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Healing is a Partnership | Joe Balusik's Story | Healing By Design EP3
11 Plays3 days ago
What can healthcare providers learn when they stop talking and start listening to the patient?
In Episode 3 of Healing By Design, hosts Jennifer Bierhup and Therese Laub sit down with Joe Balusik to discuss his journey following a spinal cord injury that changed his life overnight. After decades of living with paralysis and navigating chronic wounds, Joe shares the lessons he's learned from both the patient chair and the healing journey that followed.
Joe reflects on rebuilding his life, overcoming pressure injuries, and the partnership he developed with his wound care team. Through humor, resilience, and honesty, he offers a perspective that every clinician, caregiver, and healthcare leader should hear.
Together, they explore the importance of patient engagement, communication, trust, and why successful wound healing depends on treating the whole person, not just the wound.
This conversation is a powerful reminder that the patient perspective is one of the most valuable tools in healthcare, and that healing happens best when patients and providers work as one team.
In this episode:
• Joe's spinal cord injury and life changing diagnosis
• Living with paralysis and chronic wounds
• The patient perspective on wound healing
• Building trust between patients and providers
• The role of communication and education in healing
• Resilience, humor, and maintaining hope
• Why healing is a partnership
Healing By Design is a podcast powered by PAWSIC that explores the people, processes, and perspectives shaping better outcomes across the continuum of care.
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Transcript
Introduction and Welcome
00:00:00
Speaker
If you could give a couple of words of advice for us, what would you want us to hear from your perspective as being a wound care patient for all of these years? What are what are some what are some Joe's pearls of wisdom?
00:00:15
Speaker
Try not to treat a patient like a slab of meat that you're dealing with. Hello, everyone. Welcome to Healing by Design. the podcast where we amplify the voices that matter most in wound care. I'm Jen Bierup and I am here with my co-host Therese Laub.
00:00:30
Speaker
We are so glad you found us and we can't wait to dig into today's conversation. Before we jump in, I do want to take just a quick moment to cover a few things. Everything we talk about on this podcast is meant to educate and inform. It's not medical advice and it shouldn't be taken as a diagnosis or treatment recommendations. Your situation is unique and your health care provider is always your best resource for decisions about your care.
00:00:53
Speaker
The opinions our guests share are their own. They don't speak for POSIC or our sponsors. And if any of our guests have professional or financial ties to products or companies we discuss, we'll always be upfront about that. One more thing, if you're ever dealing with a wound care emergency, please don't look to us for that. Go to a provider right away. Now that we have all of the disclaimers out of the way, let's dive right into our show.
00:01:17
Speaker
So Jen, I am so excited to get started today. um We have an amazing guest joining us and we're going to have a great conversation over this.
Wound Care Innovations
00:01:26
Speaker
But first I want to talk to our audience because i think anybody in wound care right now has noticed especially over the last couple of years and dare I say even in the last maybe six months, that wound care is really changing. There's a lot that we're seeing now that we haven't in the past with AI coming, the documentation tools that are out there. We've seen even a lot just how we measure wounds, right? There's a lot of different things now that are gonna be available to us.
00:01:53
Speaker
And it's just been an incredible journey as we're watching this as either providers or, you know, nurses that are seeing patients. But one thing I think when we look at everything that's going on that we don't see is the perspective and the journey that the patient has. You know, because it's easy to get caught up in all of the all the newness, all of the technology, all of the the science behind it.
00:02:19
Speaker
um But seeing a patient and where they've been and how they're going through this journey, you know, sometimes it's, you know, they
Joe Belusick's Journey
00:02:26
Speaker
can't get an appointment. They can't get somebody to see them. They're having a problem getting their dressings. You know, it's it's difficult in a way that sometimes I don't think we understand.
00:02:35
Speaker
um So today we have Joe Belusick, and he has been on an incredible journey since 1995, where he had a spinal cord injury. So he's been in our system for quite a while, and um we're going to talk to him about his journey, some things that have been great for him, some things that he may think we could change, um and just learn more about what he's been through. So Joe, we are incredibly excited to have you on and thank you so much for for sharing um and welcome to our podcast.
00:03:06
Speaker
i'm Pleased to be here. Yes, we are so excited to have you, Joe. Now I'm going to do a little disclaimer so that way the audience understands the relationship that Joe and I have. um Joe and I go way back, like way back. um ah Joe, when was that? Probably 2000
00:03:29
Speaker
Let's see. would, think it was right around 2009. I had just gotten divorced and moved back home to my hometown. So. That's right. That's right. Yep. Yep. was 2009, 2010, maybe. Okay. Right around there.
00:03:43
Speaker
Right around there. Yeah. So Joe came to see us in the, in our, in our wound care center. And um we were instantaneously, I mean, he just became, of course, one of our most favorite patients.
00:03:56
Speaker
We all looked forward to seeing Joe. But, you know, ah up to that point, Joe was great. Like, you know, his all of his skin was great up to that point. So our relationship began with really his very first introduction to having a wound. And so, and ever since then, I've kind of been, and and some of us in the Wound Care Center have kind of been along for Joe's wound journey. So if it sounds like I know a lot about what's going on with Joe, it's because I kind of do.
00:04:25
Speaker
Yeah, I mean, in in a professional sense, you probably know more than you should. yeah you know, I mean, because over the years, we've become more friends at this point than than professional people.
00:04:39
Speaker
Right. And sometimes that's what's really amazing, right? When you work with patients is to get that kind of rapport. But, Joel, let's start. Tell us exactly what happened. You know, explain to the audience where where you got to where you're at here. Oh, boy. Okay. Well, let's let's go back to 1994. Mm-hmm.
00:04:57
Speaker
um I was 26 and the the company that I was working for at the time, i was the big guy. So I did a lot of the toting of barges and moving of bales.
00:05:09
Speaker
No big deal. I'm used to it, you know. um And I had a some low back pain for about two weeks. Nothing out of the norm for me, you know. I mean, young guy doing a lot of physical labor.
00:05:22
Speaker
Back issues were no big deal. But there was this was a bit different because I started getting a tingling sensation in my right leg. And as the week progressed, the sensation changed to numbness, complete numbness, and very little motor control, gross motor control.
00:05:41
Speaker
I mean, I was literally driving my pickup truck by putting my foot, lifting my foot up and putting it down on the gas and putting it on the brake. Um, I'd been seeing a chiropractor for a while because of the back issues and things and made an appointment and they were like, no, let's take new photos. My x-ray technician is not here today because it was like after five o'clock one evening.
00:06:04
Speaker
I said, yeah, I'll come back tomorrow, first thing in the morning. so And this is December nineteenth so like Oh, right before Christmas. Yeah, go to bed, wake up in the morning, and like most people, I go to so you know sweep my legs out of bed and put them on the floor and get up and stand up and run to the shower and start my day.
00:06:26
Speaker
oh Couldn't put my legs on the floor. My top half of my body literally fell out of bed and hit the floor. I said to my wife at the time, I said, hon, think we've got a problem.
00:06:38
Speaker
Something's not working. No. Moved forward a little bit. I called my best friend for some help because I figured, you know, if I can get to work and I can get to the the chiropractor, I can get this ironed out. Maybe I just pinched a nerve or something. Oh. So he came over and we brainstormed how to get my butt in the truck. And it was kind of like, I don't think this is going to work. So I immediately reached out to my folks.
00:07:02
Speaker
I said, what what should I do? And they're like, um go to the hospital. Right. get Get to the hospital. Get checked. Go to the ER, please. Yeah, something is big big time wrong. Go. So that's what we did. That began...
00:07:16
Speaker
the slow precipitation of the tingling sensation moved across my pelvis and down into my other leg. And everything was gone by that afternoon of the 20th. Oh, goodness. I mean, just gone.
00:07:28
Speaker
Yeah. Oh, my goodness. I've had pretty much every test known to man neurologically to figure out what it was. And at that time, very, very few cases of transverse myelitis were known.
00:07:43
Speaker
And that is my official diagnosis, transverse myelitis, the indeterminate etiology. Wow. Big fancy phrase for, we don't really know what happened. Right.
00:07:54
Speaker
Right. Yep. They did find that there was ah about a dime-sized lesion on my spinal cord where, you know, the the myelin sheath was worn away in ah about a dime-sized area. And they don't really know what caused it. They don't know if was viral. They don't know if it was right physical. they They just don't know. Right.
00:08:11
Speaker
ah That's scary. You're telling me. yeah i mean, my life changed in an instant. Oh, yeah. And you're 26. 26. 26. Married five months.
00:08:23
Speaker
That's right. Oh, my gosh.
Career and Design Achievements
00:08:25
Speaker
You were just married. You just married. And so but i I looked at my perspective on the world changed, and it was just like, what do I got to do to get back to living normal life?
00:08:36
Speaker
Just tell me what I have to do and I will do it. And that's that's the way I attacked rehab at MCO at the time, a University at Toledo Medical College. And was it fortunate enough to go through a great rehab program there at the time and learned all the skills that I needed to learn to live my life in a wheelchair in record time.
00:08:58
Speaker
They had actually never seen anybody go through the program that fast because I was i was driven. I was determined. Um, and went back to work because ah at the time I was working as a screen printer slash graphic designer.
00:09:12
Speaker
So I was fortunate to be able to go back to my job. So I did. And that was the way things were for quite a while. Um, actually made a career change while I was there for the better, ended up having an opportunity afforded to me, ah to go to work for Owens, Illinois glass corporation, working in their screen printing department.
00:09:38
Speaker
And then that led into CAD, CAD, CAD, CAD cam design for glass containers in their glass division where I spent the last 26 years. Yeah. And Joe's designed some really super cool. Joe, quickly, tell them about the super cool bottle that you designed. And that was your design. And yeah I want to hear. I love I always love hearing Joe's bottle stories. yeah Well, it's it's not very glamorous. I mean, you know, number years ago, Miller Brewing wanted to do something unique with their Miller Lite beer bottle.
00:10:12
Speaker
And we had been kicking around an idea in our development area how can we get the beer? And this, I shouldn't say this because we don't really want to do this to the alcohol industry, but we wanted to get the beer out of the bottle faster.
00:10:27
Speaker
I mean, there's there's a stigma about binge drinking and things like that. And that's that's a very real concern. But we thought it'd be kind of cool if we could figure out a way to to evacuate the product out of the container faster.
00:10:41
Speaker
um So myself and my my team leader at the time, we kind of kicked around this idea that what if we put some... striations in the neck of the bottle to to give it a little bit of oomph. And we experimented with a few things and I came up with this way to do it.
00:10:59
Speaker
And we ended up putting a little corkscrew ridge in the neck of the bottle. Miller loved it. They called it the Vortex bottle. It was a big marketing push for them for the better part of two years. They were putting it on their NASCAR right graphics for their NASCAR sponsorship. I mean, it was it was a big deal.
00:11:20
Speaker
Yeah, that's so cool. And it sold really well for them. ah Mostly because we were also able to put real data behind the fact that it it actually did help the beer pour faster.
00:11:32
Speaker
That's that that's a thing. They want yeah to go faster. Yes. And, you know, consequently, once Miller's option on that ran out, because it was our technology, but once their option on it ran out, we we were contacted by some wineries that wanted to do the same thing.
00:11:49
Speaker
you know yeah, because wine should come out faster, too. Yeah, and it helped air a point. Yeah. but Well, the nice thing for wine is it helps aerate the product. Yes. And red wines especially like to have extra oxygen, you know, give, let's let the wine breathe. Well, yeah having it able to flow out faster and and get kind of rippled while it's doing it helps that even more. So there were a few Australian companies that grabbed onto it real fast and said, we want to use this too. So...
00:12:19
Speaker
That is so awesome. That is impressive. And then that led to a couple other adaptations of the technology and whatnot. It was kind of cool. And then you also did the super quick because I know we're getting off on bottles, but I want just i want to give credit out to where credit's due because Joe was a big part of the Sobe the sobe um so beverage this lizard. Yep.
00:12:41
Speaker
the lizly yes no kidding yep So, yeah, I've got a couple of little feathers in my cap that I'm quite proud of. Wow, you're famous. I i know Nobody knows who I am. but mean, I'm just. Now we do.
00:12:57
Speaker
Well, yeah. I mean, what kind of a reach is this going have for me on a personal level? Not much. And I'm not worried about it. I've always been team player. Yeah, I know. I was a football player. I played line. So we got no glory. We just did all the dirty work. You were the lone minister. Yeah.
00:13:14
Speaker
So I'm used to that. I'm good with it Did you play in college too? Remind me. I had an opportunity. I was recruited. Okay.
Life in a Wheelchair: Challenges and Adaptations
00:13:21
Speaker
And quick story there is I showed up on campus, did my campus tour. And I said to the gentleman taking me around, I said, so where's the art department?
00:13:31
Speaker
Oh. And this particular school is known for their science and business programs. And he flat looked at me and said, I don't even know if we have an art program. Oh. And I said, okay. Well, i met with the coach and the coach is like, we'd really love to have you here. And, you know, we we think there's a place for you. And I said, well, I don't know if I can be here because I want to study this. Right.
00:13:54
Speaker
you know i'm I'm looking to trade my education for my sports ability. And if I got to study something I don't want to pursue just to play, I don't want to play.
00:14:06
Speaker
So there you go I turned down an opportunity so that I could pursue what I wanted to. Well, and that was important because obviously you created beer pouring faster. Well, i'm not bad for a kid who studied drawing and sculpture in school. Right. That is not bad at all.
00:14:21
Speaker
I mean, I literally fell backwards into this job. so but But, you know, what's funny is that a part of your actual, i mean, we can talk about this, but a part of how you got into that job was, you know, having friends that also were...
00:14:37
Speaker
you know, wheelchair bound as well. Yeah. I was able to get that opportunity because I became disabled. I would have never had the opportunity if it hadn't have been for ended up in the chair.
00:14:48
Speaker
yes Yeah, that's pretty cool. The person that I met, I would have never met. And, you know, as fate works out, it's often strange and beneficial. Yes, right, exactly, exactly. That's so cool. So going back, Joe, I i have a question. After you you shared what what happened in 95, and and i just can't even imagine what that of would have been like, trying to deal with that. Oh, my gosh, being young, being just married. Yeah.
00:15:17
Speaker
But I'm curious because, you know, times have changed since then in our healthcare system. But did you did you struggle with with care? um How did it go? Were you in ah like ah um a facility for a little while?
00:15:30
Speaker
did they or was most of your stuff outpatient or... The only time that I spent, I mean, i I spent like two weeks in actual acute care at UTMCO.
00:15:41
Speaker
And then they quickly moved me into their rehab pavilion. and So you were doing like acute rehab? Yes. I was inpatient rehab. hu And it was every day.
00:15:52
Speaker
you know, there was physical stuff every day. There was occupational therapy. There was was occupational, physical, and there was ah one other aspect. Well, you wouldn't have speech.
00:16:05
Speaker
No, I wouldn't have had speech. yeah Yeah, he wouldn't have had that. but So, I mean, ferrari in all reality... You know, Joe, you had great skin. you mean, you were 26. You know, you were, i mean, we were healthy. Yeah, I had, I did not have any issues until you guys met me.
00:16:23
Speaker
Right. In 2010 or so so. that was years. Yeah. So you had, you know, you were great. And, and Joey, the story you told me about was that, you know, because i Joe can't feel. So like, that's the thing, right? You can't feel it. And it's hard for you to look on your own backside. But Joe, tell me the story of, of when, cause you thought you were like, you thought that you had, you were sweating or something because it was the drainage that was kind of alerting you that something was wrong. Yeah. There was, I started noticing that, frankly, my my pants were messed.
00:16:58
Speaker
Mm-hmm. Mm-hmm. And it wasn't it wasn't through the usual channels. And I'm like, what's going on here? So I'd i'd feel back there. I didn't feel anything out of the ordinary. Right. um But-
00:17:10
Speaker
this This drainage was appearing from somewhere hu or seepage, whatever you want to label it. It just was there. And I'm like, this this is not this is not good. Yeah. And how long was that before you came? like when it was like it was a couple of weeks.
00:17:24
Speaker
I mean, I was you know putting up with it because I just figured, oh, it's something weird. It'll just pass. you know i didn't think I didn't think to go and and see anybody about it until it got to the point where it just never seemed to stop.
00:17:39
Speaker
he said, well, I guess I better suck it up and go see somebody. And you had a belly. You had a. um Yeah, that was that was an odd thing.
Wound Care Experiences and Healing
00:17:48
Speaker
um Kids, be very mindful of your zippers.
00:17:53
Speaker
i I left the the tab, the zipper tab was actually up and it got past my the little flap on your pants there. That's right. And it cut the underside of my stomach because...
00:18:08
Speaker
You know, as the years were progressing for most people, you you put on a little bit of weight. And as a sedentary person at that point, you know, I was no longer doing any kind of athletics. I mean, I dabbled in wheelchair sports when I first got disabled. That lasted only maybe four years or so.
00:18:27
Speaker
So I put on a little bit of weight and I noticed, oh, I cut myself. And I'm like, where did they do this at? And then I realized, oh, it was from the zipper. Mm-hmm. And yeah always make sure your zipper's tucked away properly. Yes. So I had this i yeah had this nice cut underneath my stomach. And, of course, I also went and saw somebody about that. And that's what got me actually initially into the system.
00:18:51
Speaker
Yeah, right. As far as care goes. Because my my regular physician was caring for it at that time. I wasn't seeing anybody for wound care. um But as my rear end started to deteriorate, that's when that part portion started.
00:19:07
Speaker
so Right. And I feel like i feel like you Ever since then, i mean, you've had you've had great, you've had stretches where that bum has stayed has stayed intact. Yeah, figured we'd get to that. Yeah, I feel like it's it's just been this this roller coaster for you. And when I say roller coaster, I am not joking. Like, I mean, you know, we we were able to, we got you, did we? We did get you healed, didn't we? Yes. We got that bum healed because we yes we were laughing about, yeah. We transitioned to the surgical.
00:19:41
Speaker
That's right. like we You guys got it to a certain point where it's like, hey, we're it's small enough that we can close this with ah a minor surgery. okay And we should be good. And yeah that that turned out to not be the case, but that's a whole other thing.
00:19:58
Speaker
story Yeah, we'll talk about that because yeah I know we got you to where it was really, in fact, we used to laugh because you know because we we know would take pictures of it. and I mean, yeah, this is a long time ago. So we would show Joe and then we would talk about the various stages of granulation of steak. Like, you know, at what point um yes we were trying to describe. Yes, good, what's bad.
00:20:17
Speaker
What's good, what's bad. You know, is this something you can throw on the grill? And and as as a patient, that's what you want to hear. You want to hear that feedback. thing Am I doing things right? Am I making what you're doing as far as the caregivers want? Am I am i succeeding?
00:20:33
Speaker
You know, that positive feedback is something that I was i was desperate for. Because, you know, as a former, and I don't want to say I was a former athlete, but I mean, I frame a lot of stuff that I went through.
00:20:46
Speaker
as getting ready for a game. You know, there, there's there's ah a head space that you kind of want to get in when you're trying to heal a wound or heal anything really. And it's, it's battle, you know, you've got to be in the right frame of mind.
00:21:00
Speaker
And, you know, I would be to Jen and the other girls, it's like, what, what are we seeing? Am I doing what you want? Am I doing the right stuff? Are we seeing positive results? So, you know, I not to interrupt you, but that's an important thing I think that you just said, because I think is as providers of patients with wounds, we need to understand that that's an important piece where the patient has to be in order to accept the training, the education. They need you need to understand, right? What's going on and where am I at? And is it better? Is it worse? What where what do I have to do?
00:21:37
Speaker
So I think that's a great that's a great comment for people to hear. Absolutely. I can't agree more. I mean, it it works for me. yeah i don't know if it'll work for everybody, but I think you know everybody wants to know if they're doing the right stuff. Are they succeeding?
00:21:53
Speaker
Right. And Joe was so great because he would, he you know, we would say, okay, more protein, this and this and this and that. And he's like, I'm on it. I'm doing this. I'm doing that. I'm doing this. And, you know, and he did progress and, and we, you know, we made some leaps and bounds. I think we had a couple of setbacks, but, um, uh,
00:22:09
Speaker
it Every single thing that we would talk to Joe about, he did. And so it was for us as, and i was we were talking about this prior to recording, or maybe we already recorded it, but you know for us as wound care nurses in a wound care center, Joe came in with such a a light.
00:22:28
Speaker
He came in with such, I mean, we laughed, we laughed hard every time he came in. And he was so willing to be a part of the healing team And so he brought so much light to us as the nurses there. I mean, he brought so much forward momentum for us because we we have so many patients, you know, that either feel helpless or they just don't know or they just are so out of control. and And Joe was like taking control. And and that meant everything to us. Like it just it gave us the strength to move forward to the next patient and the next patient and the next patient.
00:23:08
Speaker
um So, you know, I will always be thankful for Joe for the relationship that he gave to us and that he allowed us in um to to, you know, move him forward and kind of be a part of this journey with him.
00:23:20
Speaker
you You guys are a true healing team is what that sounds like it came down to. But, you know, you know, we're great. Yeah, that's great. That's good. That's awesome. But, you know, I missed it. Or maybe i don't know if you said when you went in that first time and you met Jen, um where were you at with your wound? Was it staged or?
00:23:41
Speaker
think can probably speak to that a little more. i think you were I you were stage three. I know it was pretty bad. so Yeah, you were stage three. I think we even sent, we weren't sure about osteosituation. weren't really sure. um And I don't think, and that's a yeah we can start down that road because there there is a road there. but Well, I think that's an important road too. Yeah, it is. A coccyx wound, right? Is that coccyx or sacral? No, this was issue.
00:24:09
Speaker
Oh, you had an issue? Oh, yeah, yeah, yeah. Right upon my tissue protuber. he was an issue. That's right. And there were actually two. That's right. There was one on each buttock. Yes. That's right. That's tough. Those are tough areas. And the funny thing is, the one, Jen, this is where I think you got the remembrance a little off. The right side healed completely naturally.
00:24:31
Speaker
Oh, yeah, yeah, yeah. Oh, okay yeah the The rights, i I mean, just cooperated and just jumped right in and just healed. And, you know, it went from mildly healing to, hey, Joe, this is this is beefy today.
00:24:46
Speaker
You know, your your butt looks beefy. And we were like, yeah, all right, cool. um And it it skinned over and everything was just great on the right side.
00:24:56
Speaker
The left side was the one that that not so much just did not want to cooperate fully. It would go and go and go and go and go and go. And then all of a sudden it would stop. We'd hit a plateau and we didn't know why. and That's right. We had WoundVac going on We had all sorts of different modalities happening.
00:25:17
Speaker
right Tell me a little bit about the wound. And you were still working. Yes, I'm still going to work every day. Yeah, you're still going to work every day. you know so I'm um um and transferring out of my wheelchair because at that time I was driving four by four Chevy Blazer.
00:25:31
Speaker
So i'm I'm lifting myself out of my wheelchair and behind the wheel and breaking my chair down and putting it in the seat beside me and driving to work and then repeating that to get out of the the vehicle, spending eight hours a day at work.
00:25:46
Speaker
And repeating the cycle to go home. you know And then you know living a life. i mean Visiting with friends and going here and there. and you know Terrorizing the world as I do. and you Life was just good.
00:26:00
Speaker
and Even with this going on. I remember speaking. Because it's St. Patrick's Day tomorrow. When we're recording this. um I remember with a wound vac on my rear end.
00:26:12
Speaker
Going out drinking with a couple of buddies. For St. Patrick's Day. you know with the respect With the wound vac on, you know, and just, you know, having a good time. With a corkscrew bottle?
00:26:23
Speaker
So you can break faster? No, I'm kidding. We there yet. We weren't there yet. That wasn't on the horizon yet. so But I was determined to be as normal as possible going through all of this. because It's like, this is just a thing. I can get through this. i can do this.
00:26:41
Speaker
So it wasn't it wasn't holding me back. Now, should I have probably done the the smart thing in hindsight and and put myself on the shelf?
00:26:55
Speaker
and gone completely bedridden and not done any of that? I don't know. But that wasn't that wasn't on the table. Yeah, and you know, we talked about, and so the group, he had a name for us, but we won't necessarily say the name out loud. Wait, wait, we can. it's i think we should, yeah.
00:27:12
Speaker
We can. I mean, i I called Jen and the team, since theyre they're all women, except for the doctor who was overseeing my treatment, I called them my healing harem.
00:27:25
Speaker
Oh, there you go. And there was no offense taken. We loved being Joe's healing hero. Healing hero. I love it. The HH group. And again, they were all wonderful. So, you know, it felt like these good people. And it's like, yeah, I want i want to be part of this this group.
00:27:45
Speaker
I think he was. So we had all these discussions in the background that Joe didn't know about because we were like, do we what do we do? Do we tell Joe to take time off of work? And I think we even like had some discussions like, do we you know, we got to get him the right wheelchair cushion we have to do. And then I told him the story yesterday about watching him getting in and out of his, because he had a little pickup truck too. And so all of us, you know, it was very important for us, for Joe to be Joe and not take any of those independents. We didn't want to take that away from him at all. Like we, we struggled to try to figure out, okay, what,
00:28:24
Speaker
Do we tell him, you know, he needs to put himself on the shelf or do we not? But we would watch him get in and out of his little pickup truck and we would watch him scooch, scooch over into us and then throw it his wheelchair. And every I used a transfer board to get in the truck. I didn't use one to get out because gravity does most of the work. But...
00:28:44
Speaker
You know, I'm sliding a transfer board underneath me and I'm, you know, scooching up just like you're taught how to do and away we go. I know. And so we're watching that. We're watching him doing all this scooching and we're watching and we're all watching outside the window. and We're all going.
00:29:00
Speaker
Oh, oh, Joe. Oh, but you know, like we we weren't we weren't, it's like, gosh, what's the balance, right? And I think that's the biggest thing with with patients. And it's the biggest thing is that, you know, as wound care patients, we take so much power and autonomy away from our patients. Don't walk on your foot.
00:29:17
Speaker
Don't go to work. Get off your butt. Don't do any of this stuff. So what was the balance, right? What was the balance for us for that? And we did not want, we we struggled.
00:29:28
Speaker
to take all of that away. we just to. another important thing. Absolutely. You have to work with the patients and where they're at, right? In their lives.
00:29:39
Speaker
Because, you know, you don't want to make them incapacitated. I mean, they're, they are already, right? I know. I know. To take away the norm, normality of life, that is wrong. Yeah. You know? Yeah, absolutely. so But I think, yeah.
00:29:53
Speaker
Go ahead. No, no, no, no, no. You go right ahead. No, I was just curious. So you you had that going on. I'm assuming you had the vac on at the time, right? As this scooching around. So did it get better with the vac or did, I mean, I know you went down a road of osteo, but I'm just curious what happened at that point. And at that time, I think the vac was doing exactly what it should have been doing. Okay. Good. We were seeing improvement. Yeah.
00:30:18
Speaker
And ah you guys had reached a point where I think the vac could have come off for a while. In fact, I think it did. You guys kind of cleared me from it. And that was that was a great day because I was able to stop you know lugging this. And it wasn't huge. The little pump is not huge. But I wouldn't have to worry about it anymore. I wouldn't have to worry about having my drape be intact.
00:30:43
Speaker
Right. And if i'm if I'm using words that people don't know, you guys can jump in and help define some of that stuff because I'm sure everybody that this goes out to is going to know what wound effect rape is. um so you know, not having to worry about that was a huge load off my mind because there's yeah there's nothing worse than, you know, doing your thing and all of a sudden you hear the...
00:31:09
Speaker
Of the pump. Stop. yeah And then. there aren aren my And especially if you're at work. Because now now it's like, oh, crap.
00:31:20
Speaker
you know Now it's not doing its thing. and And I was the type of person that I'm at work. That's what I'm supposed to be doing. I'm supposed to be at work. So leaving work for stuff was not something I enjoyed doing. you know I don't like leaving my boss or my team in the lead in the in the lurch.
00:31:39
Speaker
So it's like the last thing I wanted to do was say, I got to go. Now, fortunately, when those sort of things happened, I mean, I do remember once in particular that i the the clinic was only about, gosh, I'd say maybe six miles from where I worked up the expressway. So it was kind of like, I i got to go. i got to go see them. You know, if i if they can get me in, I'm going to go and have this repaired and then I'll be back.
00:32:07
Speaker
And that's what happened. You know, I called the clinic and they said, yeah, we can get you in and see if we can get it reapplied. And over my lunch, I went in The girls, you know, I got up in the chair and flipped me over and took everything off, put brand new back on and patted me on the head and said, good boy, go back to work. And away I went.
00:32:31
Speaker
You know, Bob's your uncle. Happy day. So. That's, I was, i was very lucky that I had good caregivers that understood where i was at.
00:32:43
Speaker
you know, my goal. And you had access too. Yeah. And and I had access. And I had access. That's yeah. and And the other thing that I think is real important is I had a great support structure in my private life.
00:32:55
Speaker
I had supportive. Yeah. I had supportive parents that were, you know, they didn't want this to happen to me. They didn't want this going on. So what, what do we need to do to help you get through it?
00:33:08
Speaker
You know, and they, they were always some of my, my best cheerleaders anyway, in my entire life. So, You know, being being back home and not under the circumstances that anybody wants to to be under, to go through this on top of that, I was very lucky.
Support System and Independence
00:33:25
Speaker
um So, i mean, that's yeah that's important. And a lot of people don't have that that support structure in their private life. They're usually relying 100% on their caregivers to to help with that kind of stuff. And I was very fortunate.
00:33:42
Speaker
So... That's very, very true. Now, so fast forward. So for that ischial wound that didn't close, was that the one then that was that the first rotational flap?
00:33:55
Speaker
yeah Okay. all right. Well, let's talk about that a little bit because that was, boy oh boy, that was a journey. Yes. So, so after I left the the girls at the at the clinic and got transitioned to the surgical team at UTMCO ah for the surgery and the the doctor who did that procedure, she was wonderful.
00:34:15
Speaker
I don't know if I should be mentioning names, but let's put it this way. She was great. um She was very upfront, very clear about everything. And even leading up to the surgery itself, we were still undergoing treatment. I was, I was getting,
00:34:28
Speaker
different granulated materials put into the wound to help speed healing. Because if we could avoid the surgery, that would have been an ideal. But as we were going, it looked more and more like the surgery was going to have to be the option.
00:34:43
Speaker
Um, so it was broached to me to have a partial rotational flap done on my left buttock. And I don't know if everybody knows really what that is, but as I understood it at the time, they were going to basically slice me open on my left buttock and take some of the material from my underside of my left thigh and rotate that up and basically reconstruct my rear end, my butt cheek.
00:35:13
Speaker
And that was going to put me out of commission for at least six weeks. You know, so once, yeah, once the surgery is done, it's going to take a six week window to to completely heal.
00:35:26
Speaker
And that involved being in a, a Clinotron bed, you know, the big sand, sand flotation, which was an experience in itself.
00:35:38
Speaker
ah I can imagine, man. Yeah. they're they're They're very hot, they're very noisy, and yes they're very lonely because it's this big, I call it the bassinet of doom because that's what it looks like. It looks like a big bathtub.
00:35:54
Speaker
I remember this now. the bat's a nice do yeah The nice thing about it is is i I wasn't on my stomach for this entire time. I wasn't being rotated. the The full flotation of the sand does its job. And I was really kind of comfortable.
00:36:09
Speaker
But it's not fun. Yeah, and that was six weeks. Six solid weeks. yeah but Was that in your house? Did they bring that to your house? No, I was at UTMCO for that entire six-week. Oh, you were. Oh, you're in there. Oh, my gosh. Yep, yep. Yeah. It's really kind of cost prohibitive to rent a Clinotron bed for a home.
00:36:32
Speaker
i mean, it's it's very rare, as far as I know, to have that happen. There are very special cases that require that sort of... That's true. That's true. That's true. I have seen it though. My private was not going to pay for something like that. Very expensive, for sure. That's a big no. Yeah, that's a big no. That's a big no. So parallel to the healing portion is, you know, there's a big team that's working with you. There's the surgical team and there is the infectious disease team.
00:37:09
Speaker
You know, they they're monitoring or they should be monitoring any kind of infection potential going on in and around the wound as it's healing.
00:37:22
Speaker
The gentleman that I had working the infectious disease angle, and I'll just be honest, dropped the ball. um I think he made some assumptions that, you know, that did not pan out properly.
00:37:38
Speaker
I was on antibiotic the entire time, but I don't think it was the right antibiotic for what was really going on. I don't think it was identified. So, of course, the proper decisions weren't made.
00:37:49
Speaker
As all this is going on and the wound is closing up and as as I'm getting cleared for each stage, you know, I can start sitting. i can start getting back in my chair. i can start doing some physical stuff to to get ready to get out and go home and get back to life.
00:38:04
Speaker
All the while underneath here, there's the infection cooking way in the background.
00:38:13
Speaker
Roughly eight to 12 weeks post-surgery. I'm getting ready to transfer out of the driver's seat. And at this point, I've i've gotten rid of, at the time, my Kia that I was driving, my four-wheel drive vehicle, the truck.
00:38:31
Speaker
And i transitioned into a van. My folks were like, you know, you you really should get a van. Just suck it up and get a van. Yeah. And I can go into this as a side tangent as to why I resisted fans for so long. But that's really kind of not the important part. So I'm behind the wheel of the van and I'm getting ready to get into my wheelchair to get out and go in the house after a day of work.
00:38:56
Speaker
And I'm like wet. ah Oh, boy. Here we go again. And I'm thinking, did and I'm going to be blunt, did I pee? because yeah that Yeah. You know, yeah ice straight calf three, four times a day. And sometimes at work, I didn't i didn't calf all the time.
00:39:14
Speaker
Because it's like it takes me away from something or I'm involved in something and I don't have, them you know, 15 minutes to go and take care of this. So I would just kind of say, I'm just going to stop drinking the rest of the day and I'll be all right. like Because that's how that goes, Joe. Because that's a. but What's that? Because I can say all the clinicians that are listening and are going. Yeah, they're probably pulling their hair out.
00:39:37
Speaker
you know and And I'm sorry, but this is reality. This is the way you live. i mean, things get missed and things you you take shortcuts. and It's not always the best in hindsight, but you don't really realize that as you're living.
00:39:53
Speaker
know No, but I think it's great. I mean, we need to hear this. Like, you have to live your life. You're at work. The idea of having you stop your life to go self-cath is... The little voice in the back of your head is saying, you should be cathing.
00:40:04
Speaker
You know, it's reminding you, but you're you're consciously ignoring it to do whatever it is you're engaged in at the moment. That's reality. And know that's very real. Absolutely.
00:40:15
Speaker
You know, I know I'm not the only person that has done this. oh sure not No, you are not. So anyway, so i'm'm I'm freaking out at this point. You know, it's like, where is this coming from?
00:40:27
Speaker
You know, i'm I'm going through all the motions. I'm trying to figure it out myself. And i'm like, what's going on here? in the house and I reluctantly tell my folks, oh, I think I think there's a problem.
00:40:38
Speaker
Again. And they're there, of course, they were actually more upset and let down than I was. You know, because they're they're immediately thinking, oh, here we go again. What's what's what's he going to have to go through now?
00:40:51
Speaker
So I immediately reached out, found out you know who I could see, went went back to my doctorate, UTMCO, and I said, we we need to be seeing something going on here.
00:41:03
Speaker
Went in for an exam, and the determination was made by her and her her folks that there was an infection that did not get seen and it completely discombobulated everything.
00:41:18
Speaker
It basically undid the surgery. you Yeah. So there was an underlying osteomyelitis, right, Joe? There was an underlying bone infection that was not completely caught, that wasn't caught. And wasn't treated. And wasn't treated the way it needed to be treated prior to doing that rotational flap, which was... Or even even during the surgery and the recovery. Right. Yeah.
00:41:40
Speaker
So it's percolating this entire time. Oh my gosh. And the decision was was made or the the recommendation was made. You need to have the surgery redone and we need to do a full flap.
00:41:54
Speaker
Oh. And you guys, you know what a full flap is. do you Do you want to tell the audience what a full flap is or I can do it? I think you should do it. I think they should hear it from you. I think that would be great. So here's what I was presented with.
00:42:07
Speaker
Joe, we're going to take your left leg off at the hip and we're going to leave your, your what muscle group is it?
Medical Decisions and Surgeries
00:42:15
Speaker
It's it's the top of your thigh. um We're going to leave those, but we're going to use that and fold it under and do a ah true flap and build a butt cheek with the your top thigh muscles.
00:42:30
Speaker
And I thought about that for a few minutes and went, you're going to take my leg Right. Now, remember, I'm a T910 paraplegic. I don't have any function or form or feeling or anything in my legs, but they're mine. Right. I came into the world with them.
00:42:50
Speaker
I want to go out with them. So the last thing I wanted to do was sacrifice a leg for this. man. the big thing in my head was, do I have to do this? Is there another way They were very adamant at UT that, no, this is what's got to be done. It's the only path. It's the only thing that can be done.
00:43:14
Speaker
When do you want to do it? We can schedule it and we can get it done and you can start the healing process all over again. you know, think about it another six to eight weeks. Stuck in the tub of doom. Or some other torture device that masquerades as medical care.
00:43:33
Speaker
you know i was like, what what do I want to do? so Of course, my first plan of attack was better go home and talk about it. So I went home and I said, here's here's what they want to do. and My dad kind of did one of these numbers.
00:43:48
Speaker
He said, I think we better get a second opinion. Yeah. And so he suggested, he says, you know, U of M is pretty cool and they're just up the road because, I mean, I only live right across the border in Michigan and Ann Arbor 20 minutes away.
00:44:05
Speaker
And he said, let's let's find somebody up there we can talk to. So I did a little bit of research and found a name to contact, and it was a gentleman in their plastics group.
00:44:17
Speaker
ah And I made an appointment for a consultation, went up and saw this jack this gentleman, and took my parents with me because I thought, well, they need to be in the loop too because, frankly, this affects them as much as it affects me.
00:44:33
Speaker
Uh, so we're, we're in, he put, has me get on ah an exam table and I roll over and, and he checks everything out. I roll back over, sit up and we're talking and he says, here's the good news.
00:44:48
Speaker
I can fix this and you don't have to lose your leg. I'm like, really? And my dad immediately was just, I mean, he was giddy. ah My mom, I think, was more relieved than anything. i mean, the she was just quiet and like, thank God.
00:45:05
Speaker
um And my dad was ecstatic. I was intrigued. And I said, so what what is going to have to happen? He goes, well, here's the deal. It's going to be a big commitment on your part. And he says, okay, what what does a commitment mean? He goes, it's going to require two surgeries.
00:45:23
Speaker
like, oh, okay. He says, the first surgery we're going to go in and we're going to clean your wound bed out. We're going to get it as pristine as possible. If we find anything that's that's necrotic or compromised in any way, we're going to get rid of it and start fresh.
00:45:43
Speaker
<unk> I've got a ah cancer doctor that I'm friends with that helps me do these sort of things. She's an expert on bad tissue. And she's going to be on on the team while we're in you.
00:45:56
Speaker
And she's going to help identify stuff. And we're going to clean it out. If we have to resection some of your thigh bone, we will. um And we'll go from there.
00:46:07
Speaker
And you will heal for a number of weeks. And we'll go back in once we determine your, your clean and we'll rebuild the area.
00:46:18
Speaker
I'm like, Oh, okay. He goes, so what we'll do is we will, we'll sequester you here in Ann Arbor at some rehab facility up here. And that's where you'll be in between surgeries.
00:46:31
Speaker
I'm like, okay, so I'm going be moving to Ann Arbor for how long? Oh, probably six to eight weeks between surgeries. Okay.
00:46:43
Speaker
Interesting. Can I think about it? Yeah, absolutely. Think about it because it's it's going to require a big commitment on your part. Like, okay. um So we went home, immediately started an antibiotic regimen you know to prepare.
00:46:58
Speaker
A couple of MRIs later to chart progress in that regard and scheduled the first surgery in like, I think it was like March. Can't remember the year exactly, but it was, i think it was almost 10 to 11 years ago.
00:47:14
Speaker
Had that first surgery and everything went swimmingly. When the the two doctors were in there, they kind of recognized the fact that it wasn't as compromised as they feared.
00:47:27
Speaker
Uh, nothing had to be cut out and removed. They basically just went in as he put it with microplanes and and other grading material and just, you know, sanded down all my bone to, to new, new material. Essentially, they just took all the crap off and we called that a day.
00:47:48
Speaker
So, you know, got locked away in Ann Arbor for my, my time. The next surgery got scheduled and I went in and they rebuilt everything. And as the doctor put it, he says, I shouldn't have to ever see you again.
00:48:03
Speaker
wow It was like, awesome. And, i you know, I had follow-up visits, of course. And when he finally released me, that's what he said. He says, I i should not have to see you ever again.
00:48:14
Speaker
That's amazing. He's since retired, so I'll never get to see him again anyway. but Yeah, right. But, I mean, it was by all measures a complete success.
00:48:26
Speaker
And it stayed a success. Yeah. So fast forward to 10 years, yeah yeah post-surgery, my life is just going gangbusters. I'm um having personal success. I'm having professional success.
00:48:40
Speaker
Things are just you know chugging along. you know Life is good. And you've had no wounds since then? i've had Well, no, no, no. i yeah Up to this point, I've had up to no issues at all. no issues. um That's amazing. Yeah. just what it test Just before COVID you know changed the world, I i lost my parents.
00:49:06
Speaker
they They passed away. oh Oh. So because this is this is important, it all factors into this. um At that time, again, I'm living in my child's home, helping take care of them in their recent ending years.
00:49:23
Speaker
Because my mother had a stroke, unbeknownst to us. She had ah identified a brain tumor. And in the surgery to remove the tumor, she had a stroke in the recovery room. which left her paralyzed on the right side. So fortunately I was there, you know, living there and I was able to help take care of her with my dad. Cause my dad was adamant about her not going to any kind of home, you know, and you know, she's staying here with us. I'm like, I'm, I'm all in, you know, whatever we need to do, I'm there.
00:49:52
Speaker
Um, so I'm balancing work, taking, helping take care of my mom. And at the time I didn't know this cause my dad is one of those old school silent generation people. that you're not going to know any of his health issues unless it's horrible.
Family Impact and Personal Growth
00:50:07
Speaker
And he's already had a couple of heart attacks and a few stents put in. No big deal. I mean, happens every day in America. um But he had ended up he ended up being diagnosed with prostate cancer.
00:50:20
Speaker
And he was being treated. He was having a subcutaneous ah what radiation pellet or whatever. I don't know the everything about it. But he was he was doing that. But when my mom went down, decided that it was more important for him to be home taking care of her.
00:50:40
Speaker
So he stopped. and and And while I'm in Ann Arbor for my second surgery recovery, my dad had to have his hip replaced. So so he so i one day while I'm in rehab doing stuff, I get a video from my sister. Hey, look, dad had the surgery in the morning and he's up walking around that afternoon. you know Where it used to be, it used to be you didn't do that. Now that's yeah normal procedure. So I was like, get him, dad. Yeah.
00:51:08
Speaker
Um, and, but he still needed to have rehab after that go on going to make sure that things didn't stiffen up and do all the bad stuff. Well, he stopped going to that too. And it was ironic because the rehab hospital my mom was at very briefly was at flower at flower hospital in Sylvania.
00:51:28
Speaker
And his physical therapy was across the parking lot at flower hospital proper. So while my mom is across the parking lot, he would get up in the morning, go see my mom and sit with her all day.
00:51:41
Speaker
Never once went over across the parking lot for his, for his physical therapy and came back. He would just not go. Be with her the whole time. Yeah. He was with her 24 hours a day, if he could be.
00:51:53
Speaker
And that started to take its toll on his mobility. So now, you know, I'm in a wheelchair My dad starts struggling with mobility issues. And it he was not he was not nearly as prepared for it as I was.
00:52:11
Speaker
I mean, he was he was an athlete too, but he's at this point 70 some years old. Right, he's right, exactly. He's just not able to do what he used to do. And it really started to wear on him. And then you combine that with the fact that he stopped his cancer treatment unbeknownst to any of us.
00:52:29
Speaker
he So you guys didn't know he did that? We did not know. Oh. Until he had an episode one evening that necessitated him going to the emergency room. And that's when my sister, who went with him, found out that he had stopped his treatment and it was starting to take its toll.
00:52:46
Speaker
And in fact, some follow-up visits, long story short, some follow-up visits, he... found out that the cancer was starting to spread to his brain. And we we knew then that, well, that dad doesn't have much longer.
00:52:59
Speaker
So he entered hospice at home and he was there with my mom the entire time and then passed away in, God, was it May, I think of that year.
00:53:10
Speaker
It was before COVID, the year before COVID. So he passed away in May and my mom didn't stay much longer after that. I mean, you know, the the old ad, she died, ever broken her.
00:53:21
Speaker
right that's That's the bottom line. yeah they didn't want They didn't want to be a part. So anyway, so at that point, I'm like, okay, well, what's what's going on? So i'm I'm there at the house, at the farm, and through the process of dealing with the estate and everything, um my sister and I kind of talked about, well, what do we want to do? Our farm is a 40-acre farm, and the house sits on seven.
00:53:47
Speaker
So it's like, here's a three-story house that I can only access one floor of. And it's like, this is not practical for me. And my my dad has always been one of those, like, someday you should build a house that's perfect for you.
00:54:03
Speaker
you know, get the things in it that you need and have it done the way you need it to have it done to live your life comfortably. So I've been kicking this idea around for a while, you know, doing up some drawings. Because I i did drafting in high school. i'm I'm good with that kind of stuff. And started working out what I wanted in a house.
00:54:22
Speaker
and talked it over with my sister. I said, so what are we going to do? She well, I want the house. I want the farm. Cause they were living in Toledo at the time. And she said, I want out. I'm like, okay, here's what we'll do. You take the house and the farm and I'll take the financial part of the estate and I will use some of my money and, and build a house.
00:54:42
Speaker
Okay. Sounds good. So that's what we did. No fighting, no issues. It's just, that's what we did. Um, so I started the process to build a house and that started pretty, pretty painlessly.
00:54:59
Speaker
And in about eight weeks, no, not eight weeks, that it wasn't even eight months, I had a ah house built. So I, you know, moved into my house and then all of a sudden after a year, I started to gain weight and I mean, precipitously gain weight. I didn't see it. Everybody else did, but I didn't. I ah had some time where I was literally working from my bed at home because at this time, COVID has got us all working from home.
00:55:30
Speaker
And this is post-COVID. So i had nothing to do with COVID, what happened to me. It was just something something went kablooey. And i I was fighting this infection, it seemed. And it was always a low-level sort of thing. But it wasn't affecting me to my activity, you know?
00:55:51
Speaker
One day my sister gets ahold of my college buddies and says, it's time for an intervention. Something's wrong with Joe and he doesn't see it. So get down here. Now I went to school in Michigan and all my buddies are from the Detroit area and various places. So they all came down. They showed up at my house in mass Wow. And they' they all appeared in my bedroom.
00:56:13
Speaker
I mean, I didn't i didn't know this was happening. All of a sudden, you know, two there's two ways to get to my bedroom in my house. then One through the living room and one through a closet and a bathroom and whatnot. and They all showed up.
00:56:26
Speaker
And i'm like, what the hell's going on here? And my sister says, you're going to the hospital right now. We've already called the ambulance. You're going. And I'm like, why?
00:56:37
Speaker
You don't see it. youre You are huge. I had ballooned up to about 400 pounds. i't know Oh my gosh, Joe. I didn't know that was 400 pounds. Yeah.
00:56:49
Speaker
ah But again, it was so gradual and so slow. I did not see it. I just didn't know. you know The only issue that I had is it was hard for me to get in and out of the chair, you know to transfer from the bed to the chair and in and out of the van. That was it. But I figured I'm older. I'm getting a little weaker. you know I'm not as active as I was.
00:57:12
Speaker
No, it was bigger. So here I go off to the hospital. And while I'm there figuring out what is happening to me, um the immobility of the whole situation at the hospital started to eat away it my rear end again.
Health Challenges and Proactivity
00:57:33
Speaker
you know And as we know, pressure sores work from the inside out, and you don't know it's there until it's there.
00:57:41
Speaker
And that's what happened. So, you know. But Joe, you were sick. I was. mean, let's be fair. i You actually are a little more knowledgeable about how sick I was than I actually did.
00:57:52
Speaker
Yes, he was um like he was ICU septic, ah kidneys failing, and that's you know why he was putting on those weight. He just didn't realize it. And um I remember getting a message from his sister, and um it was about a week of touch and go. i wasn't We were not sure if Joe was going to actually make it.
00:58:15
Speaker
like We really weren't sure. Mm-mm. I mean, it was very scary part of life. i mean, very scary moment. So anyway, was able to make the recovery while I was there as far as the septic situation goes. And they cleared me to to go to a step-down unit.
00:58:36
Speaker
And while I was at the step-down unit, they you know they were mindful of the the pressure sore building up. And we were treating that. They were as aggressive as they could be.
00:58:48
Speaker
um But again, you're still kind of limited with what you're going to be able to do. um It was recommended that I go to a different facility for physical rehab because they didn't really have a good physical rehab department at this at this place.
00:59:07
Speaker
So we we looked at a couple places and made a choice based on proximity rather than quality of facility, if you know what I mean. Mm-hmm.
00:59:18
Speaker
While I was at this place and I was being assured that, well, we're going to get you an air mattress. We're going to get everything that you need to help get you healed from this rear end situation on top of getting you your dialysis every day and whatever else you need. Because we're now doing dialysis. Yes. So, yeah. Wow. That's awesome.
00:59:40
Speaker
So while I'm there at this facility, the the wound is is is descending even further into anarchy. And it got to a point where I ended up going slightly septic almost again, having to go back to the hospital.
00:59:58
Speaker
So here I go back to the hospital. um They treated me again for, I think I was there for three weeks or three additional weeks. And we we chose a different facility for rehab at that point.
01:00:14
Speaker
Um, got that all cleared up and ended up there. And I was out in a facility out in Oregon, Ohio for another, think it was 12 weeks. Yeah. That's when I was having my rear end treated there as well. Went back on a wound vac for a while.
01:00:31
Speaker
um, made enough progress that it was kind of like determined, you know, because here's the, here's the, the battle that's horrible about healthcare insurance.
01:00:43
Speaker
um I, I, I love insurance and I hate insurance. Because your your care is not in your hands and it's not in your doctor's hands. It's in it's in a bean counter's hands.
01:00:55
Speaker
And if they decide for whatever reason that they've had enough of paying for whatever treatment is being recommended, they'll just stop. They'll just say, nope, you're done.
01:01:07
Speaker
We've determined that you've you've you've healed enough. Right. And that's what happened. Yeah. So then they said, you're done. You have to go home now, period. Right. So I was like, that's fine. I'd rather be home anyway, because frankly, this place sucks.
01:01:24
Speaker
You know, the food's awful. The the the people are crazy. um And I'm not just talking about the fellow residents. I'm talking about the staff. I mean, they're just, they're just nuts. Yeah.
01:01:37
Speaker
um So I want to cover a couple of things, though. So fast forward, you know you had a leg wound, too, because, you know, his legs were like, you know, balloons. Right. So there was obviously there was, ah you know, the water goes out the path of least resistance. So he had some leg wounds as well and and and use some compression and got those healed up. Well, the funny thing is, is they kind of think that that's where the infection found its way. Oh, the leg is the leg.
01:01:59
Speaker
Really? Yeah. They think that might have been the path. is that you know Really? Well, it wasn't good. It was ugly. When I was seeping all of this, what what I don't know what the fluid is. Is it lymphatic fluid when you go septic like that?
01:02:13
Speaker
<unk>s There's a whole host of things there. but Well, that's what they think is that there was a burst somewhere or there was a break in the skin and infection got in in that way. That was its path and that's where it settled and started cook.
01:02:24
Speaker
Yeah. Wow. Yeah. So that was that was a that was not that was not a pretty one. But yeah I mean, so fast forward to today, you know, he is, again, almost healed. He is still having home health is coming out and managing it. He's still seeing the wound care center. And, you know, so when we talked about this, we were um talking about, um you know,
01:02:47
Speaker
when we were trying to coordinate this, we're coordinating it around his home health and coordinating around his dialysis. But a couple of things, Joe, that I want to cover real quick toward the end of this is overall,
01:02:59
Speaker
um navigating the healthcare system overall, what are some points that you would love, I mean, to briefly talk about, or what are some things that, that you, what are some advice that you can give to fellow pressure injury patients? What can you tell them from your perspective? What, what do you think that you want them to hear?
01:03:19
Speaker
Be aggressive and be vigilant in your own care. And i yeah I mean with your caregivers, but also with your insurance. if if you're If you're on Medicaid or if you have private insurance, it doesn't matter.
01:03:34
Speaker
Be aggressive. If they want to deny something, fight. you know Don't be afraid of confrontation in that regard because you are going to be your best advocate. Nobody else will.
01:03:48
Speaker
And that's really with all your caregivers too. I mean, be your best advocate across the board. Yes. Be be plugged in and demonstrate that, you know, even if you don't have the knowledge that that your caregiver might, you probably have just as much, if not more, of what your situation is. And don't be afraid to be assertive about it.
01:04:11
Speaker
If something doesn't seem right in your care, Call them out. Say, hey, I'm not comfortable in this. But it also helps that you develop a good relationship with whoever is the overriding treatment provider.
01:04:26
Speaker
Like in my case, this would be the the current wound care clinic that I see for what's what's left of my wounds. Because you know I actually had three that are three or four that I was being treated at or treated for. i had the leg wound.
01:04:42
Speaker
I have a ah wound in my perineal and scrotal area. And I had the ischial side on the left that had opened up again.
01:04:52
Speaker
know, this is this is the one that's been, you know, repaired twice surgically. So, you know, there's there's no more material to move around there. So surgery will not be an option to heal this one.
01:05:03
Speaker
Right. um But you did get it healed. It is healed. It is healed. It currently. 100% healed. Oh, good. Currently healed. So we are very excited. We are very happy about that. Yes. And you're on the tail end. Yeah. Literally and figuratively. Oh, my gosh. We are literally on the tail end. I did not do it on purpose. It's a horrible place to have a wound, let me tell you. It is. It's not ideal conditions for for healing. Anything. Yeah. Yeah. No. In that area. No. And also, I mean, dignity. I mean, you know, and we, you know, when you first came to see us, you're, you're like in your very early forties, if not late thirties. And, yeah and you've got a butt wound. There's a wound on your butt.
01:05:39
Speaker
Yep. And well, but you but you guys learned early on that dignity is out the window for me at this point. I have no shame because but there's a, there's a little aside when I was originally in acute for the paralysis in 94, 95,
01:05:57
Speaker
um I kind of got left in a hallway for waiting for an um MRI and the sheet had moved and I'm buck naked to the world and I don't know it.
01:06:07
Speaker
And I'm dozing off on this gurney in a hallway waiting to get an MRI with the sheet i practically on the floor. Oh, Joe. Yeah. So somebody finally kind of ambled through this hallway and and freaked out because here I am, you know, hello, birthday suit completely. And they're like, oh, we got to fix this. So they're like new sheets and cover me up and they're apologizing and, you know, just beside themselves with grief about it. And I'm like, what did it what did I miss? So I kind of got real cool with people screw up every day and crap happens.
01:06:43
Speaker
There's no use of getting bent out of shape about certain things because it it just embarrasses you and embarrasses them and nobody's happy. So yeah, dignity about a lot of stuff in this world of being disabled, I'm totally cool with.
01:06:58
Speaker
You're like, it's out the window, there you go. I'm not going to sweat it because it could be worse. That's a great perspective because it's true. This is temporary. I treat everything about my disability, even though it's permanent, I treat it as temporary.
01:07:14
Speaker
You know, it's just what I'm going through today. You know, this is like, I think I've said this to Jen numerous times over the years and anybody who wants to meet me and talk to me about it.
01:07:28
Speaker
Um, I'm not letting the chair define me. I'm, I'm in it. and I use it. I have to, I have no choice, but it is not who I am. I'm still six to 220, 240 pounds of former, former lineman being the local weirdo, dumb ass comic book collector jerk that I always was.
01:07:52
Speaker
you know i mean i'm I'm not letting it change me. I'm just shorter. I just can't reach crap on the wheel thats top shelf. and He's on wheels. yeah I can't climb ladders. you know Stairs intimidate me. That's about as far as it goes.
01:08:07
Speaker
Everything else is normal business as usual. Right. And I have to say, Joe, that was so important. And, and you know, I i always try to articulate this. For us at the Wound Care Center, Joe changed us fundamentally about how we looked at, you know, as nurses, we get into so much nurse mode, nurse mode, nurse mode, nurse mode, wheelchair, offloading, protein, that sometimes we forget that there is a human being in that chair.
Human Experience and Patient Care
01:08:38
Speaker
And a lot of things affect that human being so much. And so Joe brought that human component of disability to the forefront to all of us, to the point to where we would get like, we would walk around and we would say, well, gosh, like if Joe wanted to go to the beach, like how do we get Joe to the water? And so, you know, like it's, so Joe made,
01:09:03
Speaker
disability in the wheelchair, he made it absolutely human and took all of the other pieces out of it, which, and then his attitude about, we're going to keep going, we're going to keep going, we're going to keep healing. And I think that's the fundamental piece of this story that I really, really want people to hear is that this has been a journey.
01:09:22
Speaker
but And it's not over yet. Right, right. I accept that. i mean, I've been very fortunate You know, again, i'll go back 20 years with no issues whatsoever, which is frankly unheard of in the wheelchair community.
01:09:40
Speaker
I mean, it's very rare. i It's almost almost impossible to get through even most people's first years in a wheelchair without some sort of pressure issue. So here's some more things to think about.
01:09:54
Speaker
Your, your, your cushioning system is important. Your chair is important, you know, get with a good provider, You know, cover your bases, do the things that you're supposed to do as a consumer.
01:10:08
Speaker
You know, you don't buy a car just because it looks nice. You buy a car because it does what you want it do. You should treat your wheelchair the same way. And you should make sure that you're on ah on a cushion that is going to give you net pluses rather than net minuses.
01:10:26
Speaker
Yeah, that makes sense. having access to seating clinics, if if your facility, wherever you're doing your your rehab time, if if they've got a wheelchair provider that does a seating clinic, get in it.
01:10:40
Speaker
you know Find out what your best options are and grab a hold of it because that's going to affect you greatly. um my My first cushions were great for that point in my life.
01:10:55
Speaker
um and And get it reevaluated if if your provide your insurance provider allows you to get, let's say, a new wheelchair every five years. And I believe Medicare Medicaid is that way. Yep, it is. um And they treat the cushion in the chair as one system.
01:11:13
Speaker
You can't get one without the other. And this is something I learned from my current nurse that comes in and does my dressing changes. She has a patient that is just basically needing a new cushion and they, they won't provide,
01:11:27
Speaker
ah Just a cushion. they They want the full ticket. And the person's chair is just recently new. It's like only two years old. So you fight to get that kind of stuff. And unfortunately, if that's the situation, you're going to probably out of be out of pocket in that situation. And a lot of people can't afford that.
01:11:48
Speaker
You know, cushions, the cushion that I'm currently on right now, and not to digress too far, is a Rojo hybrid cushion. So it's it's got an air component and a foam type component in it.
01:12:02
Speaker
And that works for me because the way I transfer and the you my my lifestyle. um It's a $400 cushion. That's not cheap. Yeah, they're not cheap. Yeah, no, they're not Not everybody can afford that.
01:12:16
Speaker
Yeah, out of pocket. um So so i personally, I think that there need to be some changes fundamentally as far as that goes for insurance. Absolutely. Well, one more thing, Joe, just if you could give, if you could give, since you have met clinicians from across the spectrum, If you could give a couple of words of advice for us, what would you want us to hear from your perspective as being a wound care patient for all of these years? What are what are some what are some Joe's pearls of wisdom for clinicians? Gee, no pressure.
01:12:51
Speaker
um it I would have to think that the the biggest takeaway that
01:13:02
Speaker
Don't treat a patient like, wait how do I phrase this?
01:13:11
Speaker
Try not to treat a patient like a slab of meat that you're dealing with. You said it, Jen. We're people. yeah get Take a little effort and get to know the person and and build the person up while you're treating them.
01:13:31
Speaker
keep Keep them on as positive a path as you can. You know, some some of us are going to require a little more effort than others. I mean, I'm certainly not intending to to brag or come off as some sort of all-knowing.
01:13:49
Speaker
But I know that I'm not like the next guy. You know, again, we talk about attitude and and the way I approach things. That's just the way I was raised and wired.
01:14:01
Speaker
You know, do your best in everything you do at all times. If you fail, you fail. Big deal. Get up, dust yourself off, and try again. I mean, that's that's the way we grow.
01:14:13
Speaker
a lot of people don't have that tool set in their toolboxes. So as caregivers, if you can start to build that up in those opportunities that you have interacting with a patient,
01:14:30
Speaker
It's, it's important because sometimes all people need is just a little bit of positive encouragement and they, they can start to to walk and run the journey themselves.
01:14:41
Speaker
They don't need to have the full tool set. They just need to have a start. They need one screwdriver. Yeah. I mean, that's the best way I can put it because I went through it when I was in rehab. i you i had I had people there at the same time. There were some some people younger than me that were going through traumatic injuries and learning how to adjust. There were some people that were older and some had the tools and the wherewithal to adapt. and Some didn't.
01:15:12
Speaker
And I will admit that the the ones who didn't frustrated me greatly, because again, I'm young. you know i don't want to say I know it all. and i think I know it all. But there's a certain mindset that you have that if I can do this, anybody can do this. right no Not really.
01:15:28
Speaker
And I had to take some steps back interacting with my fellow, I like to say, it my fellow gimps. You know, I mean, yeah I had to know that my heavy handed approach works for me, but not for the next guy. So tone it down a little.
01:15:43
Speaker
But as caregivers, you you guys are on the front line. You know, you guys are in the trenches every day, multiple times a day. And I know it's probably hard. Bedside manner for a lot of caregivers is not something you guys learn clinically.
01:16:01
Speaker
But if if you're in health care to care, know, then you've got it. You know what to do. It's just, sometimes it's hard. Yeah, absolutely. But that's, that's the biggest thing I would, I would say.
01:16:16
Speaker
but that's wonderful. Well, i I have to say, Joe, I was so excited to have you on and and I'm so happy that you got to share your insights with the world.
01:16:27
Speaker
i mean, i'm I'm so happy that we got to do this. The whole world. yeah i'm And I think that you have some, I mean, I think we've taken away so many fantastic little pearls of knowledge from you, Joe. And I know that maybe at one point you and I want to do something in person because in person, We can definitely go off the rails. I will say that much for sure. that would definitely be wide ranging.
01:16:50
Speaker
That would be wide. Yes, correct. But again, you know thank you so much for sharing this incredible journey that you have been on and you are going to continue to be on the journey. And what I love, Joe, is that you allow me to be a part of your journey.
01:17:04
Speaker
And and and then thank you. I love that. And now we're going to bring Therese in and bring Therese a part of your journey. That's right. Yeah. I know. Now she's a part of it. The more the merrier. The more the merrier. The whole world. We just brought the whole world in you. I mean, here's one more thing about it.
01:17:22
Speaker
You're part of a team at this point. you're You're part of my team. And I'm part of your team. You know? And... what's the phrase that is big in corporate America today? Teamwork makes the dream work.
01:17:37
Speaker
Oh. You know, let's let's jump on a cliche right away, right? Right away, yeah. um But it's but ah unfortunately, it's true. Yeah. I mean, there is no I in team. I can't do all of this stuff alone. I can get so far by myself, but I am going to need you, you know, as a caregiver. I'm going to need your best effort, and consequently, I should be giving you my best effort.
01:18:03
Speaker
I love that. I love that. And with that, with that, Joe, I am going to thank you so much for joining us today on Healing by Design.
Conclusion and Gratitude
01:18:12
Speaker
Therese, as always, it has been a lovely time.
01:18:16
Speaker
And um listeners, thank you so much for joining us. If you ever have any questions or ever have any comments, please, you know, let us know at Healing by Design. Other than that, we will see you on the next Healing by Design podcast. Thank you guys so much. Thank you. you And that's a wrap on today's episode. Thank you so much for spending time with us. These conversations are why we do this, and we don't take it lightly that you chose to listen to us today. Before we head out, just a reminder. Everything you heard today is meant to educate, not to replace the advice of your own healthcare care provider. Please don't make medical decisions based on what you hear on this show. Your provider is the right person for that. Our guests share their own opinions and experiences. not the official positions of POSIC or anyone who supports this show.
01:19:04
Speaker
If you're dealing with a wound care emergency, please get to someone who can help you right away. And if today's episode was useful, subscribe and share it with someone in your corner of wound care.
01:19:15
Speaker
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