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Patient Story: Parker Lyons
58 Plays3 years ago
Season 2, Episode 12: Parker Lyons is a senior financial analyst at Twitter in San Diego, California. In December 2021, Parker was hospitalized for two months at the Mayo Clinic in Rochester, Minnesota due to complications stemming from ulcerative colitis. Listen to Parker discuss his near-death experiences, the healing power of relationships and the brokenness in our healthcare system.
A written account of Parker's health journey:
Part 1: https://medium.com/p/f06e0501a1c6
Part 2: https://medium.com/@parkerhlyons13/im-freaking-alive-an-update-bet-the-under-94d6200fb902
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Transcript
Welcome to The Wound Dresser Podcast
00:00:09
Speaker
You're listening to The Wound Dresser, a podcast that uncovers the human side of healthcare. I'm your host, Jon Neary.
Introduction to Parker Lyons
00:00:20
Speaker
Today, my guest is Parker Lyons. Parker lives in San Diego and works as a senior financial analyst at Twitter.
Parker's Health Crisis and Hospitalization
00:00:28
Speaker
In December 2021, Parker was hospitalized at Mayo Clinic in Rochester, Minnesota due to some severe complications stemming from ulcerative colitis.
00:00:38
Speaker
After over two months of transfusions, surgery, biopsies, blood tests, IV placements, and near-death experiences, Parker beat the odds and survived through an array of medical challenges, a journey that he documented on medium.com, which of the links for that will be in the show notes. Today, he continues his miraculous recovery, which has inspired family, friends, and medical professionals to never doubt the resilience of the human spirit.
Personal Connection with Parker
00:01:06
Speaker
I guess I should also mention that Parker and I are old buddies from Montgomery, New Jersey, so childhood friends. So always, always enjoy catching up. So Parker, welcome to the show. Thank you so much, John. Yeah, such a privilege. I think, again, what a terrible excuse to catch up. But I think it's been long overdue. So it's awesome to see your smile and to just reminisce a bit about golfing around New Jersey a bunch. But yeah, it's great to be here.
00:01:36
Speaker
Just really excited to share my story however I can, but also just catch up with it.
Health Decline in 2021
00:01:43
Speaker
Yeah, so your medical situation was very complex when you were hospitalized. Can you briefly describe your medical journey from your initial ER visit in Las Vegas all the way through to some of your rehabbing? Yeah, for sure. I'll try to keep it remotely short, but it's a bit of a blur. But yeah, I guess probably
00:02:05
Speaker
better starting place is heading into 2021. Um, I was honestly in the best shape of my life and extremely strong and running half marathons on weeknights for the hell of it. You know, just really kind of in, in great physical and mental shape and job was going well and every, everything was running smoothly. Um, like you mentioned, I struggled with ulcerative colitis for a while, um, since high school, but have been on remission, um, with a drug called Humira.
Facing Medical Challenges
00:02:35
Speaker
which is immunosuppressant for probably several years at that point, all of a sudden a combination of a lot of things happened. So I actually hurt my back while I was lifting a bit. And so my level of activity had to go down pretty substantially. Later found out that I also had pneumonia and then got COVID and then just a slew of other things probably within a couple of weeks span. In the same amount of time I dropped from
00:03:04
Speaker
about 180 pounds, probably closer to 150, and just was continuing to feel very, very sick. I think with a bunch of things like colonoscopies and endoscopies and all of these different things kind of led to the obvious answer, which was my colon was extremely inflamed and I was going through a pretty severe flare up. So kind of the onslaught of
00:03:32
Speaker
medications like prednisone and some other steroids were kind of administered. And what we eventually figured out with some pretty unique testing was that my body just wasn't responding to Humira as it was before. So apparently, you know, that does happen over time. You know, sometimes your body will build resiliency to kind of that itself. And so instead of Humira kind of doing its thing and
00:03:58
Speaker
you know, allowing kind of the inflammation to die down, it was kind of having the reverse effect that it was supposed to. So getting off of that and then just being on steroids for a while, you know, made me very susceptible to infection and a lot of other things that could go wrong. In the meantime, I was trying, you know, to get onto a new amino suppressant, which is Stellara. So prior authorizations
00:04:26
Speaker
all this documentation administrative stuff just to get on this really expensive drug, you know, took weeks. And I remember literally the day before Thanksgiving, before I flew out to just outside Nashville to visit my mom, I finally got my first infusion. So I thought that that was kind of like, you know, all right, I dropped 40 pounds, like I'm really, really sick and colitis symptoms are all over the place. But
00:04:52
Speaker
And I can barely eat, but like this is kind of going to be the turning point. We found kind of a new point to move on, get out of this flare up. And then, you know, I just started feeling a tiny bit better, but not really. I think what's, you know, interesting is that it's really hard to look at stuff like, you know, compared to the day before and a few days before you're, you're probably okay. But, you know, when you really look at it and you're like a month goes by, you're a lot, lot sicker, you know, than you thought you were.
Transfer to Mayo Clinic and Treatment
00:05:21
Speaker
And so, you know, I was probably trying to play a little bit tough, but also, you know, put a lot of trust in the medication and my doctors that were trying to figure it out at the time. And so I actually, you know, right after that was feeling like, you know, this medication is going to make me healthier. I've had this trip planned forever to go to a football game with my buddy and meet him in Las Vegas for, you know, literally just three or four days after the first week of December.
00:05:51
Speaker
Um, ended up making it there. And then by the time I, you know, was trying to make it out of there on the plane, I almost fainted after I checked into the flight and was kind of down the runway heading onto the plane and nearly passed out several times. Um, just standing there after, you know, a couple of tough days, not really being able to eat, not really being able to do anything in Vegas. Um, and so for obvious reasons, they didn't let me fly home. Um, and so instead kind of.
00:06:20
Speaker
hopped on an ambulance and headed straight to Vegas for treatment. I waited in a waiting room in the ER in Vegas for about eight or nine hours. So this is peak COVID. And so even though they were able to administer IVs to me, it was out of the waiting room, which is pretty insane. And then eventually finally got my own room. My parents were called and finally got my buddy on his way back home.
00:06:50
Speaker
But they couldn't really figure out what was going on, but my heart rate was spiking dramatically very often. And so even if I were just to literally just get up out of bed for a second, you know, it would go kind of above like 170. And so all these tests, you know, to check heart, you went by and, you know, that was okay, fortunately, but, you know, then they,
00:07:16
Speaker
I was telling them, I know what this is, I'm going through a really severe flare up, and this is just kind of like the continuation of it. And they eventually convinced me to spend the night there, which fortunately they did. They took some scans and noticed that a couple of my major organs were very enlarged. They realized that, yeah, kind of the heart symptoms were a result of just
00:07:43
Speaker
excessive inflammation kind of throughout the body and not just in my colon. It figured out that I had C. diff colitis. And so they had to kind of treat that as well. And then, you know, kind of more and more as time went on, I was, I was kind of, I wasn't in the ER, but I was definitely heavily monitored for probably two or three weeks there. And just nothing was working. They were throwing extremely powerful kind of antibiotics and things to
00:08:13
Speaker
to treat the C. diff and, you know, slew of doctors, infectious disease, hematology, kind of everyone came in and tried to offer, you know, something. And I think they were just convinced that, you know, once we take care of this, you know, C. diff side, and once you get kind of this still aura and this colitis kind of under control, then you should be good to go. But I was dying. And really, really quickly.
00:08:42
Speaker
getting to a point where that hospital in particular is, even though they were trying really hard, they just weren't really equipped for what needed to happen and the pace that it needed to happen. And so not knowing exactly what was going on in my body, these tests, blood tests and scans and all these things would take days at a time to come back and it just wasn't quick enough. And so we were realizing really quickly and I'm so fortunate to
00:09:10
Speaker
have had my parents there with me in Las Vegas, we realized we needed to make a game time call and then pretty quickly. And fortunately, my dad had been going to Mayo Clinic that's actually based in Jacksonville since it's pretty close to where he lives now. And so he was trying to get me there just because he knew that a very large research hospital could probably be able to handle extremely complicated cases.
00:09:38
Speaker
Every place was just totally booked with COVID patients. And there was just no way that I'd be able to get a transfer. And then days went by and again, I was dying really quickly. And eventually my dad got a very random email through a very loose connection of Mayo Clinic that figured out that they had a bed for me in Rochester, Minnesota.
00:10:07
Speaker
at their main campus and so figuring out kind of within the next probably day or two how to get me there. So I took a medical plane and ended up getting there maybe a day or two before Christmas and then it seemed like I was getting a little better again and then it just, my body went into complete shock a few days after Christmas and they had to perform kind of an emergency procedure that night
00:10:36
Speaker
Um, one that they were not very confident that I'd make it out of. And they, they made me, um, and my parents reasonably aware of that. Um, and so I went to, went to sleep for a little bit. I think I was so weak at that point. You know, I probably weighed 120 pounds and, um, everything was just so blurry kind of mentally that I didn't really comprehend like what was going on. Like if.
00:11:07
Speaker
If death was coming, I just didn't have time to really think about it. But I woke up two days later and had my colon removed, sent some really nice scars from that. But I remember my parents running and crying and a doctor in front of me explaining that they figured it out and basically saying that I'm going to survive, but it's going to be
00:11:37
Speaker
crazy because then him knowing that I'm a statistics guy decided to give me the fact that out of the four cases in medical history that they could point to that was remotely close enough to offer a plan of recovery for me, only two were even remotely applicable to my situation. So in the history of medical records, which I think Mayo Clinic has a pretty good handle of,
00:12:07
Speaker
Yeah, I got two people that fortunately took track enough to offer some form of recommendation to kill this thing. And so what it ended up being, which makes a lot of sense, like so many people, there's just no way they could have caught it at that hospital in Las Vegas or my doctor before in San Francisco. I had histoplasmosis, which is a pretty rare fungal infection.
00:12:35
Speaker
But combined with HOH, which is kind of a blood condition, effectively where my healthy blood cells are getting attacked internally at the same time. And so that's what really was just hammering on my body. So probably 50 plus both blood and platelet transfusions. I remember my platelet count got to two at one point.
00:13:04
Speaker
Um, while I was in the hospital and so pretty much there's no way to stop bleeding at that point. Um, and so, you know, I was told a little later on that they totally emptied out the blood, the blood bank at Mayo for me, um, those, those next couple of days. And then a lot of experimental stuff after that. And so even though I made it out of surgery and they knew what happened, um, you know, they, they still didn't have enough.
00:13:33
Speaker
information on really how to treat it to be positive so they try a lot of things. So I got some really nasty kind of infusions of really heavy antifungals. I went through a couple of treatments of chemo, had some hair loss there and just a slew of things to try to at least get some of my levels trending in the right direction, but not even close to normal, but just like
00:14:03
Speaker
at least showing some promise. You know, it was around that time after just a ton of tests and things like that, that eventually someone was stopping by, kind of scoping me out for the ability to go to inpatient rehab as my next step of recovery.
Post-Surgery Recovery Journey
00:14:22
Speaker
And at this point I hadn't left a bed and in weeks I hadn't taken a shower, I haven't brushed my teeth, I haven't
00:14:29
Speaker
been able to move and at one point even I remember very distinctly that someone that was trying to help with my recovery brought me a three pound weight to just try to curl or do something with it and I couldn't. They had to go back and get me one that was one pound. That was the amount that I could lift with my arm. And so I was too weak to literally do anything and here's this person telling me that
00:14:58
Speaker
you know, there's this potential program for you to have three to four hours of like fitness every day, you know, for two weeks to get you back on track. And I wasn't even sure I was going to survive yet. And so, you know, Mayo just kept pressing man. And it was just one of those things where there is very, very, very little in my control, other than, I guess, my attitude and my perspective and my trust toward those doctors.
00:15:29
Speaker
And at every step of the way, even though I went back and forth between the ER a couple of times and things got worse and things got better, I just knew that there's really only one route here and it's to stay as remotely positive as I possibly can, but also just to literally give up everything to these people who are putting all of their entire training and their entire lives into this, trying to save you.
00:15:58
Speaker
So I did that and anything that was in my control, I tried to do. So getting up out of bed and walking a couple of steps with a walker were huge moments. And I needed several people to help me out of bed, which is nuts. And then eventually the day came where I was trending well enough, I still had to take a pretty nasty antifungal IV because the oral application of it
00:16:29
Speaker
wasn't working at the time, but at least I'd be able to kind of get out of hospital. So this was late January, I think the last week of January. And so entering kind of with the goal of the next two weeks, just trying to be able to literally with assistance, like get up a few steps, walk a couple of steps, you know, with a cane or with a walker and build any sort of,
00:16:58
Speaker
you know, thing I could do to regain just a little bit of independence enough to like hop on a plane and get back home. That was literally like the entire goal. And then at the same time, you know, they were trying these new versions of anti-fungal medications to try to make sure that I was at a therapeutic level to be able to go home and ideally take it orally. But if not, you know, it would mean a couple hours of an infusion every
00:17:27
Speaker
every other day for like up to a year of something that has pretty nasty side effects and like would kind of make me short on a lot of supplements that I'd end up needing to take along with it. So, you know, the reality at this point was like, I'm going to survive, which is, which is crazy. Um, cause that, that was really the first time when I made it to, um, inpatient rehab that that's when I knew I was healthy enough to live. Um,
00:17:57
Speaker
And so past that point, now it's like game on, you know? And so whatever, whatever's coming up, it's going to be crazy depressing, you know, that I'm not able to walk a few steps. I need, you know, five people to lift me out of bed every morning to, to literally do anything. You know, I can't go to the bathroom by myself. I can't take a shower or whatever. But like, literally, if I can just creep up out of my bed an extra inch, like every day, it will be,
00:18:26
Speaker
we'll be making some serious progress there. And so by the time, you know, those two weeks went by, it was still unclear whether or not any sort of oral medication would work. So they sent me home with a PICC line in just in case I could have to get those infusions pretty often. But with a pending test to see if a very heavy dosage of what they just gave to me orally
00:18:54
Speaker
is at a therapeutic enough level to just take that. So I was on the plane ride home and got up a couple steps with some help with my dad on that plane to get back to my mom's just outside of Nashville and scary stuff, right? This is like the first time that I don't have like world-class doctors and trainers and whoever I could possibly need to do everything, I'm by myself. And with my mom, it was phenomenal.
00:19:24
Speaker
At the same time, there's levels of training and things that I had gotten so used to for survival the past couple of weeks that I thought it was way too soon. And trust me, I wanted to get out of there, but I was terrified. But once we did, I woke up the first morning I was there. Now, like 4 o'clock in the morning, I get a notification on my phone of those test results.
00:19:52
Speaker
I did in fact reach a therapeutic level with his oral drugs. And so that meant a radically different life for the next year. It means that I can just take these pills twice a day and literally just focus on putting on 70 or 80 pounds as quickly as I can, getting strong, getting my mental resiliency back. At the time, I couldn't read a page of a book
00:20:21
Speaker
without totally just getting lost. My mental capacity was just gone. So I was worried. I got a great job. I do really cool things for a living. And I love having deep conversations and being a productive human being. But I was worried that that was all going to be gone. But I think at the time, it was like I kind of treated it like a game. It's like I'm going to work really hard and I'm going to unlock areas of my life slowly but surely.
00:20:51
Speaker
you know, that, that I used to think were really, really easy, but like, you know, something like getting out of the chair by myself is like, uh, it was like harder than any marathon I ever trained for. And so, but I knew that those, that that's all I need to focus on now. You know, the medical side is, is handled. Um, so that's been my past year, man. And, um, it's crazy to think I mentioned to you, I wanted to get hyped up before this podcast. So I got to get work out in, but I can
00:21:21
Speaker
I'm like pressing 250, um, um, you know, getting some good shoulder presses of, you know, 70 or so pounds up there. And I've got a long way to go, man. But, you know, I think about that time in particular with, you know, that them having to decrease to the one pound weight and then them having to, you know, quite literally, I was so tall in those beds, like I'm six more, not that tall, but those beds are literally made for like people that are like five, four, but.
00:21:51
Speaker
Every time I would like drift, you know, keep on drifting lower and lower into my bed and I didn't have the strength to pull myself back up. So like they had to get two or three people like all the time, like every couple of hours, maybe two hours to get with me back up. But that was like the level of strength and fitness. Like I was at literally six months ago and that's, it's just almost unfathomable. Um, you know, now making.
00:22:18
Speaker
making friends, going out to dinner, having a work day. You know, every morning I wake up like an hour earlier than I need to, and I read, and I meditate, and I walk my dog, and like, just, I can do life again. And it's insane. The perspective is often overwhelming, but at the same time, it's like, I wanna, if that had to happen to me, I would not have traded
00:22:47
Speaker
in the past several months for anything else in the world. Because it's like just the level of tenacity and mental resiliency and perspective and understanding I'm a much more peaceful, calm person. You can punch me in the face. I'm probably not going to apologize to you at this point. But really, it's just living with insane levels of gratitude for the smallest details of life.
00:23:16
Speaker
is something really special. And so even though I've got two more kind of smaller procedures coming up to reverse some of the stuff they had to do, and definitely plenty of room to go in terms of physical and mental recovery, but it's such a privilege at this point that it doesn't feel daunting at the slightest. And I don't really feel like it's ever felt all that daunting really since
00:23:46
Speaker
I've left the hospital. It's been certainly shocking to realize how quickly the body has just totally declined on me. As someone that was very used to my body working very fully for me all the time in my mind, to be at the complete opposite and like, infancy stage of that is a radical thing to go through very quickly.
00:24:16
Speaker
But at the same time, it's like I've been able to just fill my days with things that keep me really happy and keep me really healthy. And I've been trying not to have a drink during all of this, because I want to really feel it. I want to really experience this stuff, because if Mayo's right and there are only two other people in the world that could remotely know what I'm talking about, I feel like I should be able to speak to it pretty clearly over time.
00:24:46
Speaker
Um, so it's, yeah, it's, it's been incredible,
Mindset During Health Crisis
00:24:50
Speaker
man. And I know that's a stupidly long winded way to answer that, but it's like, that's the thing is I can't not tell a single part of that because it's just so, you know, it's, it's who I am now. Um, and, and so it's, um, it's insane to be here just like talking about it casually because it was not a very casual thing to talk about not that long ago, but yeah.
00:25:15
Speaker
Yeah, dude, amazing story. I mean, I've probably read your articles on the medium, you know, five or six times. And it's just kind of amazing everything you've gone through. And it's it's so inspiring to watch you come through at the other the other side with, you know, a sense of gratitude. And just like, I think before we were talking, you described it as your superpower, this whole experience. And I think that's, you know, talking to you is it's such a testament to that how you really turn this
00:25:43
Speaker
into a golden experience that's going to propel you forward. I just want to maybe take a step back, dive into your headspace a little as you were in the inpatient setting. Just a little snippet from one of your posts here. You were describing one of your low points and he said, I had enough mental capacity to be almost certain that I was about to die.
00:26:08
Speaker
I even contemplated that not being too bad a result since living in my current condition was no way to live at all. So really, yeah, I know you already touched on it a little bit, but what's it like just being that close to death? Yeah, I mean, it's something that... It's weird. The past few years, I've really focused on my mental health and
00:26:35
Speaker
it would focus on meditation and learning kind of the concepts behind all of this stuff to try to prepare me for this crazy world. And I felt the most prepared I could possibly be, but still wildly unprepared for a moment like that, because it's, you know, it's something that you just can't feel until you're there. I think you can,
00:27:03
Speaker
you can get close and understand things like, oh, this is my emotional response to the situation. So that emotional response is something that I need to be aware of my reactivity toward. That's something that I try to practice a lot. And so at that point, being just so overwhelmingly exhausted and so just like, I don't know, just the unknowing and me fully giving up
00:27:33
Speaker
any control that I have over my life, you know, after being someone who had a lot of control over his life and, you know, a routine that was just entirely crazy resilient, you know, to be able to do none of that and not really see the point where you will be able to do that ever again is really scary. And so I think I
00:28:02
Speaker
My preparation allowed me to at least point out those feelings that were kind of causing my reactivity to it, but it didn't make it any easier. It just made me more aware. And so in being aware, I think I was able to at least offer myself some clarity during that time and in turn kind of allow myself to be
00:28:30
Speaker
a little bit more at peace than I would be otherwise, at peace with an outcome that wouldn't be in my control. And so if I were going to die, you know, sucks. I had a lot more to do and I had a lot more that I was planning on doing, but, you know, this is something where if I'm going to experience it, I'm going to, I'm going to experience it and not let my mind just race through it in a blur.
00:28:57
Speaker
you know, this is this is part of life and this is what I have to have to do if that happens. But at the same time, you know, it's practicing gratitude, you know, every day and, you know, realizing perspective and placement, you know, there are fleeting thoughts in my mind of also things like, you know, what if I was someone somewhere else and like didn't have the
Mental Preparation and Gratitude
00:29:26
Speaker
crazy, incredible insurance that I had, you know, and didn't have their parents there to look after them and didn't have any sort of support system. What if I were to die and, like, no one would miss me? Like, I know that, like, people really would if that were to happen. And, you know, there were fleeting thoughts of positivity even during that time that I think really propelled me to keep trying in whatever capacity I could. And so if that means
00:29:56
Speaker
you know, don't mind so much and don't be so hard on yourself when you can't do stuff, you know, in those dark moments like that helped a lot. Because just being patient and knowing that, look, there's a whole side to this that you have zero control over, which is kind of this side that you're leaving, you know, your fate up to these incredibly talented, you know, doctors and staff to figure out.
00:30:22
Speaker
But there's very few things that are in your control, but the one is your response to what's going on right in front of you. And so my response wasn't, I didn't want to feel sad. I didn't want to feel overwhelmed. And I realized that's a very natural response at that time, but I had some little control over that. And so I think that's really what
00:30:51
Speaker
I focus on those like couple of critical days there where it was like really looking still very bad after I got my surgery is that, hey, like this seems like the worst thing in the world and it's probably damn near close to it, but there are still very much worse and more troubling situations that people have to go through and hell, like if this is it, I've lived an awesome life. Like a short one.
00:31:21
Speaker
but a really awesome one. And that's our trip privilege and a really cool thing to be able to say, even when you're 20, 26 years old. So I think that was really special to just be able to go there. And as you mentioned, kind of the superpower now is, I mean,
00:31:47
Speaker
That's the lowest of the low in a variety of emotional states that I will ever get in my entire life. And, you know, if there's even a single fleeting thought of positivity through that, then it's like nothing compares to even comes close to like you having to be very intentional about how, you know, you live day to day.
00:32:12
Speaker
Um, and, and so now it's, it's so easy for me to, to take the bright side of something or, you know, to someone that cuts me off in traffic. I'm like, Oh, whatever. Like it's not, life is not so serious, you know, just because I've, I've been there. And even though I would never wish that on anyone, what I, what I would wish is that they'd be able to come out of it. It's just kind of that immense perspective and understanding of.
00:32:40
Speaker
of what it looks like to stare that in my face and say like, no, like you're just not, you're not taking over me. Like if I'm going out, it's on my terms. Like there's not, there's not much on my terms, but this, this one can be. Um, so yeah, that was easily a very pivotal point of my life and something I'll certainly take with me forever, but you know, it could have been disastrous if I just let it, you know, faster.
00:33:09
Speaker
Just taking it a step further though, just almost from like a spiritual perspective, do you feel like in those moments that you sort of tapped into something you didn't even know you had, whether it be sort of God or a higher power in those moments where you were kind of right at the edge there? For sure. I've thought about this a lot and it's hard for me. I consider myself kind of agnostic in the fact that it's like,
00:33:36
Speaker
I'm just not smart enough in a lot of capacities to understand what the hell this world is about. And I feel like the more I learn about the world, just the less and less and less I actually know about it. And I think that the absolute pinnacle of that realization in my life is God or any sort of connection to spirituality. I think at that point I was very inwardly spiritual in that
00:34:07
Speaker
I understood the differentiation between what was going on in my mind versus what my body was trying to accomplish versus what people around me were trying to accomplish. Everything seems very clear to me in terms of the puzzle that was going on that was trying to be solved. And if it didn't get solved, it'd be death. But I understand everyone's doing their thing. So that point of clarity, I don't know. I don't know where it comes from.
00:34:36
Speaker
If it was God, I owe him a big one. But if it was some part of the human experience that just emerges at those really critical, and I mean deeply, deeply critical moments, that's what it was. So I try probably less to focus on the how,
00:35:05
Speaker
because I just don't know. And a lot more on like the what, you know, the what happened and the why of, you know, now that it happened and I'm on the other side of it, why did that, you know, why is that now a part of me? And like, what can I use it for? I think I could, I could overwhelm myself for a long time to think
00:35:33
Speaker
what the hell happened there to get me out of there? I know from a human perspective and from my conscious perspective, it was the people around me supporting me and the mental capacity to stay remotely aware and a little bit emotionally attached from what was going on. But beyond that, it's pretty inexplicable.
00:36:00
Speaker
I don't really have a great answer for how it happened. And I'm okay with that. I'm not going to spend the rest of my days just wondering what causes someone to respond that way when they're about to cease to exist. But it's something I'll hopefully delay for a little bit longer now. But I'm okay with it. I'm very much at peace with the fact that that's kind of where your mind
00:36:30
Speaker
can go. So prepare if you can that you probably can't and be okay with that. Just like be really patient with your mind and your body that's going through these extremely insane stressors, you know, and it's a miracle that they're able to survive it, but it's also a miracle when they don't, you know, it's just, it's, it's part of life and it's a really, really cool part of life.
00:36:57
Speaker
I want to kind of shift a bit.
Importance of Relationships
00:37:00
Speaker
Something we've talked, or at least I've talked to people about a lot on this show is just the healing power of relationships and how important that is. I know we've sort of gotten, we've talked a lot about the medical situation, like what kind of was going on physiologically in your body, but can you just kind of talk about the, when you're at that point, like you said, those critical points, I feel like
00:37:28
Speaker
I think you're hard pressed to find any moments in your life where you would have deeper relationships with people around you. Can you just speak to those relationships you had at Mayo and how that was also part of the healing process? Yeah, no, that's massive. I will never look or be around my parents the same way again after where they've seen me go.
00:37:58
Speaker
and what has happened to me while I've been around them and realizing how they handle it and then realizing how I handle it. And again, I mean, they might've had it worse than I did because at least my mind was kind of blurry. They were fully concentrated on saving their son. And it's something, again, that it's like you just push it to the brink of
00:38:28
Speaker
where you think it's possible to go in terms of the human relationship and connection. And I don't think that's a surprising thing when you talk about family and friends and people that you're already very close with, but just going to an extreme. I think the most surprising thing is that feeling toward doctors and nurses and people that you're meeting for the first time. I quite literally think that
00:38:56
Speaker
those people that I've met at Mayo, it's really weird to think that they've played as critical pretty much as a role in my survival and ability to live through the human experience as like my parents. And like the people that are literally closest to me, I've only met a few months ago. And
00:39:25
Speaker
You know, close has many definitions, but, you know, when I mean close, I kind of mean, you know, seeing you at your most vulnerable possible state and being nothing but supportive and pushing you and everything, using every single thing at their disposal to make sure that you are going to get to whatever is the best possible state from that low position.
00:39:53
Speaker
That's a really powerful and crazy thing. And so I actually spoke with one of the doctors that was in the ER at the time, kind of right around the time of my surgery when it was really just not looking good at all. He read my medium post fortunately and reached out to me over Twitter and was just mentioning how
00:40:19
Speaker
first off, like unbelievable of a thing it was from his perspective, but also just the potential power that our relationship could be after the fact if I wanted it to be. And so that means keeping in touch with these doctors and nurses and staff that helped me through at these really critical times from quite literally the brilliant minds that were able to find those possible
00:40:48
Speaker
ways to heal me, you know, all the way to people like just cheering me on when I'm walking down a hallway for, you know, 50 feet on a walker, like going like slower than any old man I've ever seen try to walk. But like, they've each played such a critical and, you know, such a spontaneous and selfless role.
00:41:15
Speaker
like through the most vulnerable critical points in my life. And it's, that's something I wasn't prepared for at all. To feel like by the end of that leaving, it was like, not only was I just really overwhelmed for my own recovery process, like I was overwhelmed because I'm leaving these people that have helped me survive the past several weeks. And I've played literally a like crazy important role in doing that.
00:41:45
Speaker
Um, so what's, what's really special and cool is when I go back to Mayo and in a couple of weeks here and, you know, probably a couple of weeks after that for two more kind of quick procedures, hopefully, like I'm going to be meeting these people and going to dinner with them and like getting to know who they are, where they come from, who their family is, like what relationships they have. And, um,
00:42:10
Speaker
It's crazy that I don't know them on that level. I don't know them on the small talk level. I know them way, way deeper than that. But I don't know any little detail. I barely, I had to look up their emails and their names and stuff. But they were literally the only people in the room. And so that's a really crazy,
00:42:39
Speaker
experience and one that I think gives me just a more positive outlook on humanity and that there are people out there that lay it all on the line for very little benefit of their own to make sure that they can do everything in their power to heal and to solve and to
00:43:06
Speaker
do whatever they possibly can, and they fail quite a bit. But damn, when it works, it works. And I want to make sure that when I meet them again, they know that those, I'm sure, were some of the harder nights in their careers, and it's not going to go to waste. And part of that would be a waste if I didn't keep in touch with them and check in and show them my progress and ask them about their life outside of
00:43:37
Speaker
you know, the hospital, which very much exists, but that's, you know, all I know them for right now. Um, but it's pretty cool. I think, yeah, with, with doctors and, you know, with my, with my parents in particular, it's like those, I don't, I almost hope I don't have relationships as deep as that ever again. You know, cause it's like, you have to be pretty much in that
00:44:05
Speaker
level of circumstance to be able to have it. But I'm so thankful and grateful that they were there because that's why I'm here. Yeah, that's super cool. I mean, I think for a lot of doctors, I'm sure there's certain patients who just always will stick out in their mind. And I think for some of those guys, you're certainly that. And as you continue to recover and thrive, I'm sure that's just, you know,
00:44:34
Speaker
making them making it worthwhile for them. And I think that that's something so special that you can do for them. Yeah. I mean, I've never ended the life of a doctor, really anyone that works in a hospital. It's a very insanely hard environment. But I think after this is the first time that it actually understood why, why people do it is because it's just like,
00:45:02
Speaker
Literally, if this happens to them one time in their career and it was, you know, me, they're able to get through something that's this complicated, like I need to make, it's my obligation now to make it as fulfilling as humanly possible for myself, but also for those, you know, support systems throughout. It's, I feel very much like a deep obligation to work toward that every day.
00:45:30
Speaker
I want to blow this up a little bigger picture now, kind of looking at our healthcare system.
Reflections on Healthcare System
00:45:39
Speaker
It sounds like there was a lot of ups and downs throughout your whole journey. I think you have the experience, too, of you dealt with this chronic issue for a while. That has a certain number of experiences associated with it. Then you were kind of in a more acute setting. So as you've gone through all this stuff, ulcerative colitis and then the whole hospitalization,
00:46:03
Speaker
Can you just sort of reflect on moments or aspects of our healthcare system where where things really shine and other and then on the flip side kind of things that are really broken in our system? Yeah, I think I can go on a longer winded answer. But the summary of that is I think we have some of the most talented, incredible people in the world working on this in the system, and probably some of the, I guess, like, some of the worst designs of
00:46:33
Speaker
a system or how data talks to one another or how insurance and how medications are handled that I could have possibly imagined just in terms of like I am so fortunate to have probably some of the best insurance that money can buy through my company and with that my
00:47:01
Speaker
experience has been extremely painful, like in terms of getting, you know, medications with prior authorizations approved, getting pharmacies to override, you know, certain kind of caps on, you know, medication prices and getting doctors to, you know, have their systems talk to one another when they're using, you know, legacy things and have stuff in paper and, you know, sending files that aren't formatted correctly that I only figure out
00:47:30
Speaker
a month later, you know, when I'm still on prednisone and stuff like that, that's making me extremely susceptible to bad things. Like I was very much at the mercy of our healthcare system to be able to get this level of care. Um, and like I had said, I mean, I'm, I've got pretty much the best of the best. And so if, if I was really suffering through a lot of this, it gives me a lot, you know, more perspective of like, this is bad.
00:48:01
Speaker
And it's bad not only because stuff is old and trying to adapt to a more technological era. I think it's bad because of access and lack of it. Without this insurance, I'd probably end up with a several million dollar bill at the end of this.
00:48:28
Speaker
that I'd be working to pay off for the rest of my life. And with this, a couple thousand bucks, which I'm so fortunate to run away with. But I just can't imagine for anyone who wasn't in my perfect position, I don't think they would have survived. Because by the time it's getting these medications in your system, going to hospitals, getting approvals,
00:48:56
Speaker
try different medications and also require new prior authorizations and new things for my insurance to try to bill against. Doctors can only kind of move at the pace that that moves. And trying to get medical transport from one hospital to another and having to prove to a company that I need it, even though you've got teams and teams of experts saying that I'm going to die if I don't. That's really concerning.
00:49:27
Speaker
So I've kind of realized that, one, the fact that your insurance is connected to your employment makes no sense to me at all. In fact, the people that necessarily need insurance far more are people that are worse off and either are unemployed or aren't employed at a place that offers them really good benefits. Those are probably the people that have worse symptoms and problems and things that they need to address.
00:49:54
Speaker
So you're really addressing the wrong market when you talk about kind of insurance being tied, really good insurance being tied to people that already probably live a very healthy and good lifestyle. And then on top of that, I mean, there's got to be a better way in terms of how data flows and how stuff should not take five business days to clear.
00:50:24
Speaker
Your body and medication and care cannot be dependent on the administrative side of our healthcare system. It's just not sustainable. And so like I said, I think what I'll praise our healthcare system for is developing all of these incredible medications and all of these incredibly talented people to figure this stuff out and to do so in time to help people survive.
00:50:54
Speaker
they will always be at the mercy of this big overhead that's looming where they just can't push stuff through at the pace that they're coming up with it because of a giant bog down system. And I'm not going to pretend I know the answer because I really don't. But I do think that that's a huge concern for the future of the world of medicine, not just in the US, but anywhere, is that
00:51:23
Speaker
There's this whole administrative side and even like profitability side and all of it that is just really against what healthcare should be about, which is caring for your health and actually healing people, right? So it's like you have these very poor incentive structures on one end that is entirely in charge of incentive structures on people that are just trying to help others survive.
00:51:51
Speaker
And that's, that's a really challenging thing. I know that's a huge deterrent for people, you know, to stay passionate and, you know, rejuvenated in the medical field, but it's, you know, such an opportunity as well in my mind for us to get better at. So I hope that, you know, I know that I'm not the only one that's been at the mercy of something like this. And, you know, I know people live with medical debt and even fricking inherit it from their parents, you know, just trying to,
00:52:19
Speaker
trying to save them in certain situations and that just something's got to give at some point. And so I think the structures that we have in place right now to incentivize care are just a little out of whack, which is concerning if they kind of continue that way. Yeah. Now, I remember reading
00:52:42
Speaker
kind of in your article, and you mentioned it right, even when you were heading to Mayo, even when you were like, at your critical of critical moments, still somehow there was, you know, the bureaucracy and the billing and everything managed to either delay or kind of present an obstacle to your care. And I just, I imagine both you and your family must have been just, yeah, just like, you know,
00:53:12
Speaker
I think everybody gets the idea there and how frustrating that must be. When time is of the essence too. Yeah. And I remember going through my mind and I try to remember this a lot because service industries of all kinds are very frustrating, right? But we worked in some service industries before too. And who's the blame in this situation?
00:53:38
Speaker
Is it the doctor that's trying to save your life? Is it the insurance company that has management that's insisted that you need to get a return on the investment for people that pour money into these companies? Is it the government who has tried to offer some solutions but can't get it done? There are so many sides to this that would need to come up with some sort of solution that being mad at just like the person on the phone that's not getting through
00:54:06
Speaker
a specific medication, a specific time, it's just not, you're not looking at it holistically enough. And it's such a waste of time, you know, when you're just like yelling at a pharmacist for literally like absolutely nothing that they can do about it. You know, much more broadly, it's like, you know, okay, why are they not giving me this care? And like, so doctors are saying, I totally need it, I need it, you know, yesterday, if possible.
00:54:34
Speaker
But an insurance company is waiting on approval, but they only are doing that because XYZ says that they have to. And then a medical board says that you can only do these things. I can't receive care out of state for this one medication that I need delivered in California from once I go home. It's like, what's to give here? So it's, yeah.
00:55:00
Speaker
Yeah. And it's definitely exhausting and daunting, but I think it's just like, it's hard to even put a dollar, much less like a human figure on what would be resolved if we resolved all of that. Like just in terms of like how much healthier people would be and how many more lives would be saved and
00:55:27
Speaker
how much less capacity hospitals would have to deal with in terms of having to keep healthy people around just because they can't be released for this ad or the other reason. It's almost impossible to overstate the value of figuring that out. And so that's definitely something, if I ever come into the resources or into the field where it's possible to work on something like that,
00:55:58
Speaker
I would love to try at least at least get some discussions in the right direction, um, because it's just so critical. And, and again, like I am the 1% of the 1% of the coverage of like what's possible in that system. And I had a miserable time. So I just can't imagine the average person who, you know, either doesn't have insurance has heard that insurance and, you know,
00:56:25
Speaker
families that aren't there to push things through while they're sick and like all this stuff, like, yeah, I'd be dead 100%. Um, but I can't imagine like how many cases there are just like that. It's crazy.
00:56:42
Speaker
Just wanna wrap up our discussion and kind of look at overall how this experience has just affected you.
Life Changes and Gratitude Post-Recovery
00:56:50
Speaker
I know you said kind of before your sort of health crisis, right? You'd wake up at 5.30, work out, meditate, feed and walk the dog, shower, breakfast and coffee, check out the news, go to work, make dinner, so on and so forth. And you just put repeat.
00:57:12
Speaker
With kind of curious, you know, when I read that a couple of times, like going through all this stuff, do you feel like you've sort of just, have you settled back into that? You want to settle back into that? Or is there, you know, do you kind of do it in a different way? I'm kind of curious whether you've sort of gone back to that or your life's different now. Yeah, I mean, so it's funny, I haven't read that in a while.
00:57:38
Speaker
that exact routine that I had before, but it's pretty much word for word what I do now. Like almost spot on. Maybe except I read a little less news and I read more books that I've been wanting to read for a while. But the huge difference is along each individual step of that routine, so me waking up
00:58:04
Speaker
I used to just fly through that and go to the gym and hop on the bus and walk my dog and do this and the other thing. But now it's really cool that I can get out of the bed by myself now. It's really cool that I can walk a couple steps. It's really cool that I can have the strength to hold onto my dog who's getting pretty big now.
00:58:26
Speaker
you know, walking around the city. It's really cool that I have the mental capacity to be able to read and focus on like this news or whatever. You know, it's really cool that I'm able to go to work and perform at a really high level again. It's just like each of the steps, I don't just do it because it makes me feel like I had a good fulfilling productive day. I do it because I can again. And it's like that, that level of perspective and
00:58:56
Speaker
understanding of very small details of your day is a really crazy way to live. Um, and it's a way to live that I wish I could give to every single person that I know without them having to go through that experience. But I realized that that's impossible. Um, so I might as well leverage that, you know, for, for my life for years to come, hopefully is, is that,
00:59:22
Speaker
All of the minute details of those transitions between those actions are just as important and incredible and cool as like the actions themselves. Um, and that's really what I want to focus on forever is to not lose touch of that. And so even though my days are faster and I'm able to do things and multitask and, you know, cook while doing like a hundred other things and listen to TV shows and whatever, like.
00:59:51
Speaker
I just was so not able to do, to just get out of bed like six months ago, like just not, not long ago at all. Um, and so the ability to, you know, to be able to do this stuff, you know, I haven't, I haven't missed a single step in that routine, literally, I think since I've left the hospital, but it's like, that it just, it feels like I'm living so much more because I'm
01:00:19
Speaker
realizing what I'm doing throughout all of it and not just doing it. And it's cool, man. Like I said, I'd share it if I could, but if folks could at least take a second to just look at what their hands and their feet and their mouth and their minds are doing to be able to do the stuff that they want to do today.
01:00:50
Speaker
I think, um, yeah, you getting, getting angry at the telemarketer that calls you at seven, you know, right before dinner or the person that cuts you off in traffic or the little noise that's taking place down the hall when you're trying to sleep. Like it's just, who cares? Like that's not, that's not even remotely like the cool parts of life that you should be totally, totally grateful for. So I'm hoping to continue that. And at the same time, like I don't want, I don't want it to overwhelm me.
01:01:20
Speaker
You know, I don't want to be afraid to walk up a flight of steps because every single step, I'm amazed that I can go up one, right? But at the same time, just appreciate that I can and then move on and appreciate the next thing and just be very present and very happy that, you know, this stuff is coming back into my life and that greater velocity. And, you know, I'll try to earn it back and then some. Right on, man. It sounds like, yeah.
01:01:51
Speaker
You're seeing the extraordinary and the ordinary and kind of bringing that sense of wonder to your everyday. And I think that's what it's all about. Yeah, life is pretty cool. Yeah, I think the minor inconveniences tend to accumulate into far worse reactions than you should probably have. But the opposite is true, too. The minor miracles that are going on at every step of the way
01:02:21
Speaker
you know, we sometimes don't let them accumulate it to joy when we really should. So like that's, that's something that I'll try to practice forever and try to preach it to while I'm at it. Right on. Parker Lyons, thanks so much for joining the show, man. John, it's a pleasure, buddy. It's great to catch up. And this is not going to be the last time that we do just for a podcast sake.
01:02:55
Speaker
Thanks for listening to The Wound Dresser. Until next time, I'm your host John Neery. Be well.