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Episode 79: Brandon Hudgins - GPA
16 Plays2 days ago
Brandon shares a deeply personal and grounded account of living with granulomatosis with polyangiitis (GPA), a rare and potentially life-threatening autoimmune vasculitis. Brandon walks us through his diagnosis as a young Division I athlete, the long road to remission, and the physical and emotional toll of repeated relapses, impacting his lungs, kidneys, and identity as a runner.
Beyond the medical realities, this conversation gently explores grief, mental health, and the quiet isolation that often accompanies rare disease, especially in a sport environment when there is a pressure – external or self-inflicted – to “push through”. Brandon reflects on learning to listen to his body, manage stress, and redefine success away from constant striving.
The episode also highlights the power of community, advocacy, and shared stories through Brandon’s work with the Vasculitis Foundation, a reminder that inspiration doesn’t always come from extraordinary achievements; sometimes it comes from showing up, telling the truth, and helping others feel less alone.
The song that Brandon chose is Father’s Son by Steven Wilson Jr.
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Transcript
Introduction and Guest Overview
00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to on One Condition, podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Brandon Hudgens and we're going to talk about granulomatosis with polyangiitis, also known as GPA.
00:00:18
Speaker
Hi Brandon, how are you doing? I'm hanging in there. It's been a crazy month, but you know were we're here and excited for the new year to kind of hopefully put some of 2025 behind us and have have a little bit better year.
00:00:31
Speaker
Yes. i Well, I wish you that. Same for me, actually. Yeah. I love starting with a
Personal Reflections on Family and Health
00:00:38
Speaker
song. So which song did you choose and why? I chose the song by an American folk and country artist by the name of ah Stephen Wilson Jr.,
00:00:48
Speaker
he's ah He's newer. He's a middle-aged guy. he's not a He's not a young buck, but he's new to, i think, to fame and kind of making it in a little bit into the mainstream. He released an album...
00:01:01
Speaker
I think in 2023 or 2024, that was with a song on it that kind of, with where I was at in my life, just kind of really, really kind of hit home for me at a time that I was, you know, it's there's a song about his dad who passed away, I think seven or eight years ago now. And it hit me where, um you know, my my father's not in in great health and I'm sort of watching him him slip away with with with some dementia. And so,
00:01:30
Speaker
you know, physically wise, he's all right, but you're, you're, you're mentally like kind of, you know, losing the person that, you know, has been sort of a guiding influence in most of your life and somebody that you've relied a lot on. And at various stages, kind of, you know, very much when I was younger, very like rebelled against and didn't want to be anything like him. And now I've In my late 30s, I've recognized how much I am like him and how much he's given me and the things that I've learned from him, i'm so grateful for. And he's the things that he's gifted me have allowed me to live a life that I very much enjoy. And I get to to do work that I'm very passionate about. And because I was able, he was he was ah he was a high school track and cross country coach and teacher and
00:02:19
Speaker
He was, he's very, very good. And I absorbed a lot of things without recognizing that. And the song sort of, Stephen's named after his dad. I'm not named after my dad, but, you know, Stephen talks about embracing being a junior and and sort of the same things of trying not to be a lot like him and then, you know, recognizing how much he was. So, you know, there's this line, I am my father's son. And i i very much feel that I am my father's son and i couldn't be more grateful for that.
00:02:46
Speaker
Nice. That's very nice. It's interesting because you you talk about rebelling a bit against what your father, I guess, represented. And you have to do that. There's an age where you have to do that, i guess.
00:03:01
Speaker
But then you always go back to your roots, imagine. So yeah. Yeah. And sorry to hear about your dad. It's difficult.
Understanding Granulomatosis with Polyangiitis (GPA)
00:03:10
Speaker
So we're talking about GPA. Before we we talked, I had no idea what it is. So would you be able to share in a nutshell what it is, how it impacts you and your body? Yeah. So granulomatosis with polyangiitis is a form of vasculitis.
00:03:29
Speaker
Officially, there's 21 different types of vasculitises. If you're familiar with any medical terminology at all, vasculitis, you know, vascular, meaning the vascular system. The different types of vasculitis are depending on what blood vessels are are affected. So with it being autoimmune condition, that means you've got a hyperactive immune system for vasculitis patients most of the the time.
00:03:54
Speaker
For most of them, that means hyperactive B cells. for So there's there's two types of white cells for your immune system, B cells and T cells. I joke that the T cells are kind of the more famous one because of HIV and everything that people tend to remember more, but your B cells are actually super important, like if you've ever had a vaccine or ever gotten sick and or gotten the flu. and You know, the B cells are really important. they're They're kind of the memory of the of the of the immune system. And the B cells are hyperactive for me. And what that with granulomatous polyangiitis, that is...
00:04:32
Speaker
My medium and small blood vessels were affected, specifically for us, our subset that they mainly attack the ENT tract, ear, nose, throat, lungs, kidney, and then it can be fatal um if it gets into your heart.
00:04:47
Speaker
ah the So the granulomatosis, so the capillary beds, if you're familiar with, How oxygen is exchanged in any tissue, the capillary beds, the the blood vessels get inflamed, those capillaries form granulomas. So they basically, those capillary beds not up, that destroys the tissues. So whether that's your your sinus tissue, in your lungs, like you you end up with.
00:05:11
Speaker
you know, that destroys some of the alveolar sacs and stuff. If I were to get a chest x-ray right now, you can still see some of the scarring from some of the granulomas that form. Some of them heal, some of them don't. Luckily, in the lungs, they're very, your lungs are very resilient and, you know, you can kind of work around a lot of that. But when that happens in your kidneys, it can get very, very dangerous. I've had kidney involvement multiple times.
00:05:32
Speaker
When that happens, you stop, you know, your kidneys are processed, you know, your blood and help, you know, get rid of waste. And so if you can't get rid of some of those waste products, it gets very dangerous very quickly. um So the the kidneys and the heart are the two more dangerous parts of it. The sinus ear stuff, you know, for me, it all started kind of in the sinus and an ear track and with breathing problems.
00:05:55
Speaker
And so like I was getting the world's nastiest boogers out of your face that are much bigger than the size of like ah a quarter or a whole dollar coin here in the US. I was having to go and get them literally sucked out of my head. um But you get basically the world's worst sinus infection that won't go away because those granulomas are forming and it's literally just destroying the the tissue inside your nose. In fact, one of the ENTs I was at, least like he compared it to like what the inside of like a chronic cocaine user's nose looks like. Yeah, they they thought when i when I first started going to the doctor, they were like, what drugs are you on? i'm like, none. i was
00:06:27
Speaker
I'm a college athlete. I'm not doing any of that stuff. you know Quickly, they learned that that was not what I was doing. But yeah, so when it affects the ears, that often means hearing damage. Some people have had eye involvement as well. I i wear glasses now, but that's, I think, just hereditary in older age. Yeah.
00:06:46
Speaker
But yeah, those are the the systems that GPA can affect. The difference, some of the other ones can get much more dangerous quickly, you know, for us, ours. Most patients are able to achieve remission with GPA until the late 1980s.
00:07:00
Speaker
GPA specifically had a death rate of over 90% one year after diagnosis because they couldn't figure out how to slow it down. um And then a team of doctors at the and NIH here in the United States were able to figure out a treatment method to put it into remission. And the treatment methods have changed since the late 90s. But what they did at the time was corticosteroids like prednisone paired with a long-term chemotherapy drug. Mm-hmm. that you took daily for six to eight months. And so what they basically did was read that that reset your immune system was the way that they put that into into remission. Then now they have a bunch of other tools at their disposal that are far less toxic. They sometimes still kind of have to use the big guns like that, but less and less. And certainly the earlier they catch things, one of the biggest problems with vasculitis is, is It's systemic, so it affects a bunch of things. And if you're going in with, you know, basically a sinus infection or breathing problems, like you're seeing all these different doctors and nobody's really kind of putting the the puzzle together, because until it gets dangerous, you're kind of just dealing with a bunch of things that are...
00:08:07
Speaker
very annoying and keep people very sick, but it's not enough sometimes to often get a diagnosis. And most patients most patients go somewhere between six months to a year before they can get diagnosed from the initial onset of serious serious symptoms.
00:08:24
Speaker
For myself, that was that was the case as well. I was in that roughly from the first time that stuff was like really becoming problematic to when I got diagnosed was about six months. So it's tough with the way that the medical system is kind of divided up. It certainly has some wonderful things and hopefully with newer tools like AI and stuff that can kind of decrease some of those times to diagnosis. Help patients, because the earlier they get treated, the better outcomes they have.
00:08:53
Speaker
Yeah, yeah. Because over 50% of patients experience relapses
Managing GPA: Challenges and Strategies
00:08:57
Speaker
as well. so Yeah, I was about to ask, it it sounds like it's something that, at least for you, has come and gone.
00:09:05
Speaker
Is it how it happens? like Does it get worse, then better, then worse? Yeah. Yeah, the the kind of common understanding of this disease is there's some sort of environmental trigger for people. And that environmental trigger can be ah bacteria, a virus, a fungus.
00:09:22
Speaker
For me, I think some of mine sort of stress related and wearing myself down. And Whatever that trigger is for people, it causes their immune system to become hyperactive. And for me, you know, I was diagnosed in 2008 at the age of 20 years 21 years old. I've three relapses with it from between 2008 and 2018.
00:09:42
Speaker
and i've i've had three relapses with it from between two thousand and eight and two thousand and eighteen Until recently, i I kind of four years seemed to be my my magic number. I couldn't get past that without experience or relapse. But since my last bout in 2018, I have and I was declared in remission in 2019. So actually, October, and November would have been six years for me in remission. So that's, you know, something to certainly celebrate.
00:10:10
Speaker
Yeah. Yeah. So you mentioned that it seems to be linked you wearing yourself down. How, like, how do you know that's the case?
00:10:21
Speaker
um I, when I look back, and And I struggle from some mental health stuff as well. I've had, you know, anxiety and panic attack problems and dealt with some situational depression from from being chronically sick for long periods of time um and dealing with all of the things that come with being, and the isolating parts of having a rare disease, especially when you get diagnosed in in your college years when most people are kind of having the time of their life and carefree, you know, you're...
00:10:50
Speaker
you're stuck living in a, you know, a very, very different world, kind of isolated from other people. Family-wise, too, I was probably predisposed to some of that. But when I look back on it, I had a lot of problems when I was sort of white-knuckling life and just really, really bearing down, really unhappy, really trying super hard to make things happen. um I was also a college athlete and then later on a professional distance runner. And that that life is is was very hard for me. was something I wanted really bad. And especially the more things that kind of happened, the harder I tried to make things happen and sort of will
00:11:26
Speaker
Will myself too. and through that, you know, you just kind of, I think, end up exhausting yourself and not paying attention to certain things that, you know, you need to be health-wise. So I've, you know, I've worked a lot on, you know, I've I started seeing therapists back in 2013 after my first set of panic attacks. And, you know, I've been in and out of therapy over the years and it's been very, very helpful for me, and which is, I think, one of the things that I've... I've learned a lot in my 30s after kind of the last...
00:11:59
Speaker
my last bout with it that you know some things needed to change in my in my mind and that's i think one of the things that's helped me and you know it's it's not the only thing right and certainly any time that and i'm just kind of on the back of one of the most stressful years of my adult life professionally and you know you're kind of looking at some of those old patterns of behavior showing up and you're like Am i you know, I've luckily kind of been like, all right, I need to make sure that we don't end up down one of these roads for my own health. And anytime, you know, because it all starts with the ENT stuff, anytime you kind of get a cold, you're kind of like, is this the one that's going to...
00:12:38
Speaker
show up and not go away again because that's that's happened multiple times. So i do I do make sure that like, you know, i I run things pretty hard being a small business owner. and But I do try to make sure i so I still get my sleep. I try to eat really, you know, i don't always i don't always do it, but at least, you know, at least five or six days a week, I'm trying to make sure that I...
00:12:57
Speaker
that I eat healthy and take care of myself and get get plenty ah get plenty of sleep. Because, you know, those are the things I feel like for me can be, can lead to those things that, you know, if you get sick and run down and kind of just keep plowing through it and you do that long enough, there's going to be some sort of ramification. Yeah. Yeah.
Impact on Athletic Career
00:13:16
Speaker
And has it had any impact on your ability to run? I did, for sure. So like when I was first diagnosed, it i was I was a Division I college athlete here in the U.S. And I had had a modicum of success in all conference. And actually, i think I'd won a conference title too. on My first two years of college and going into my junior year, i think there was some high expectations. And and That's when I started literally the fall of 2007. I just started having problems where like I couldn't breathe at practice. And you know I was one of the best guys in the conference in the and the Southeast region. And I was finding myself literally behind the women's team at practice. Yeah.
00:13:59
Speaker
Which is not not that we didn't have some like some great women and female athletes, but like you know that's certainly I was performing you know over 8K and 10K that fall.
00:14:12
Speaker
Minutes worse than what was expected. And you know that's when I first started seeing some pulmonologists and everything. And you know they were basically like, well, you got asthma, but like the inhalers weren't working. And then ultimately later that fall, i got I got sick. And then there was a spell there after, you know, sometime late winter of 2007 to early 2008.
00:14:35
Speaker
You know, with it being an inflammation disease and attacking those capillary beds, it makes running very, very difficult. It basically robs your your ability to exchange oxygen also in the muscle tissue. And so running was... If anybody's ever run a middle distance race, like a 400 and 800 or a mile, I equated any sort of aerobic activity to feeling like the last 100 meters of a race where everything just ties up.
00:15:01
Speaker
Yeah. Yeah. was Yeah. So it was brutal. Mm-hmm. so once, you know, once the the medications, which, you know, some of them are like prednisone and stuff are really heavy heavy anti-inflammatories so that that, you know, over time things would kind of open back up. But each each bout that I had with it, it would take me kind of over two years to get back to where i had been had been previously. Two years as well.
00:15:26
Speaker
Yeah. And during those two years, were you able to run at all or did you have to go right back to no activity? to Twice I had to, I mean, I would always try to do something because also, yeah you know, I'm pretty, i like to be able to move my body and understanding that, especially some of the medications like prednisone can rob your, especially when you have to be on it long term. you know i I had read and knew that it you know had effects on bone density and everything. So I would still try to go to the gym and always kind of try to do something. that I'd try to find something, whether it was walking or yoga or yeah going to the gym and lifting some weights. like I would try to do something kind of no matter.
00:16:07
Speaker
you know i wouldn't go hard, but there was two two of those four bouts with it where I had to literally... run for like when I would finally get back to it, you know, you were talking about running for 20 or 30 seconds at a time to start with again, you know, not able to even go do a mile, a full mile or anything like that. So two of those times, yeah, it was full on have to build back from square zero. ah two of the other times I didn't have like the the kidney involvement and it's quite as heavy of medication. So I was still able to be a little bit more active and
00:16:41
Speaker
ja I certainly wasn't able to do any training, but you know it would still take about a year and a half or two years each time before I was back to the level that I would had been at previously. Yeah.
00:16:55
Speaker
And so now you said that you're in remission. Is that due to the treatment you're on? Are you having a like treatment that's ongoing?
00:17:06
Speaker
I don't currently. No. then there's And different doctors and different patients handle things differently. One of the more recent developments in medication are like a lot of the biologics. And there's a drug called rituximab that ah they take. It was actually, technique I think it was developed for lymphomas.
00:17:24
Speaker
And then they recognize that it... had an effect on the B cells that was helpful to some autoimmune patients, especially rheumatoid patients.
00:17:35
Speaker
ah So like most of a lot of my time as a patient, I had a rheumatologist. He was sort of the the head coach of my team of doctors that would include anywhere from, you know, four to eight, kind of depending what all was going on, that would be part of a team of care patients.
00:17:51
Speaker
and dealing with all the different systems and managing the symptoms and the damages in those tissues. But since 2013, that biologic drug, rituximab, has been approved for vasculitis patients.
00:18:05
Speaker
Okay. I've i've had varying amounts of that, and they've been working on different, some patients, and also like a lot of it's doctor-specific and patient-specific.
00:18:17
Speaker
My doctors trust me too to like come in if things start to go wrong because they know I know my body really well. Others have chose to like, well, they'll get it every six months or once a year.
00:18:27
Speaker
They'll just kind of go in and get that because it'll kill it'll kill most of your B cells and for some patients just killing them and keeping them suppressed seems to work. I was so sick in 2017 and 18, they gave me ah more than 20 doses of it in those two years.
00:18:44
Speaker
And my kidney doctor who actually helped develop one of the tests that diagnosed this disease, he happens to be about 90 minutes from where I live now. So he's been in vasculitis treatment for over 40 years now. And just pray anytime he doesn't retire.
00:19:00
Speaker
You know, I know he needs to probably, but, you know, I've already, my rheumatologist has saved my life the first time. He's already retired. So, you know, trying to find new doctors is always stressful. And, you know, especially when you've been in the trenches with them. But he, the last time, was like, all right, we've given you a lot of these, a lot of these medications, you know, over,
00:19:20
Speaker
The last couple of years, like, I don't want to just kind of keep hitting you with all this toxic stuff. Like, let's kind of just wait and see. So, you know, for for the first year it was, or two years, it was, you know, more regular blood work. Now it's just blood work once every, you know, six or eight months to to make sure things things are okay.
00:19:39
Speaker
So right now we've we've settled on that and hopefully I don't need anything else or anything more. So now essentially you're managing by trying not to have too much stress.
00:19:53
Speaker
Yeah. Yes. Which is difficult with life. Yeah. Uh, and, and, uh, you mentioned diet and so on and light exercise as well. I imagine.
00:20:05
Speaker
Yeah. I don't, yeah you know, I, I, I was still chasing the, the Olympic dream up until 2021, um, into my early thirties and, Since then, I've done varying amounts of running and stuff, but i try to i try to exercise for at least 30 minutes a day, at least five or six days a week now. Which is ironic because i you know I work as a coach and I'm around running and strength training literally 12 14 hours a day and you know, i'm I'm trying to some days just squeeze in 20 or 30 minutes of it for myself. You know, that's kind of one of the things I'm working on in the the new year is being more diligent about scheduling that time out for myself personally. Because it is, I do and I've always, like, i was an active kid. I loved playing all of the sports. I mean, was the one that I ended up settling on. But, you know, I grew up playing soccer and football and basketball, and I love to play and move my body. And,
00:20:57
Speaker
i I still enjoy that, so i I want to be able to do that and and do that long term because I know health-wise, like, you know, we talk a lot about here, like people come to us kind of sometimes often for performance goals, but we talk about training for life and being fit and and being healthy for for the rest of life so that, you know, you can keep that quality of life up and keep as much quality in the years that we have here, however many they they are, you know? Yeah, yeah.
00:21:22
Speaker
Sound advice. So you're also heavily involved with the Vasculitis Foundation. Can you tell us a bit more about that?
Advocacy and Awareness Efforts
00:21:32
Speaker
Yeah. So in 2000, ah that sort of alluded earlier to kind of like suffering and silence for for years from 2007, 2008, when I first started experiencing some issues with with my health all the way up through 2015, didn't talk about it much.
00:21:51
Speaker
It's not that I was of afraid to talk about it, but i didn't talk about it. um If people asked me pointed questions about it, i would certainly share. And I'm a very open book about things, but it wasn't something that I really talked a ton about.
00:22:08
Speaker
And I finally realized kind of around that time that that was a problem. And I wanted to do some stuff for our community because I also felt kind of very underrepresented as, you know, as an autoimmune patient, you know, especially when you start telling people you've had chemotherapy, like, oh, do you have cancer? And you're like, no, i don't have cancer. Not that cancer is not dangerous to anybody, you sort of kind of like almost find yourself getting mad at cancer patients, which is just a whole other thing. But, you know, because they get all the limelight and the research dollars and everything else. But yeah,
00:22:40
Speaker
In 2015, broke four minutes in the mile and there was an article in Runner's World about me. And that's, I had been reaching out to some foundations and stuff to try to kind of get involved and didn't really know what that looked like. But after that Runner's World article, Vasculitis Foundation reached out to me. And in 2016, when I was training for the Olympic trials,
00:22:59
Speaker
We started a campaign called the Victory Over Vasculitis Campaign. And, you know, I shared a lot about my journey and the things that had gone on and got the opportunity to speak in a couple of different things and help use my platform as an athlete to...
00:23:14
Speaker
raise awareness for our disease and stuff. And and also to then inspire other patients to not let this kind of stop you. And it's going to be hard. And especially once I got to know other patients and everything, and you know, i've I've lost some friends to this, this disease and and these family diseases. And so sometimes there's, Sometimes there's not hope that things are going to get better, but it's, you know, kind of as alluded earlier, is making the best of what what time you have and trying to live a life that is still meaningful. And that's sort of what the inspiration behind that campaign was. And then as I got more and more involved, it actually... It gave me some really, really close friends.
00:23:54
Speaker
There's people that i can call at 3 o'clock in the morning and talk to about this stuff that it's not gonna like ruin their day because it might be a really heavy topic. You know? Yeah. I was able to meet a couple of other young patients that had gotten diagnosed in their teens or twenty s that were all, you know we were all about three or four years apart in a age.
00:24:14
Speaker
meet all these people and then get inspired by them. Because one of the things I talk a lot about is like, I kind of, especially when you're young and you're an athlete, you have a bit of an ego. and I kind of wanted to be the flag, flag waiver for us.
00:24:27
Speaker
And then I was, I specifically remember being at one of the international symposiums for the Vasculitis Foundation after about a year, a year and a half of dealing with this. And I was talking to a mother, a single mother of two that was also taking care of her mom.
00:24:42
Speaker
I had written a book kind of about a little bit about my journey at the time. And she was talking to me about how it had helped. You know, she was a vasculitis patient and how like hearing my story had helped her. And she's a single mother of two working two jobs to pay the bills and taking care of her mother and two kids. And she's telling me how me running in circles is is inspiring. And I was just, I just remember just being kind of floored. Mm-hmm.
00:25:11
Speaker
Because those are the things that like that you know you you look up and you're like, I mean, it's and incredible and I'm glad I can provide some some inspiration for her, but those are the stories that you hear and you're like, I mean, that's the story that should be told. Like, I'm doing something very, very selfish, running in circles, chasing a childhood dream that I've had since I was 10 or 12 years old.
00:25:33
Speaker
And it's something that's so fleeting and so trivial. It's not, you know... It's not that. So the fact that what I was doing was having that kind of impact on on other people. like those you know Those last few years as an athlete where I was representing the Vasculitis Foundation, because they were also one of my sponsors too, which allowed me to keep chasing my dream because there's not a lot of money in our sport. And there was a lot of purpose behind what I was doing. And that that was one of the more fulfilling things because you kind of you kind of do it to kind of like...
00:26:02
Speaker
Well, you're like, yeah, I'm going to be the guy. But then you're like, oh, man, I'm not the guy. All of these people are really the guy. It's my job to help tell their story. And so over the last, actually over the last couple of years, the Vasculitis Foundation has actually been able to get some funding and stuff. And it's no longer just like an awareness campaign. The Victory Over Vasculitis is actually like a full-fledged program. So if you go to the...
00:26:23
Speaker
Vasculitis' website, there's resources for patients to help them take care of their, I get to use my degree now with them, like we designed some exercise programs for them. There's mental health resources, there's resources to help patients navigate the healthcare system here in America, which is an absolute nightmare.
00:26:40
Speaker
And there's a patient advocacy thing to help you learn how to talk to doctors as well. And it is a full-on program to actually help patients once they get diagnosed, can help them find that. There's resources with the Vasculitis Foundation now that helps people connect with doctors and get doctors that are, because, you know, so often too, if you're in a rural area, you know, my the first doctor that I had, he was considered an expert in the area and he dealt with five cases of it.
00:27:07
Speaker
you know, it's it's connecting patients with with those resources and that has quality of life outcome changes, which is, you know, it's it's great to inspire people and tell stories and everything else, but when you can actually impact people's quality of life, that's far more, far more meaningful. And there's other people doing it now. We had a whole whole team of people that there's five or six people that are part of that program that go to the different symposiums and stuff every year and connect with patients. And a lot of times now too, like the internet's helped and social media has helped with so much of that of
00:27:40
Speaker
people being able to get connected really quickly. And so oftentimes you're talking to somebody in their first couple of weeks or first month or two of of them getting diagnosed, whereas like so many of us were so late to the game of of getting connected to those resources.
00:27:55
Speaker
Yeah, it's amazing because a lot of the times you either have the practical stuff or you have the the inspirational stuff. But being able to provide both because people, usually you'll get to the practical stuff by hearing about it, by hearing someone and then you keep searching those people and you finally find, okay, that's that's that's where I need to look further. So that's very good.
00:28:22
Speaker
Yeah, I think it's so amazing that the internet changed so much since I first got diagnosed because I remember. So when I got diagnosed, I was i was actually ironically out at a track meet watching my younger sister who was in middle school at the time compete.
00:28:34
Speaker
And this is on an old flip phone. And, you know, it was after six o'clock. And I was getting a call from my doctor's office. Which back in the, we're all so used to everything being connected now, but like when your doctor's office was calling after hours back in the day, it was not good.
00:28:50
Speaker
yeah um You weren't getting a text message to remind you of your appointment the next day, you know? So I saw it was the doctor calling and i answered it. i remember, i still remember where i was sitting at in the bleachers at this, at this middle school. back home. And it wasn't one of my doctors. It was two of my doctors who had been working together. And they were one was a pulmonologist and one was an ENT. And they they knew each other a little bit and they they weren't in the same office or anything or in the same practice. They both had their own little practices and stuff. But they had been kind of working on my case together and they had gotten together to call me.
00:29:26
Speaker
And they're kind of like, are you sitting down? And i'm like, yeah. And they're like, you know, we've been running a bunch of tests on you. We figured out what's going on. And this is what you have. We've contacted a rheumatologist for you that has had the most experience with this case down at the Medical University of South Carolina.
00:29:46
Speaker
You know, we can't treat this. It's serious. And we don't know what stuff's going to look like, but, you know, we have to pass off your care to to him. And so they, you know, they they told me about the, you know, the name of the disease and everything. But like, i just kind of had to sit with that information for the next couple of hours and stuff. And my parents were at meet. I kind of told them i went home to the house I was living at the time there in college and pulled up my desktop and literally just, you Googled it and the first thing that came up was a Wikipedia page that was just the stats on it, which were very outdated and very alarming. And i just kind of remember closing it, but like, and in going through some of those early things on the internet, there was like that and like, I think a Mayo Clinic website, there was nothing I didn i didn't see about, you couldn't really find good information on or good ways to connect. And so,
00:30:40
Speaker
Now, if you if you Google that stuff, it's it's really quick to come up and really quick and you easier for patients to kind of get plugged into that stuff, which I'm super grateful for, for people to have.
Community and Support Systems
00:30:51
Speaker
Yeah, yeah, yeah, definitely. I'd like to go back to one thing that you mentioned. You didn't intend to talk about yourself, but then starting to talk actually helped you.
00:31:04
Speaker
There are plenty of men, especially, I'm sure, who are in that situation, who feel like they need to, but they don't take that step. Do you have any advice?
00:31:15
Speaker
Who do you talk to? everybody's different. And I've talked with a lot of spouses or parents, especially if kids that have gotten diagnosed, you know, they don't want to talk about it. What do I do?
00:31:26
Speaker
yeah And I'm like, they got to come to it at their own, at their own, in their own time. But it's, it's finding, it's finding places and people for them to feel safe to do that.
00:31:39
Speaker
And I've always found, I mean, it's, You know, it's even sort of what a lot of what we do with our running group here in our community of when you put people together that have been through similar things or experiencing similar stuff or at similar stages of life, those things sort of happen on their own.
00:31:58
Speaker
Yeah. And it's it's it's finding ways to sort of manifest that. And so if if it is somebody that's not wanting to talk about it, even if it's somebody that's like going through this rare disease, but, you know, connecting with somebody that's been through cancer, that's you know,
00:32:15
Speaker
there's a lot of overlap with a lot of these rare disease things. And so finding those sort of ways to to make those connections and putting those people together and just giving them the space to do that and not forcing it In fact, one of the things we talk a lot about you know, as as patients with some of the the international symposiums and stuff we've been to is like, there's all these wonderful sessions with doctors and therapists and all these things to help. But like, you end up having these wonderful 10 minute conversations in the lobby between stuff with other patients. And there's almost not enough time of that.
00:32:51
Speaker
You know, they might have a dinner or set up like lunches and, you know, they'll kind of try to curate some of that. But you almost need a whole day of that. Certainly after, you know, you go to a bunch of them and you start seeing the same people and have connected with them online and everything like, you know, you develop a little bit more of a relationship. But putting people in the same rooms together that have been through similar things and like letting that, not not forcing it.
00:33:17
Speaker
yeah You know, that's that's the thing that i've I have found with everything is as the best way to do it. Because even even if they don't talk about it, there's just sometimes that shared understanding and shared experiences that give people kind of comfort of knowing that other people have been through what they've been through. I mean, yeah you know, we were talking earlier in the thing about like my dad dealing with dementia and like the number of of people in my life that have had people close to them go through that, that have shared their stories and experiences with it. Like, it doesn't solve my dad's problems, but it it it doesn't make you feel so isolated. Like, I'm the only person that's going through this.
00:33:55
Speaker
And it makes that, it's, you know, I, somebody, and i've I've told a lot of our people about this, because they're like, I know it's got to be so difficult. i'm like, it is, but like, I've suffered in silence and suffered by myself.
00:34:07
Speaker
And I have a wonderful community of people that have been so supportive and so helpful and so kind to share the things that they've gone through and just listen to me talk and listen to me kind of complain about things and stuff that's going on and sharing. And that that that makes those those difficult things a little bit easier and a little bit more you know manageable, stressful to be able to share those experiences. And that's that's sort of the magic of ah of having people around that have been through similar things.
00:34:37
Speaker
Yep, I agree. Humans, we have a saying here at HPAC, humans inspire other humans. And when you put people together that are doing similar things, it's magic happens.
Finding Fulfillment and Community
00:34:49
Speaker
It's what gave us everything from the Beatles to, you know, your your best friend and your, you know, whoever you choose to spend your life with. So, you know, putting humans together and inspiring each other, you know, being around each other is is is inspiring.
00:35:03
Speaker
Yeah. yeah Well, I have one last question for you. What's your happy place? Place where you feel at peace? Well, that's a great question.
00:35:16
Speaker
that's And that's certainly something that changed a lot. If you'd asked me this question a couple of years ago, would have been something very, very different. But right now, my my happy place is this facility that we've built this year because I've put so much of my own blood, sweat, tears, and and money into the the facility that we've been able to build here for athletes. And it's filled most days with people that i love and care about a lot. And it was a total group effort. It was something, you know, we we hired two outside people to do some plumbing and electricity work. and outside of that it was
00:35:52
Speaker
a total community effort to get this, you know, 1300 square foot facility built this year. um And most days there's people in here from seven or 8 a.m. m all the way up until seven or 8 p.m. And they're all people that I love and care about. It makes getting work done sometimes really, really difficult, but it makes life a lot ah lot of fun. You know, it's it's certainly been my my happy place recently. And, you know, from the conversations i was having at home with my partner and because she's the one that, I joke, she's the one that owns all the power tools in our relationship. You know, so she's certainly responsible. Like the the wall that's behind this camera wass was built by her.
00:36:31
Speaker
um With me kind of just holding things and from from all of that stuff to, you know, to the the painting and everything else that our that ah that our group chipped in to do, man, it's just, it's been one of the more gratifying things that we've been able to accomplish. And it was hard and it was stressful and it was a lot of really long days, but...
00:36:50
Speaker
It's been one of the more rewarding experiences i buy of my life, for sure. Well, that's a first, but I get it. It's amazing. Building something with your own hands is always rewarding.
00:37:03
Speaker
Well, thank you so much, Brandon. I had a picture in my head listening to you talk. I feel like there's an an army behind you of people you can rely on. like It feels like you're in the middle of...
00:37:17
Speaker
multiple communities. And that's amazing. I love that. It is. you know, as I said, it's what's, you know, we've talked a lot of kind of about the mental health thing and my own and how that's sort of tied to my own health and everything. And that's been the the biggest change because, you know, especially as when I was a yugggie young punk kid kind of rebelling against his dad and doing a sport that was is not mainstream here in the US and being a skinny kind of picked on young kid that kind of kind of had his middle finger up in the air and a lot of people, you know, to chasing a dream that becomes isolating because of the, you know, when you're training really hard and you know, you're running 80 or 90 miles a week and having to work a job to support yourself.
00:38:03
Speaker
It's an isolating thing. And to now be on the other side of all of that and have the communities, and or I even kind of hate the community word, but village, you know, the villages of people that all have their, their, their parts and, and are supportive of each other and not just me, but of, of each other.
00:38:22
Speaker
it it makes life just so much, so much, not, and not just happier because it's, you know, there's times where things are really hard, but it's just so much more meaningful. I'm glad that came across that way because it's certainly something that I'm very appreciative of. And one of the reasons why I work really hard is because i these villages have given me given me everything.
00:38:44
Speaker
Thank you so much. And yeah, I wish you all the best for the year to come. Thank you so much.