, it's kind of like it's the trade-off. And that's kind of how we've looked at it. Because a lot of times the doctors, when I was a kid, they they I was a kid, so they didn't really take it seriously. They would see me get sick, but I had an inhibitor and I was bleeding, and at the time I didn't have a port yet, so I had to go in every day or so or just go to the emergency room. So it was very in that aspect, it was very um unfortunate that we I couldn't advocate for myself yet. My parents didn't speak English yet. They just sort of were like, you know, telling me like you have to just go through it. This is just what it's like. Versus now where I'm older, where I'm more willing to advocate for myself. Even if it's just something small, I get nauseous, I feel weird, I don't like it. After a year of telling my doctor that, he'll finally go, Hell yeah, you've mentioned that before. Even if it's so tiny that, like, what can a doctor do at that point?
SPEAKER_03:Have you spoken to your physician about um new treatment options?
SPEAKER_02:Yes, he has been updating me uh ever since like the the gene therapy stuff because he was around 2021, he told me, he was telling me, Oh, I'm gonna have a meeting soon with with all of Kaiser, and we're gonna discuss the treatment options and like how we're gonna go about the process with the hemophilia B. I forgot what was the the treatment that was gonna be used, but he was telling me, he was telling me about it, he was telling me about the data, he was telling me about everything and how they were gonna actually start calling patients to be like, hey, we would like to administer this thing, would you be interested in it? So he's been very uh hopeful about it. It's just with hemophilia A, he feel he personally has told me, like, I want to see more data. I want to see five to ten years of what it looks like.
SPEAKER_04:And that's yeah, and I and I agree, I don't know, like with anything, how I am. I mean, you sounds like you're sensitive to meds. And I'm I'm I'm the same way. I just like if they came out with a cure tomorrow, be like, we got it, we got it. Cure, let's go, let's let's just inject you. I'd be like, hey, time out, time out. I've lived 35 years, I mean, I've lived 38 years on this planet on factor, and I've been pretty good. Like, I don't know. I I would agree with your physician. I need to see more data. Like with anything, any new and cool things in medicine, it might be approved, but I just like I don't know. I want to see the timeline, I want to see the more data points. Like, I'm not the type of guy that just like, yep, hook me up, let's go. Like, that's just not I don't know. I think Raul, you're probably the same.
SPEAKER_02:Yeah, I'd rather have a person tell me like I'm on it, this, I took this gene therapy. First of all, like what it feels like, because I've spoken to some people that were on Hem Libra, and they said how after a year and a half, they were just having they were doing physical activity and they were still having smaller bleeds where you still needed uh factor to to replace and cure those bleeds. And that's what my doctor said with Altuvio, where he said, Yes, I I can give it to you, but he said you would still have to have your uh alphanate on hand for breakthrough bleeding because he he knows I like to run, he knows I like to go to concerts, you know, mosh pit here and there. I help around the house, and he said, you know, you can get hurt, and and altuvio might not be able to fully cover you, but you might have that breakthrough bleeding. And that's where the the second thing was like, do I want to balance two factors at that point? Like, how would that look like? So I'm only receiving half of my alphanate on top of the altuvio, and then I need everything, all the injection supplies. What's that gonna look like? So then that's when my doctor's like, if you feel comfortable with this, which I do, it's like, yeah, it's it's not broken, it works. It's just the 48 hours. That's that's the all the other thing that they were like, yeah. I'm once a week, I'm once a week, you're every 48 hours. And then uh a couple of other people, like the my the mild, they couldn't believe it. They couldn't believe it. The ones that were like, oh, I infused two years ago, I infused five years before that, and you're every 48 hours. And I was just sort of like, yeah, I mean it's better than 12 hours, I guess.
SPEAKER_04:I mean, for us severe hemophiliacs, like I feel like for me, like growing up, we're all kind of like the same age. It's like, you know, I if I'm gonna go do like go to a concert or do something, you know, run or something like that, go to a marathon, like I want to make sure I'm I'm I'm factored up. Like, I don't want to be like, oh, I did a shot seven days ago and maybe I'm gonna be okay. Like, that's not like I don't know, it's not like a it's maybe a psychological thing, but like if I am I'm gonna go lift weights or I'm gonna do this and that, I want to factor up. Like that's just something that's ingrained in I think us 30-year-olds. I think maybe like the 20-year-olds, I have a brother that's 25 severe hemophilia as well. And like he's on factor, but maybe his generation would be more apt to be like, no, no, no, just give me a shot up, whatever, I'll be good. I'll see you next week. Like, I don't know. I think that's where we're a little different because that's what we grew up on. Like you just talked about like picking up a big truck full of medicine. That's that's what we're used to. Like, fill up the syringe. Like, we gotta factor up because we gotta concert tonight, or we gotta we gotta run a five-mile, uh, a 5k or something. I don't know. Like, I think there's a psychological component too, you know?
SPEAKER_02:Well, there is. There's a huge psychological component. And even like if we were to be cured tomorrow, I don't know. I feel like it'd be more negative than positive because so many things would just, oh, I can't do that. I might get hurt. Oh, you know what? Maybe. Because I mean, you live your life through so much, like, I can't do that, I gotta watch out, I gotta go down the stairs, and to suddenly have it gone, it it'd be an identity crisis at that point.
SPEAKER_04:Yeah, let me ask you this. So when you were out there and you were conversing with everybody, did you like uh I know you guys talk probably meds and stuff like that, but did you guys like well, me in LA really uh when we do these events and stuff, we really love getting everyone together. And our last event we had like 20 plus people. Uh, it was a great event in uh Houston, Texas. And you know, at this event, my question to you is is was there a lot of guys there that you were able to connect with uh and just start like uh you know a relationship where you guys were really being into mentoring and like really like you know get gathering everyone together to build friendship, mentorship, and long-term connections. Is that that's the kind of camaraderie that you experienced there? What what else did you experience?
SPEAKER_02:Yeah, I did I did feel the camaraderie because uh a lot of them through children's they've been seeing a lot of the what is it, Dr. Guy, I believe his name is. They've been seeing him for before when they were teenagers. So a lot of the people knew each other already. There was a lot of people that haven't seen each other in a while, a lot of everybody knew each other, and then so I came in kind of feeling weird at first because I was just sort of like I'm just some random guy. But then I don't know, once you started talking, it's suddenly like it opened up again, I guess. It's kind of like, oh wait, no, we're we relate so much.
SPEAKER_04:Yeah, I think the relatability is huge. Like to be able to say I've walked in your shoes. I mean, I don't know. That's something that's really special, I think, for uh somebody that might be confused about where they're at in that step journey of their life, whether they're adolescents, adults, or you know, they're raising a family. Um, just to be like, Yeah, I've walked in your shoes. I'm I'm actually raising a family myself. Me and LA, we uh both have four children, young children. I do. And yeah, me, I just brought my baby boy into the world about three weeks ago. LA's gonna have a daughter coming into the world in the next couple weeks. So we're at that same uh life journey together, like together, you know, and I think just having that ability to connect, we both have hemophilia, we've both been through a lot of struggles in our life. And so I don't know, we hope that you know, with any event that you go to, you're able to connect. I mean, and have that camaraderie, that brotherhood. That's that's what we like to do in our uh our events.
SPEAKER_03:Yeah, you said that there was a moment that you described and it made me stop reading it. You said when you saw the kids at the event that it broke you. You said I just wanted to hug them and take their pain away. Makes me wish I was the last hemophiliac in the world. That's a heavy and beautiful thing to say. Talk about that moment, what went through your head.
SPEAKER_02:So there was uh a kid who he was on his first, uh, he was nine or ten, and he was on his still on his first uh port. So I think he had it since he was three, three or four. And she told me that he she had a friend who wasn't there who was at 15, and he still was on his first port. And it blew me away because I had two four ports, one seven years, one seven years, one month, one month. So to me, I thought that was the limit. Like you go to there and you just kind of had to move on. And no, he he still has his like what do they call it baby port? So it's like this little tiny thing, and she just says, like, it just they make it work. He has to like really stretch his chest out and to get it, and he's used to that. So the idea for him to actually inject himself scares him. And he says he almost has like panic attacks. And they were asking them, what are you gonna do as he gets older? How is he gonna slowly learn how to actually infuse himself? Is he gonna want to continue getting ports, or uh will he want to switch to like the subcutaneous ones? And uh to the kid, I immediately showed him my like my port scars, and I said, Look, look, like you have one right here, I have one right here. And I just told him, like, I don't know, I just felt so much like grief, so much like, oh little buddy, you there's so much you have to go through, there's so much you have to experience. And unfortunately, learn as a hemophiliac, like you do have to learn how to inject yourself, you do have to learn how to advocate for yourself and how to process pain and how to process all these emotions that go through you. That through my teen years, I found out the hard way. I lashed out a lot at people because I didn't understand. And to see like someone who would have a panic attack at trying to inject themselves, it's kind of just like, oh man, like you almost have to sedate yourself to inject yourself, and it's just like you shouldn't have to go through that. And like what 15 years ago, I I assumed every kid had to get a port. That's what it was, like what in the 2000s where every child had to get a port. Yeah, I had a port. Yeah, and then now there's more options where where you could actually start with subcutaneous, and then you you don't have to like there's so many options now that it's so like hopeful because it almost makes me feel like just like this old relic of like you don't have to do that anymore. That's not that doesn't have to be done. There's new ways, there's better ways. And it's it's hopeful for me for the for the kids because they have options, first of all. There's so many options, there's so many different treatments. And their joints can be their joints can be saved. That's the second thing, too, that makes me sad of like like I just wanted to be like deep down inside. I'm sure every hemophile must feel it, where they want to prove to themselves or prove to the world something physical that they can do, you know. I I've spoken to a hemophile that played football, like tackle football, and I wanted to be like, whoa, what are you doing? And he just said, No, I just infuse. I infuse and I go play. And that was his life. And I wanted to be like, hey, take care of your joints, because that you know, but he said, No, no, I I it it doesn't bother me. And then for the kids, they um I mean I I ran the marathon, that was my thing. I ran the marathon twice, and it did mess me up a little bit, but that I had to do that for myself. And uh for Aguayo, I mean he lifts he lifts a lot of weights, so I'm sure like we have that thing we want to prove to others that we can do it, that we're not we're not gonna be able to do that.
SPEAKER_03:Everything you say, everything you're saying, I resonate so deeply with. I mean, it's hitting home. I get I mean, there's I'm getting chills a little bit just because it's like there's somebody else living this exact same life, going through these same emotions, and it's weird how we go through this. And when we think about the next generation, what they're gonna have to go through, it like really affects us because we wouldn't push this on our worst enemy, despite the fact that we did find a way to still live our best life and that we did become better people. We've grown from this disorder. Um, it's which is amazing as well. Like Dr. Joe said in the last episode, is like he, you know, he wouldn't be who he is today without going through um what he went through. So it's a blessing and a curse at times, but the the future looks hopeful.
SPEAKER_02:Yeah, and then the the second thing too was the the people in support of the hemophiliacs. Yeah. Because there was an individual who uh his wife, they've been together for three years, and she was there at the meeting because she kind of wanted to understand how best she could support her husband. Because she said, you know, sometimes I've tried to understand his pain. He described it to me, what he feels, what he might need. And it like really brought memories back to me in high school. So I visited a friend uh over the over the weekend and I met her mother, and she told me how when we were 14, she would come home to her mom one day and she said, Mom, I have a friend who has a bleeder. He sometimes bleeds from his elbow, he sometimes bleeds from his ankles. One day you're gonna have to take him home to his house because he walked home. And she told her, like, You I you have to do this for me. And her mom was confused, like, what do you mean he bleeds? What are you talking about? And she was like, This is what's gonna happen. This is what's gonna we're gonna have to do one day. Maybe one time he's gonna come to the house, and I want you to understand this isn't the type of individual he is. Her mom told me how, like, this be this little girl that was 14, 15, and she'd be crying to her mother because she would tell her, you know, he's bleeding. I saw him today at school crying, and I don't know what to do. I don't know how to do what to do it for him. And at school, I didn't understand. I would just say, I don't know, distract me. That's all I would say. Some sort of distraction, just not think about it. And meeting her mom and being reminded of that, it just reminds me of like, no, don't feel bad for me, you know. Let me be the let me be the person in pain. You don't have to feel bad for me. Just sort of like, if I ask you to do something for me when I'm bleeding, whether it be hand me something, if I'm on my cane or my crutches, but don't feel bad because then we're all in pain. And that's kind of like what we're trying to prevent here.
SPEAKER_03:Yeah, that's powerful, man.
SPEAKER_02:So that was the yeah, I don't know. Yeah, my parents, I'm kind of like, well, they're my parents, you know. But with yeah, with my friends, it's kind of like uh, goddamn it, you know?
SPEAKER_04:Yeah, yeah. I mean, I had a I mean, I I personally had a lot of my friends that helped me or whatnot. And my friends, you know, uh sometimes they didn't understand. And uh I was made fun of a lot in school. Uh, and I don't come from a line of doctors or anything like that. So I had to like really fight tooth and nail to get where I'm at. But I've had a lot of good mentors. Interesting enough, my mentor, the guy that really inspired me and helped me through med school was uh from Guatemala. Oh, really? So uh yeah, Dr. Byron Santos. Uh so he was an ophthalmologist. He lived in Guatemala and he came here when he was in his 40s. And uh he was my mentor. And so, I mean, just like you were saying that, you know, having these, you know, people in your life that really inspire you, or you know, maybe just strike a chord with you. Um, you know, I I think that's really essential for any bleeder to have somebody that's just there to be their uh sounding board and their support. Um, like you just said, like you just just distract me. Just, you know, uh just help me through, but I don't want you to suffer. And um, I don't know. I I think I think having hemophilia really builds you up in certain certain aspects, but we're still human, we're still real. And there's times that you know we can cry, we can be sad, we can be upset um because we don't want to wish this on anybody or any future generations. But being in our 30s, we did have to deal with a lot of pain, believe it or not.
SPEAKER_01:You know? Yeah, yeah. No, I've dealt to so much. I've dealt to so much.
SPEAKER_03:I have I have a question before I jump into the next segment. Uh-huh. Did you kind of like live your life and do you maybe still feel like you live your life misunderstood with a lot of things? Or do you feel like people are are do like with relationships in your life?
SPEAKER_02:Um, misunderstood. Maybe not now that I can describe and I can show people, like I can show them what hemophila is, what it isn't, because obviously you've heard it. So if you cut yourself, you die. Or see if you just get a little cut, you're gonna bleed to death. And I'd be like, no, no, no, I've gone into mosh pits, so it's not that yeah, it's not that easy. But also, I mean, I grew up in a lower income part of Los Angeles, so there was a lot of ignorance uh as a kid, and I was made fun of a lot. I was made fun of a whole lot, and all through uh elementary school and middle school, believe me, I cried because my parents taught me that like if you're in pain, you cry. That way you let it all out. And I was made fun of for it because in my head I thought like that's just how you express yourself, and then slowly through those years, I had to toughen up. I had to really toughen up, and I kind of pushed myself to one day, like, no, I'm not gonna cry anymore. I'm just gonna just not. It doesn't matter how much pain I'm in, I'm not gonna cry. And it was good and bad because uh, you know. When you're in pain and you're in those depths of despair, especially as a teenager with so many emotions, it was not that good. And then later on in life, with my ankle pain and my arthritis, I've realized how like we can just go into some holes. We can go to some really, really deep holes. And you don't come out of it the same. You you come out of it, you know, shell-shocked in a way. Because you just you understand that, like, I understand that at least when I'm in that hole, I'm gonna think of some crazy stuff. Whatever goes through your brain just kind of goes through your brain and you let it go through. And when you come out the other side, then you can process it. Then you can either block it, block it in and however it is, and just understand that was a different me versus, you know, when I was in pain. And a lot of my my friends, the reason they look up to me as a teenager was because they always told me how you have so much life, you just have so much energy, so much life in you. And then when you're bleeding, it all just is not there anymore. I don't have hemophilia, and yet I want to complain about things. I want to complain about life. And here I see you. And they would just say, you just live. You live your life so much and you understand life, and you have a perspective that it's just so different from me. And I have so many people that like they never complain. They never want to complain about their own pain to me. Because they all want to say, you know, my back hurts, my joints hurt, my knees hurt. And then they look at me and say, Oh yeah, I'm sorry. It's probably nothing to you compared to you, the stuff you go through. Or whenever they do feel pain, whenever they do feel really bad pain, they'll say, Is this what he feels? Is this is this what he feels when he's bleeding? And I've always described it as like, if you ever put a marble on your joint and you put a weight on it, that might be what you kind of feel as a as a joint bleed. And they would tell me, like, yeah, I would never do that. And I tell them, yeah, and that's what we have to go through. That's the pain we have to experience. So it's it's it makes you grateful as I gotten older, it makes me grateful for the people that support me. But then I also understand there might not be people that understand it, that want to understand it. And my goal uh growing up has been like, if if I can teach a person about hemophilia that if they ever meet another hemophiliac and they know, oh, okay, so I understand. So you take factor, what factor do you take? What is your dosage? I under I already know that hemophiliac is gonna be so open because they don't have to say the same script that we've pre-prepared for many times for many people to say many times, to encounter the same amount of questions. And that that's kind of like the one thing I've had. I actually do have family in Guatemala who are doctors, and my cousin, she specialized in uh coagulating and bleeding disorders because over there, unfortunately, factor is expensive, incredibly expensive. And she uh is the head of a lab where I believe they specialize in trying to find cheaper and alternative ways to to make uh blood coagulating uh factors. And she told me, like, I mean, how um how many people have you had that have told you, like, hey, I'm doing a seismic experiment and I want to make it uh uh chemophilia? My aunt in her med school, I've had people in biology class who I want to do a presentation on this. And they would interview me and they would talk to me and I would tell them all these things. And yeah, there's I'm grateful. I'm grateful for the people in my life. But I I do not know, I do go through life defensively where I almost don't want to share sometimes unless it's necessary, unless I'm bleeding. Like recently I had I I was bleeding for my back and I had to use a cane, and people were just like, oh, what's wrong? And I said, Oh, my my back, it's a bleed, but it's not, it's gonna go away. Oh, this isn't permanent, it's gonna go away. And you really do see the difference in the people who are willing to to help you, to do small things, you know, even such to help me to walk over some stairs, hand me something, versus the people that are kind of like just looking at you because it was a party and a lot of people were looking at me. And that's one of the unfortunate things is like seeing uh someone my age with a cane on the bus or on the train and people won't give up their seat or they kind of just look at you funny. That's been one of the interesting things because how you know how society sees it and how we have an invisible an invisible uh sickness where you can't just show you can't just point to people. This is what I have.
SPEAKER_04:And to you know, talk about the invisible sickness. I feel like I was made fun of, bullied throughout my whole life pretty much, uh until I got into like you know college and whatnot. But basically the kids just didn't understand. Like, wait, he was on crutches a day ago, now he's not on crutches, he's a liar. Like, that's what I always got. Like, oh, he had his arm wrapped, now today he doesn't have his arm wrapped, or his he couldn't walk, now he can't walk. I don't know. I feel like you know, that insensitivity, like you said with the cane, like people just don't understand, they don't know, or they don't want to understand.
SPEAKER_02:So yeah, yeah, yeah. That and how life moves on, how life is so fast. And it you almost I mean, as a kid, you had it where like you feel like you were being left behind, or you couldn't go out and play with the kids, but the kids could go out and play. Yeah, I felt that was the that was the that was the big one. And for me personally, I didn't meet another hemophilac until I was 14. So that's unfortunately Kaiser didn't really tell me about like stuff, groups and stuff that were out there. They just kind of the doctor at the time he would just treat me, okay, you're good. But I went through that, like feeling like I was the only person with this. And I would always ask my parents, I would ask other people, like, why me? Like, why out of everyone in this universe, like why me? And that was the hard one. That was the hard one. And then that's where in meeting the kids, I kind of want them to see like you're not alone. Yeah, it doesn't matter what question or what emotion you might have, negative or positive, that there's always gonna be now a hemophiliac older than you that can answer it or support you, or like however it might be, that can then tell you, you know. I've hurt myself doing this, I've believed doing that, I've felt these emotions. I I don't have people around. I wish people would understand me. That's the big one, you know? Yeah, that was that was the big one for I've had.
SPEAKER_03:Yeah, man. Well, thank you, thank you so much, man, for sharing a lot of this.
SPEAKER_02:No, yeah, it was it was a good meeting. It was a good meeting. I felt like very warm. My cousin uh he went to pick me up and he was like texting me because he hadn't wanted to go to bed. And all the people I met, especially the the families, the families I met that were they all were hemophiliacs. So they knew from a long age that um because uh we all all the families had stories, you know, where they didn't know, where they went to the hospital, they separated the kid the mother and the child, and they had to go through that whole thing of like two, three days of trying to figure out just how, how, what's going on here. And that that's the one that's kind of like uh it's unavoidable. And all the parents had that, and then the the grief of being told, hey, your kid is um, this isn't just a bruise, which what's going on here is this, and then going through that discovery process. And there uh there were no parents there that that had a child or a younger child like that. The youngest child I think was eight or nine. But I have been to meetings where um there were parents carrying a baby, and that's where my mother and then the parents are such strong people, too, that I look up to personally, because we're just sort of we are we're on a track when we go through our pain and we go through our bleeds. But the parents, there's so much they have to take care of, there's so much they have to handle, and there's so much understanding that has to go into that from their perspective at least.
SPEAKER_03:I I feel like this this episode has been extremely powerful. Honestly, Raul. I I think that this is going to be the best podcast episode that we have done yet. I I swear it's um the things that you've said have really hit home. Um, so I really want to finish with the powerful topic that you brought up, and it was about pain management. You've been open about being prescribed morphine and how your doctor actually increased your dose because you said he trusts you. But you said something really honest. You said, I still see myself as an addict because if I saw pain pills in someone's cabinet, I'd want to take them. But I haven't taken any extra pills in six years. I mean, that's real. Can you share um what discipline and control looks like for you in that situation?
SPEAKER_02:And I just think that there's others who are gonna go who struggle with this and have um Yeah, after the marathon and I started experiencing pain, I was given um, what is it, T3, talking about with coding? And uh a few times I was they only prescribed me like 10 just to see because they would tell them, hey, he's bleeding so much, he can't sleep, he's screaming in pain, and he's missing school for a week because he's either not sleeping, and they would give it to me. And that was the first time I experienced that. Like, oh my god, this is amazing. Like, I've gone all through these years of just going through pain with nothing, and now there's something. So when I turned 18, it was a different time in pain management, obviously, back when you could go to the ER and they would prescribe you, you know, a big bottle of pills. They they put me on morphine early on, and I didn't understand the the cost, I guess, that that's the whole mental thing of like you can take an extra one. What if I just take an extra one now and I'll feel better then? And uh through 21 to 23, it was pretty bad where they wanted to cut me off, they they cut me off, but my parents were the ones that we all showed up, they all showed up for me to the doctor to say, I don't I don't know what you think is going on, but my son is not a drug addict. He's doing this because he's in pain, and we're there for him, you know. We we he's not doing it on his own, we can take charge of it. And they thankfully allowed me to to go down, but then the time I wasn't on it was very bad. Like the pain was just very, very bad, and I couldn't cope, and it was really, really bad. And then that's when I switched from the pediatric doctor to the uh adult doctor, my current one, and they had a different perspective where they did put me on it was a doctor that put me on a lot, actually, like 150 milligrams a day of uh what is it, not coding. It was extended release, and it was another one, quick release, which was looking back was a little bit too much, maybe a little bit too much. I should have just been like, hey, instead of 30 milligrams three times a day, we should have just done, I don't know, five, ten, fifteen. So unfortunately, I experienced that and I thought I was like, oh wow, this is amazing. But the drowsiness, especially as you get older, you feel the drowsiness more, how you just want to take more naps. Uh the refill process was always the the worst. That was always the worst because if my doctor wasn't there and they would see my prescription, the doctor immediately just looked at me differently. He either wanted to see me personally, he wanted to ask, and one time in particular, they just said no. They said straight up no. And I went to the ER and I begged. And I felt horrible. And this doctor came in, she gave me a prescription for four pills just for the weekend, and she said, I'm only giving you this because uh people when they're when they're in withdrawals, they'll go out and they'll buy heroin, and I don't want you to go and overdose of heroin. And it felt I felt like trash. I felt like I was just a criminal, I was the worst person in the world, and I didn't tell her no. I didn't say no, I'm not gonna take this. I I I took it because I was already 12 hours, I think 18 hours in withdrawals, and uh that whole experience of being in withdrawals, going through withdrawals. I've never been past let's say two, three days of withdrawals, so I know it could be worse, but just how you can take it and it goes away, and just that like that oh man, that that thing, withdrawals, wanting to run away from it, but also understanding that like it took me years to understand that no, I'm in pain because my doctor slowly he went from 150 to where we are now of uh 15, three times a day, and we were cutting halves, we were cutting corners, and I I we reached the point of that equilibrium where I told him honestly, I said, Look, I know you want me to go down, but if we go down, my pain becomes unmanageable, but we're not at six pills a day, which which he allowed me for a time just to just to kind of get me out of his hair. But uh and that's where we've kind of found that balance, and we've been there for with my doctor since I was 23, 22, so a good eight or nine years where I've I've proven to him that like I'm not gonna mess up, I'm in control. Even if he's had to tell me sometimes, I'm giving you this much, it's gonna last 30 days, and I don't care what happens, I'm not giving you anything more. Like, even if you come early, even if you come complaining, even if you have a broken leg, he's had to tell me that, and being treated differently by pharmacists, uh seeing orthopedic doctors and them seeing, you know, seeing my file, but then once they see that little word, oh, you take morphine, being treated differently.
SPEAKER_01:Yeah.
SPEAKER_02:And that's been the part that has been difficult, but it it it's taken me into the past three to four years where I finally understood that, like, no, no, I I deserve this. This is my prescription. My doctor's given it to me. I've abused nothing and not feeling nervous. I used to feel, oh my god, I used to feel nervous. I used to go to the pharmacy and think today they're gonna say no. They're just gonna say no, no, we're done, you're cut off. And I've lived years that way, and I still feel it. I mean, I've unfortunately I suffer from a little bit of anxiety. Sure. And that that's been the that's been the big thing. That's just been getting over that itself. And then also personally understanding what I know. I asked myself this question, like, how do normal people do it? I say, you know, how is it that normal people can live without this? And yet I feel like I need this to to be normal, to not be grumpy, to not be angry, to not be sad. That's the the big struggle nowadays that I that I balance myself with sometimes.
SPEAKER_04:Yeah, I think a lot of patients, thank you for sharing, Ro. I mean, a lot of patients probably uh that are in their 30s or 40s uh or older that have chemophilia uh probably are on some type of chronic pain uh management because I mean the factor back then wasn't, I mean, we know wasn't that good for even prophylaxis. The word prophylaxis, I mean, we were on-demand treatment where we we get a bleed, great, do a shot. There was no preventing anything. And so a lot of us, uh, I would say, you know, in this age group, 30s, 40s, 50s, we have joint damage. And part of this process is, you know, chronic pain management, which we just alluded to. And so it's like having hemophilia, but this other thing on top of it, like you just, you know, with the pharmacies and people labeling you and this and that. I mean, thank you for sharing your story. I think a lot of folks can relate. I mean, I think a lot of hemophilias can relate. Yes. I appreciate you sharing that because and being candid and vulnerable, because this is a topic that you know, a lot of people go through. A lot of people do.
SPEAKER_02:They do. And I know the the the the the factor product people when they want to talk about pain management, you know, they want to talk about, you know, meditation, stretching, and all these other things. But unfortunately, the thing that just cuts right through the pain is is this one thing, and there's nothing else. I mean, obviously there is options, but you know, when you have a really bad bleed, stretching isn't really gonna help you. And if uh it could be prevented to someone else where I could tell them, not just as a neophiliac, but like as as a potential addiction to try to prevent that also, I feel it's something maybe in the community we could talk about. It doesn't have to be like as honest as maybe I am, where I'm just like, yeah, I'd steal pills, you know. I'd steal pills for my pain. Or for example, I've had family members that have told me, like, I would give you my pills. Like they would tell me, I'll give you my pills. I don't care. These are the pills, I'll give them to you. And where I've just been like, uh, it's been a little bit weird. Some of them I did accept during that three-year gap when I didn't have anything. And looking back, it just feels so like, ugh, I felt so dirty. I felt so like well.
SPEAKER_04:I'm happy you're in a better spot now, and you're working with your uh physician and you're able to get your regiment, and you guys have an agreement, and uh, I think that's good. I mean, the fact that you're out of pain is key. So I mean, uh, yeah, I we really do appreciate you sharing, and yeah, this is these are these candid things that a lot of people feel like still through.
SPEAKER_03:Yeah, I mean, this was your opportunity to to share your story, Raul. But I want to say, like, um, I've been there, I've gone through that, I've felt those feelings. So I just want to thank you personally for sharing that. Um, like I said, this is your opportunity to share your story, but don't feel like you're alone. Don't feel like this is, you know, yeah, I I think you know you're not alone. But um, but yeah, thank you so much for your honesty. Uh, your story was raw, it's human, it's real, and it's gonna hit home for a lot of people listening now. So to everyone tuning in, if you've ever felt misunderstood, unseen, or afraid of change, I hope this conversation reminds you that strength isn't about pretending that everything's okay, it's about facing your truth day after day with courage. This is what the Hemo Life Podcast is all about changing the way you think about living with a chronic disorder and reminding each other that we're more than our diagnosis. So if this episode moved you guys, share it with someone in the community, follow us on Instagram at Hemo Life Podcast and be a part of this mission. Thank you, Raul, so much, man. And um, let's uh let's stay let's stay connected.
SPEAKER_01:No, thank you. Thank you, Munch. It's such a pleasure to finally meet you.
SPEAKER_03:Yeah, you as well. Thank you, Raul. Thank you. Thank you, Dr.
SPEAKER_00:Joseph.
SPEAKER_03:No problem.
SPEAKER_00:See you guys. Thank you for tuning in to the Hemo Life 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 the group of extraordinary achievements advisors. On behalf of LA Gio and the entire Emo Lifestyle, keep pushing forward, subscribe for Exxon, and remember you are the architect of your own desktop. Until next time, stay strong, stay as five, and continue on your path to LE life.