Helping The Patient Throughout A Wound Care Journey

Brian McCurdy:
Hi, welcome to Today's Wound Clinic Podcast. I'm Brian McCurdy, the managing editor of TWC. And with me today are Morgan McCoy and Dr. Caroline Fife. They are going to be talking about Morgan's experience with an amputation as part of our series on The Patient Experience. So welcome. Would you like to tell me a little bit about your story?

Morgan McCoy:
Yeah, for sure. So in October of 2018, I was diagnosed with sudden onset ulcerative colitis. I was still in college at the time, so doing a lot of work to manage those symptoms and try to get that under control and, throughout that process, trying different medications and seeing what worked and what didn't work while still also being a full-time college student.

And then, things kind of took a turn in 2019. I got really, really sick from my ulcerative colitis symptoms. I lost about 30 pounds in the span of a week. And at that point, my parents decided it would be beneficial to pull me out of school and bring me back to Houston to see my GI here in Houston.

And during that process, I ended up with a blood clot in my left leg and all the way across my abdomen ending me up in the ICU. And while in the ICU, my colon perforated and dumped necrotizing fasciitis into my right leg. So ultimately to save my life, I lost both my colon and my right leg that day.

And then, I was in the hospital for about two months recovering from all of those things, the GI stuff as well as an amputation. With the necrotizing fasciitis, I suffered a lot of wounds and things that I'm still working through today. But, yeah, that's a little bit of an overview of the crazy saga. But, yeah.

Caroline Fife:
Hey, Brian, this is Caroline Fife. And I think, Morgan, I just want to emphasize a couple things. I'm sorry to butt in, but this is what people forget sometimes is that all wounds are a symptom of people's other diseases.

So if those other diseases are ... Invariably, they're not under control, and that's how people end up with problems, whether they're amputations or other kinds of wounds. And then, they're malnourished. So she's got an inflammatory problem, tremendous weight loss, a horrific infection.

And we've also previously talked about the fact that her surgeon made this courageous choice against a lot of criticism. He had been told that she should have a hip disarticulation and he has, I don't know, four or five daughters. I've forgotten how many that are about the same age as Morgan. And he said, “No. I think we can give her a chance at an above-the-knee amputation, which would make her so much more functional.”

And Morgan dances on an AK amputation, I just have to throw in there. She's just amazing. But the point is that he did an amputation knowing that there was going to be extensive tissue necrosis, but believing there was enough muscle to pull it off. So it was a partnership from the very beginning knowing these were going to be really tough wounds.

And I'll also throw in there that the spot she's continuing to struggle with is a pyoderma gangrenosum that is from her underlying inflammatory bowel disease. So sometimes, she sailed in a way through the amputation. And now, we've got this other thing that's also related to her underlying disease.

Brian McCurdy:
What do you think doctors should know about how to provide the best healthcare experience?

Morgan McCoy:
Yeah. That's a good question. I think before all of this happened to me, I was just a normal 21-year-old, very healthy, had just one primary care physician that managed everything for me, and there wasn't really much to manage. And now, on the other side, I'm looking at 12 specialists with a primary physician that runs point kind of and is the team captain of my team.

And so, I think all of those physicians individually are treating one thing, but they all have to work as a team to figure out what's going to be the best for me as a whole. And I think they've done a really amazing job of calling each other up and communicating like, “Hey, I want to try this treatment. How is it going to affect her bowel, or I want to try this treatment. How is it going to affect the wound?”

And I think that is a really key element to how my treatment has been going and how successful we've been because they've all just been very good at communicating with each other and running ideas past each other, because in the grand scheme of things, each physician has one specialty, but they're really treating me as a whole, and I am a whole human being. So treating one thing and ignoring another just makes things worse. So having a team, and I lovingly call them my team, all working together is really critical for where I'm going to end up being able to go.

Caroline Fife:
Boy, that's a powerful observation. Have you ever fired a doctor because they wouldn't play team ball?

Morgan McCoy:
Yeah. So throughout my journey, there was a lot of people who we had to part ways with. They either just weren't willing to communicate with the other physicians. They weren't really validating our questions and our concerns and our big picture view.

And so having people that weren't really willing to work with the team kind of led them to be off the team. And I was very particular through my whole journey about who I wanted on my team and people ... not even who were just subject matter experts, but people who I genuinely felt like I could trust and who I genuinely felt cared for me as a person and not just a case study. And so, that was a big element of removing people from that team, is if they couldn't play by our rules, we'll find someone who can.

Caroline Fife:
Brian, that seems like a truly powerful observation. Morgan, we've known each other for a few years, but we're talking about a 21-year old who's got the courage to say, “Doc, you can't be on my team if you can't play on the team.” That is a powerful statement about the importance of physician's understanding. And I think the average patient with a wound has five clinicians. The last time we looked, the average patient had five docs involved in the care.

So while Morgan may have a little bit more than the norm, it's not unusual, and it's really hard to find a way to keep all those team members coordinated. And it ends up being left up to the patient, which is tough.

Brian McCurdy:
Yeah. I can imagine. And so, to that point, what do you want patients to know about how they can get the best healthcare experience?

Morgan McCoy:
Yeah. I think from the patient perspective, it's important to realize that it's your care. It's your life. Yeah, maybe a physician didn't work well with my team, but they definitely could work for someone else's team. And my team lineup is not going to be the same as someone else. What I'm trying to get out of my physician's lineup is going to be different than someone else's. And that's like 100% okay.

And so, just being aware of what you want from that experience and being willing to advocate for yourself. And of course, there's times I wasn't able to advocate for myself, but I had a really great support system. My parents are absolutely amazing, and they were able to advocate for me based on what my goals were.

And so just creating your goals and then building your team that aligns with that is super critical. And at the end of the day, a hospital and healthcare system is a business. And you're the customer so you can fire someone, and that's perfectly allowed and okay. You're not stuck with whatever physician you get assigned. So just knowing that you have that kind of power, whether you choose to use it or not, is up to the patient, of course. But just being aware that that is available, I think, is super critical. I don't think that's something that I realized before being a medically complex human.

Caroline Fife:
Just thinking about how that's going to serve you in the rest of your life, you're very empowered. And you didn't choose to be a victim of the things that happened to you.

Morgan McCoy:
Yeah.

Caroline Fife:
I think that's also a powerful message for everybody, whether it has to do with healthcare or not.

Morgan McCoy:
Yeah. For sure. It definitely allows me to have a little bit more control over my journey and my story and having the power to make some of those decisions, I think, is what's kind of propelled me to where I am now.

Caroline Fife:
The other thing we did, Brian, that I think is important to bring up is that we broke rules carefully and on purpose. And just as one example, Morgan's stump hadn't fully healed when we decided it was okay for her to get a prosthetic. That's one of those rules in quotation marks.

But the area that we were struggling with was where several pieces of skin had to be brought together awkwardly because the surgeon was running out of skin, and it wasn't weight-bearing. And so, she had this amazing orthotist. And we said, “You know what? I just don't think we ought to keep this girl in a wheelchair, which she could be rehabbing.” And it worked out fine.

Morgan McCoy:
Yeah. And it's funny that you mentioned that my prosthetist, John Holmes, he is really creative, and he's been doing this for a long time. And I'm kind of the first person that came in with a wound that he was like, “Yeah, let's do it.” And now since that experience, he's been able to have a lot more conversations with other medical teams of patients who do have wounds and been able to get them up and walking, which has promoted their healing a lot.

So it's interesting too now being further down the line and seeing how he's using that to help other patients that are in similar scenarios is really great because there's always room for change.

Caroline Fife:
Yeah. One of the struggles we had, this little spot where she has PG for a while, we wondered if it was her prosthetic that was rubbing. And because I couldn't quite decide, it was kind of a semi-flare.

And so, John was able to say, “Nope, nope, it's absolutely not. Because there's friction, got to be something else.” And that's when we finally said, “Okay, that's it. It's pyoderma. Let's treat that.”

So it's just an example of how you can't just get stuck in some line of thought. And team play is going to be critical for these because all of our patients are complicated. There's just nobody who's easy. But Morgan's an example of the hardest, but it's never obvious or simple. There's always multiple factors.

Brian McCurdy:
Are there any other rules you wish you'd broken? Anything you would've done differently?

Morgan McCoy:
I don't think so. I think I defied a lot of odds and broke a lot of rules already in my journey, quite frankly. So that's not something that I stray away from. I just do that in my normal daily life, I guess, at this point.

But I think that all of this decisions that we made, even when we were breaking the rules, they were very deeply discussed and thought through and all the ifs, ands, and buts about how this connects to something else. And so, I think even when we were breaking the rules, it was very methodical of how we were breaking them.

And a lot of those times that we were breaking those rules, it was like, “Okay, we're going to try this and see what happens.” And so, learning to just try something and see what happens. And a lot of those, let's try it, and see what happens have turned out really great. So yeah, no. I think I broke just the perfect amount of rules,

Caroline Fife:
But Morgan also follows instructions really carefully. So I don't want to imply it's just like, “Hey, we'll do whatever we feel like tomorrow.” We made a plan, and she follows the plan. And I know she's going to follow the plan.

But I think the other thing that I have to keep reminding myself is how intimidating taking care of a wound can be. There's a fear factor to wounds that I think is different than other kinds of medical problems. Maybe, you could talk about just trying to overcome the fear factor of I got this hole in my body, and I have to put stuff on it. And the instructions are complicated. We forget about that as wound care experts.

Morgan McCoy:
Yeah. For sure. I know I've talked to you, Dr. Fife, about this before, but it's one thing to see a wound on someone else and treat it. It's another thing to treat a wound that's on your body.

I think there's a lot of emotional elements that go with that. And it's difficult to, I don't know, treat yourself in a way. And also, yeah, like you were saying, the instructions can be complicated. They're ever-changing. You could do something the same way for five days. And then, it's like, “Just kidding. Let's try something else.”

And so being able to adapt to that and know that just because we're trying something else doesn't mean it's getting worse. So I think a lot of that element of the fear factor of treating a wound as the patient is a lot of the mental stuff. I can follow directions. I've got that down. I can do that. But, yeah, I think it's more of the mental battle of, okay, I'm treating this, and it's on my body, and just being like, “When is this going to end? Is this going to be a part of my daily routine?” And once you get into a routine, having to change it. So it's just kind the—

Caroline Fife:
And all the supplies you need.

Morgan McCoy:
Yeah. It's a vicious cycle.

Caroline Fife:
A lot of stuff.

Morgan McCoy:
And you want to be able to kind of compartmentalize like, “Okay, I'm doing wound care now, but it doesn't mean I have to think about the wound all day.” So that kind of battle, I feel like, is the biggest struggle, if any.

Caroline Fife:
There's something I'm curious about. You are the only patient I've ever had in 30-plus years who was living in a sorority house. And I'm just curious, how did you interact with all these young people around you who would have no idea what it's like to be sick most of the time unless they've had a cold, and certainly no idea to have a wound? Did people see it? Did it freak them out? How did you feel like you were received?

Morgan McCoy:
Yeah. So I think before when I had ulcerative colitis, it was more of an invisible disability. So that was a different interaction because I didn't tell people. So people had no idea, and I was fine with that.

Now, being an amputee, it's obviously very clear, can't miss it. So I think people at the beginning were a little bit unsure about how to treat me. They thought that I was more fragile than I really am. And I had to have some interesting conversations with my friends about being like, “Hey, I know that you're trying to be helpful and protect me and whatever, but I need you to push me. You know I can walk into the football stadium. I need you to encourage me to do that.”

So those kinds of things, I think, were a big part of the journey. And I think living in the sorority house helped a lot because I had to learn how to advocate for my needs and myself very quickly because there's people around all the time, versus if I was living on my own, that interaction might not have come as soon. And then, in terms of my wound, I still think people don't really know about it because you can't see it when I have my prosthetic on or anything. So mostly, my close friends know about my wound. And Dr. Fife, I named him pretty early on. His name's Greg. And—

Caroline Fife:
I think she named her wound, is what she's saying, Brian.

Morgan McCoy:
Yes. I named my wound—

Caroline Fife:
We refer to him.

Morgan McCoy:
Yeah. So my friends know that his name is Greg and address him as Greg. They're like, “Oh, how's Greg doing?” Whatever. But they don't really have any ... They don't see it. I have a couple friends who are going into nursing who are more interested to see photos and things, and I'm happy to share that with them because I think it's a good kind of educational thing for them going into their careers.

But for the most part, my friends don't really see interact with Gregory, my wound. And I'm kind of fine with that. I like to compartmentalize it as well. I like to deal with it when I deal with it, and then go about my day as if I don't have one. So I don't know. That's kind of how I approach it.

Brian McCurdy:
Is there anything else you'd like listeners to know about your experience?

Caroline Fife:
How can we make things better? Where do we really fail?

Morgan McCoy:
I don't know. I think I've mentioned this before, but I think it's super important for physicians to treat patients like a human. The physicians that I were able to trust more and trust that they were making decisions in my best interest were the patients ... or the physicians that I ended up building an actual relationship with.

So I have a physician, Dr. Hobday, who when I was in the hospital would come have dinner with me. And with that, I gained a lot of trust in that relationship. And I knew that he was advocating for me and making decisions that were aligned with my goals because he had listened to my goals. He had heard what I wanted to accomplish. He knew what was on my agenda for life.

And so, I think just maybe you don't need to know everything about them, but know what their goals are and help them, help make decisions that help them reach that. And even explaining like, “Okay. We're going to do this because we want to allow you to be able to swim.” That's been a big thing for me.

Caroline Fife:
Yeah.

Morgan McCoy:
I want to be in the pool. And so Dr. Fife, a great example is like, okay, we're going to try this treatment so we can get you into that pool and kind of [inaudible 00:17:58].

Caroline Fife:
Well, we'll try this waterproof dressing, and we're not going to just say you can't do something because—

Morgan McCoy:
Exactly. Yeah. So just, I don't know, explaining the treatments and creative ideas that come along that align with the patient's goals, I think, just creates a better environment of trust. I think physicians sometimes just get wrapped up in the scientific case study stats of it all. But they have to remember if that was their daughter on the other side, how would they want them to be treated?

Caroline Fife:
There were times we modified the plan because she had a football game to go to, or there were times we thought about, “Yeah. Maybe, she shouldn't walk for a while because maybe that is contributing.” And like, “Nah.” It's just not worth it if there's a really special event to say, “You just need to be in your wheelchair.” We decided that the calendar didn't matter, which I think also helps.

Morgan McCoy:
For sure.

Caroline Fife:
There is something that we haven't ever talked about, Morgan, that might ... I've been wondering how many patients deal with this, and they don't tell me. But you were very open about the PTSD you had from the ICU.

Morgan McCoy:
Yes.

Caroline Fife:
And I remember one day, in particular, we used negative pressure for a while. And you confessed that one of your triggers was seeing tubing, and you did so well. I mean, Brian, just picture this. Morgan's got a negative pressure device in a backpack. And she's walking around on an AK prosthetic while she has negative pressure that's underneath her prosthetic. So she's got to carry that around with her. Totally fine.

The issue was that seeing the tubing would trigger feelings. That was not something that I had discussed with anybody. But I feel confident that I have a lot of patients with various levels of PTSD, and it's never been part of the conversation about why they have certain difficulties coming in for treatment.

Morgan McCoy:
I think the PTSD element is something that is an ongoing thing. Very quickly, when I was in the hospital, we knew I needed a lot of therapy on that sense. And so, we started working on that pretty early. And some of the triggers are very clear like tubing, that's an easily identifiable trigger. Beeping is a really big one. Anything that beeps, which is difficult to live in normal society where there's trucks and microwaves and things that beep.

So a lot of that work is around those triggers that we've been able to identify. And I do EMDR therapy to work through that, and it's been pretty successful for some of those ones that we can identify very easily.

However, with PTSD, and something that I don't think I really knew is that you can be fine for a while and then something can trigger you, and you're kind of back down in that spiral. And so, that's kind of where we are. Even at this point, I was doing really well for a while. And I still don't know what it was that triggered me, but kind of back into that PTSD space with flashbacks about different elements from different medical experiences.

And so, while it can be kind of discouraging to have to rework through things, I think it's important for patients and physicians to realize this is a very common thing, whether people know that they have it or not. I just happened to know because I started that therapy very early on in my journey. But there might not be people or patients who have that kind of access to the therapy element.
And so, they might not even know. And so for me, it's a lot of hard work, a lot of difficult conversations and working through those things. That's still ongoing even three years down the line. And I don't know. My therapist has made it pretty clear that for patients with PTSD, especially in the medical space, your trauma is stored in your spine. So even the smallest thing or someone could bump me weird and that could cause that trauma in your spine to kind of unravel. And so, it's kind of an ongoing process that we're still working through. And that's fine. We're good.

Caroline Fife:
Yeah. I really had missed that before, and I've been more sensitive to it because Morgan felt comfortable to say, “Look, I need to not see this tubing.” The tubing, of all the things people struggle with about negative pressure. It never crossed my mind that that tubing is just one example of just having a broader understanding of the patient experience.

Morgan, my dear dad did World War II in Korea. And the thing that would to ... He was 90 years old. And it would freak him out if somebody cracked chewing gum because it sounded like a stick breaking in the jungle.

So these things that seem trivial to the rest of us, somebody who crack gum behind him could send him shooting out of a chair when he was 90 years old. I think that's a dialogue that can be really helpful. And it's good to have in the back of our minds sometimes, when patients seem to have overreaction to something, there's a story behind that.

Morgan McCoy:
For sure.

Caroline Fife:
There was also a time that you weren't ready to look at your wound, and that's okay. I feel like that's totally okay, that we ought to give people permission to say, “You know what? You can close your eyes. We can put a sheet up. You don't have to look at this until you're ready.”

And there has to someday be that level of acceptance if it's going to be a long-term thing. But I don't think we ought force patients to do things before they're quite ready.

Morgan McCoy:
Yeah. I think speaking to that a little bit more, I think if I had been pushed to look at the wound before I was ready, that would've caused more trauma that I would now be having to work through, and also potentially be a hurdle that wouldn't have allowed me to go back to college and treat my own wound.

And so, I think, again, looking at that bigger picture of what does the patient want to accomplish, I wanted to go back to college. So if I had had so much trauma from looking at the wound to where I couldn't take care of it myself, I wouldn't have been able to go back. And so, just piecing those elements together that align with the patient's goals and giving them time to get there and helping them kind of work through like, “Okay. Maybe, just look for two seconds, and then that's all you have to do for the week.” I don't know. Just those little things that are a part the patient-physician experience, I think, are what really add up.

Brian McCurdy:
There's so much to think about. Yeah.

Caroline Fife:
And as physicians, we get so [inaudible 00:24:39] just Tuesday for us.

Brian McCurdy:
Yeah.

Morgan McCoy:
Yeah.

Caroline Fife:
And it's hard to keep remembering that if this is not something you've ever experienced, it can be completely terrifying.

Brian McCurdy:
Yeah. So I want to thank both of you for being here today, Morgan and Dr. Fife. I think this was a great discussion, and patients and physicians will really find it valuable. And I want to thank everyone for listening to Today's Wound Clinic. And check out the extra TWC podcasts on SoundCloud.

Caroline Fife:
And Morgan's editorial, Brian. She's written for TWC before. So I think people will really enjoy going back to look at some of her previous articles. And, Morgan, thank you for being an inspiration and just helping me remember why I do this. It's a good therapy for me too.

Morgan McCoy:
Yeah. Thank you all for letting me share my story and my perspective. I appreciate it.