Dave Plough
Hello and welcome to Collaborative Conversations. This is the third episode. Fourth episode, one two, three, four. This would be the fourth episode of season two. I am the host, Dave Plow, and I'm joined by.

Doctor Barbara Maxwell
I'm the director of the IP center here at Indiana University.

Dave Plough
And today we are doing part two of our or not our interview. Actually, your friend Ted Meyers interview with our patient advocate Rick Phillips.

Barbara Maxwell
Yeah. And, Rick shared so much wonderful information and insights in the first podcast, And it will be wonderful to hear him, continue and give more depth and more kind of of his personal story, but also his incredible insights. And with Chad, who is an absolute master at drawing those insights. Right. So, I'm really looking forward to part two.

Dave Plough
Yeah, so am I. I say, so am I, like, I haven't heard it. I was there for the interview. I was privileged to be there while they were speaking, producing this episode and one of the things that struck me about this episode, I say struck me. One of the things that's very interesting about this episode is that in the first part, we got a lot of Rick's story, like history type stuff. In this episode, we hear a lot more of the experiences that he's had with his own care. Ted is very good at drawing people out, getting them to talk about their own experiences, and that's what we get in this part. So it's an exciting episode. You're going to learn a lot about the patient experience. If you've never had it. Rick is very good at putting you in the patient's shoes, speaking from the patient's perspective. So it's a very in-depth, great look at what he's experienced and how it could affect you if you were in a similar situation So with that, we're going to let Ted and Rick take it away, and we'll see you at the end of this conversation.

Ted Meyer
So you've had treatment, like, over such a long period? Do you have any good stories of, like, really good care or doctor was really listening to really bad? Because bedside manner is important in dealing with your patients as human beings and not lab results is important. So maybe you could toss in a little advice and tell us a story or two.

Rick Phillips
I have I have two, one of each, my, endocrinologist. I had had diabetes for, I would say about 40 years, and my care had been spotty and I had not seen an endocrinologist. my primary care physician retired, and he said, you know, you've got to go get an endocrinologist. he, he made a suggestion of couple. I you should probably check into. So I looked up the one that was near my house and I called, get an appointment, and I went in to see him expecting to hear, just a broad attack. Why am you being here? And why aren't you doing this? And why aren't you doing that? And, this was a very experienced endocrinologist, and we sat down in his office, he pulled out my chart, got everything out. He said, you know, you are doing a remarkable job. We could do better, but you on your own are doing a remarkable job. And I will tell you, that moment sealed the deal. When he said when he acknowledged, even though my care was spotty, even though my numbers weren't great, even though, I'd never seen him before. When he said, you are doing a remarkable job, I would follow that man to the end of years. And did, he he retired. I have a new endocrinologist, but that simple statement, turned me from being like this against advice to being like this, open and accommodate. I tell him, I say, you you have no idea what that meant to me. and he really didn't because, that was just his nature. That's just what he did.

Ted Meyer
When I talk to med students, I always talk about, like, making sure they pick the right specialty for their personality. Like, if they. If they're people that run on adrenaline, they shouldn't be having that conversation be in an emergency room patching people up and going home and having a beer. You So let's hear your bad story.

Rick Phillips
Well, the bad one. Bad one happened twice. I, had to have back surgery, so I was being handed off to the hospitalist at at my house battle system, which is always scary for a person with diabetes who uses a pump. Particularly when that person knows that they are going to be on very heavy narcotics for a period of time. And it scares me to death to think that I would have control of the pump in that moment. So, twice I went to the hospital, I insisted that I meet the hospitalist. I told them at type one diabetes. I showed him my pump. I said, you know, when I come out of surgery, you will have control of the insulin. And, this is my carb ratio. This is how we operate it. I realize you'll do injections, but you will have control of the insulin. I have this major surgery. I get back up to the room,

Ted Meyer
How long were you under anesthesia?

Rick Phillips
Yeah, four hours or so. I get back up to the room, and for two and a half days, there is no insulin, because he was treating me as a type two, and, in his mind, if my blood sugar was 3 to 400, I was fine, because as a type two, you know, you will adjust and we will eventually bring it down. It's not a big deal. Well, I tell you what. For me, it's a big deal. I keep my blood sugar, I panic if it gets above 150, and I watch it every moment of every day. It is a very big deal. I just couldn't believe it.

Ted Meyer
Did you call them out afterward? Did you say, hey, specific instructions, and what the hell?

Rick Phillips
Yeah. I had to call my endocrinologist, and I said, listen, I've been here two and a half days and I don't have insulin. And, she said, oh, well, I'll get that fix. And she did. She transferred care and put me on a regime that worked. And I was so appreciative. Well, about four years later, that back surgery had to be revised. I went and again, I talked to the, hospitalist. Same guy. And I told him, look, this happened before. We did not want to let this happen again. And I have type one diabetes. I normally operate this by myself. The only reason I'm giving it up to you is because I'm going to be under the influence of a narcotic, and I don't want to be responsible. So I had to revision surgery and it was a couple of hours and, get back to the for, almost the entire day passes. No insulin again. I have to call the night service, my endocrinologist, and say, I called him at home and said, listen, I'm not getting insulin. And, he said, well, you're in the hospital. Hospital? You should call the hospital. I said, hospitals won't give me its one. He thinks I'm a type two. And, he will not give me insulin. Well, 2 or 3 calls and, they they were giving me a so now that is pathetically bad. And this is a trained hospitalist person. This person has been around hospitals for a long time, but it's a basic misunderstanding of the difference between type one and type two diabetes and a basic misunderstanding of what a pump does. And the impact it can have on a person's life. I told him, I said, I won't heal. This surgery will not heal if I don't get my blood sugar down. And he said, well, you can worry about that when you get home. Well, I'm not to worry about it right now because I'm panicky about it. I don't think that I'm going to collapse or die because of high blood sugar. Because if you're not giving me insulin, I'm not eating anything, and I'm trying to float through until I get the heck out of here. I will never give up my pop again. It will never happen again.

Ted Meyer
The whole idea of this talk is to talk about interdisciplinary care. Is that just bad communication? I mean, you were very clear. Was it bad communication between the workers at the hospital? Or should your endocrinologists have stepped in first? Like, where did it go wrong? Do you think

Rick Phillips
You went running the system. The system was wrong. Because, my endocrinologist is associated with that hospital system. And it seems to me that when, a long time, a person with, type one diabetes comes into the hospital, the endocrinologist in the hospital system should be allowed to manage, the, day to day insulin on the poor as opposed to turning it over to a generalist who has no understanding, diabetes technology and really, type one diabetes. You know, we're a subset of, the, diabetes community, for about 1.5 million, to 1.7 million people with type one in this country. We are a subset of the, larger diabetes population. We understand that, but we are also, experts in, you know, and that's really the thing I tell my doctors, you are my consultant. I view you as my consulting. You have a special role to play. Your role is to advise me, and your role is to write prescriptions, and do procedures. My role is to tell you how I'm doing and if I will agree to do the medication and the procedure. But make no mistake, I'm going to run the ship. I'm not going to try to usurp what you did because I can't do what you do. I need you, but you need me. And we can only do this when we work together. And, I think that's a fundamental shift between what, was occurring in the 70s and 80s, to what I think is standard of care for today. It's the same way with arthritis. You know, my doctor and I talk about, the newest medications that are in development. Every time I see her, we talk about what I'm taking, how I'm doing, and then we talk about, the rumors of medication. We talk about clinical trials. We talk about, methods of administration. Both today and future. And we think about, rheumatoid arthritis 18 months in advance. And I need her to do that. I need her because that's how we're going to make rational decisions.

Ted Meyer
So you have. I presume you have two teams. You have an arthritis team and a diabetes team. Do you get them to communicate?

Rick Phillips
Not very often. It's almost impossible. I actually have two others. I have four, I have the, chronic kidney disease, type three a, which is the, first part of, being really concerned. I also add open heart surgery back in 2005. So I have a heart team. And then, honestly, I have a, psychological team. They're all connected in the same hospital system. They all work for the same employer, but getting them to talk to each other, that's impossible.

Ted Meyer
Do they at least all know what drugs you're on from the

Rick Phillips
Yeah, yeah. They do. Yeah. and I try to be very careful as to who, who comes on, who comes into that mix? I always asked my current doctors, that I love who they would recommend because I know if they recommend them, that that means that they have had interactions with them and that's an extremely positive thing. And then, I try to interview my doctors before I select them. Again, this is a partnership. they have very highly valued skills. Skills I can't have, but as I said, I have skills that they can have. And it's when we map show skills together, when we get them to come together, that's when we get the best treatment.

Ted Meyer
So, have you rejected anybody that you've interviewed? And if so, why?

Rick Phillips
Yes. I rejected, two rheumatologist, my longtime rheumatologist left practice, and, I, went to, three offices to, talk with, rheumatology doctors. I rejected one, very highly, skilled, very highly recommended. Rheumatol. Just, I rejected her because of the way the office was run. When I went in, it was during Covid, and, the people at the front desk were talking about other patients, and, I could hear the other patients names, and I could hear, I could see that they were not interacting with anybody with the mask. And, I met with the rheumatologist and I told, I told my wife when we left, I said, I can't, I cannot come here, because the doctor needs to understand that when you walk in the lobby, that is the first major interaction you have with, with that doctor and that receptionist, the person booking or the person the medical assistant, they are more important. On a day to day basis than the doctor.

Ted Meyer
Yeah. Okay, I yeah. I'm always amazed when I go to. You know, the hospital on LA because it's. It's not unusual to be in a waiting room with somebody famous. You know, if they're not real famous and they just sort of come out and yell their name, and it's a name you recognize and you're thinking like, what about HIPAA rules were so you've got 50 years of experience. what would you say to some kids now they just find out they've got diabetes and they're worried about their future. That's you can be the old sage and, give some great advice. What would it be?

Rick Phillips
Three things. First, find a partner. Find somebody that, be it a parent. A girlfriend, a spouse. Boyfriend. Find a partner, buying psychological help early. You will not think you need it. But you will, the IBS in particular is a long term, long run disease. It will not. Probably in most cases, take your life, but it can make your life miserable. So, what you need to do, in my opinion, is you need to deal with the, psychological, social aspect so that even no even know when you're first diagnosed. You do not think you need, it is wise to begin to talk to somebody to let go of that pressure, because you're looking at a 50, 60, 70 year run, ahead. And you can't contain that discomfort, that mental emotional discomfort for that amount of time. You just can't do it because it just keeps you at the tire and tire. So it's better to, get help early and to, find an outlet so you can release it a step or two. Number three This is not tracked me. It is a marathon. And you need to run it like a marathon. I know a, family, a mom, single mom, with a young man who is, in high school now, I, I met him when he was in grade school, his mom was troubled, by the pump because it kept beeping, and it would, interrupt his life and interrupt her life and, they asked me what to do, because Both had more so frustrated with the pump. I said, turn off the damn alarm. we need to understand that, a high blood sugar can be corrected with insulin. We know the cure. We know how to correct high blood sugar. We know how to correct low blood sugar. But the automation that we have is to be a tool to help us. It's not the end all. She said, well, when we go to the interview now, just all the numbers are there. We can all just looks at it and I feel like they're passing judgment on our management. I understand that, but if the numbers are high or the numbers are low or the numbers are wacky, that's a matter of treatment. That's not that's not a judgment on you. That's a judgment on the treatment. we need we need to think about it that way. We need to think if if something's not right, then we have to think about it in terms of, how can I improve the treatment? Not how can I improve the person? The person, believe it or not, will grow into, into the treatment goals or not. One of the best things that somebody ever told me, they said, you know, when you are sick and tired of feeling sick and tired, you will take care of your diabetes. And that's true. When you get sick and tired of being sick and tired you, you made your blood sugar a lot tighter.

Ted Meyer
Well, one more question. since you're back in school and you're you're studying to be

Rick Phillips
Yeah, yeah. I'm a, lay minister at, our, church, Disciples of Christ congregation in Carmel, Indiana. I decided that I didn't know enough about, about doing that. So I went into a lay ministers program. It's much like an associates program. It's a three year program. And, it's tougher than. It's tougher than it probably sounds. It's tougher than I thought it would be.

Ted Meyer
Well, let me let me ask this question. So I'm I'm always amazed by people with a lot of illness or have had that accidents or things that that find a lot of strength in religion because I'm a atheist and I tend to just think this is my lot in life and I do the best for myself I can, and when it's over, it's over. And I have friends that have been through horrible, horrible things, losing limbs and, you know, terrible strokes. and if I was them, I would think, oh, well, God, where were you? So you have a myriad of things going on and you're looking for God. So maybe you could talk to me a little bit about the difference in our attitude and your attitude.

Rick Phillips
Well, I think the most fascinating question in theology right now is, why do, bad things happen to good people? that is the question that I wish to pursue, after I graduate. Now, I will tell you how I answer that question, and I answer the question like this. Why not? If type one diabetes only affected people who murdered, then we would not have this one pops. If rheumatoid arthritis only impacted people who, school cars, we would not have these big drugs. If, you think the nursing spotlight is only impacted people who, jump out of second story windows because the police are chasing them, we would not have these drugs. So why not? Why not me? You know, God never gave me a promise that I would be healthy. God gave me the promise that I could serve others. And it's that service that drives me. And as I say, when I think about these big diseases, my first question is, why not me? What would make me any better than, the guy walking down the street, who committed a crime? Life's not what would make me any better than anybody else. I find, great comfort in, religion because I find great comfort in knowing that I can communicate with God and, not feeling control, but feeling like I have a advocate outside of myself. That's very important to me. But to me, the central question is, why not me? Because nothing makes me any different. I want to know what the other great religions, in the world, how they answer that question. Because I think that is the central theological question for people with chronic disease. Why do bad things happen to good people? And I think that how the major religions answer that question, would be very insightful.

Ted Meyer
All right. I'm ready to read your graduation thesis.

Dave Plough
And that is all for Ted's conversation with Rick. I want to thank Ted for doing this. Even though it's remote via zoom. He is on the other side of the country speaking to someone here. So time zones matching up. It took a little bit of work, but thank you, Ted, for for being flexible and getting this going. And Rick, again, thank you so much for working with us and helping us and just providing your expertise and your experience for this conversation.

Barbara Maxwell
Yeah. And As we said at the beginning of the episodes, the whole purpose is to hear the stories of real people engaging in collaborative work, or real people who benefited from or who have not benefited from, collaboration and action and so to hear Rick share, you know, success stories of things that worked well and things that didn't work well, experiences that were not so good. You know, those of us who work in health care really try our best to do our best. But one of the things we often fail to do is attest to the expertise of the patients themselves and to really, truly engage them in their own care. And I think what Rick has shared is a real, strong testament to how important that is.

Dave Plough
Again, thank you both so much for doing this. It was great to get those insights. And if you want more insights from either patients, students, providers, faculty members, whatever, you can follow us on LinkedIn. We share as much as we can, any information that our department is able to put out gets shared throughout LinkedIn. It also gets shared on our website, IPR, YouTube. Edu. We want you to just come, you know, join the conversation basically. So with that, we're going to go ahead and wrap things up here on this episode, and we will catch you on our next episode as we speak with Doctor April D Newton and Jodi Miller about our Cycles of Addictions program. So thank

Barbara
Yeah. And you won't want to miss it. That'll be great.