#1173 Grand Rounds: Dr. Maggie Mueller

Dr. Mueller is the mother of a son with type 1 diabetes and a Urogynecology and Reconstructive Pelvic Surgeon.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 1173 of the Juicebox Podcast.

Today we'll be speaking with Dr. Maggie Mueller. She is an associate professor of obstetrics and gynecology, an OBGYN and a reconstructive pelvic surgeon. She is also the mother of a child with type one diabetes, and she'll be lending us her perspective today. As we expand on the Grand Rounds series. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you have type one diabetes, or the caregiver of someone with type one and a US resident, this is your opportunity right now from your phone or tablet to help with type one diabetes research. T one D exchange.org/juicebox. Head over there. Answer the questions in the survey completely. And when you're done, you've helped it's super simple and you won't be asked one question that you don't know the answer to T one D exchange.org/juicebox. You can help. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juicebox.

podcast if you're ready to level up your diabetes care, the diabetes Pro Tip series from the Juicebox Podcast focuses on simple strategies for living well with type one. The pro tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works and so much more. My daughter has had an A one C between five two and six for since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults, and for the newly diagnosed and for those who have been struggling for years. Go to juicebox podcast.com and click on diabetes pro tip in the menu or head over to Episode 1000 of the Juicebox Podcast to get started today. With the episode newly diagnosed we're starting over and then continue right on to Episode 1025. That's the entire Pro Tip Series, Episode 1002 Episode 1026 This episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juicebox This episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're higher low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out?

Dr. Maggie Mueller 3:12
Well my name is Maggie Mueller Knut SIG. I am a mom of a type one son who was diagnosed almost two years ago who's now 10 years old. His name is Hudson. by trade. I am a surgeon. I am a Euro gynecologic and reconstructive pelvic surgeon. I work at the University of Chicago and I'm very excited to be on your podcast.

Scott Benner 3:35
I have to tell you that I could have guessed Chicago by the last name of the man you married.

Dr. Maggie Mueller 3:39
Oh really? Because it's not common in Chicago. He's from Minnesota, where everyone? Everyone can pronounce that last name. You know, here when we go out to dinner, we use my last name for a reservation. Otherwise I have to spell out every single letter

Scott Benner 3:56
in my mind. I was just like Wisconsin, Chicago, Minnesota somewhere around there. You nailed it. Yeah. Sounds like something that would have been in a like a name that would have come from like, I don't know, a first Bueller movie or planes, trains and automobiles or something like that. So that's what got me there. That's what got me there. Okay, so Hudson was diagnosed two years ago.

Dr. Maggie Mueller 4:13
About two years ago, February of 2022.

Scott Benner 4:18
Okay, okay. And how old is he now?

Dr. Maggie Mueller 4:20
He's 10. So he was diagnosed at eight. Okay. Do you have any other children? Yes. My daughter. Our daughter Greta is seven. Any

Scott Benner 4:30
other type one in either of your families? Your husband's yours?

Dr. Maggie Mueller 4:32
No, no type ones.

Scott Benner 4:35
Any other autoimmune stuff.

Dr. Maggie Mueller 4:37
My husband Tyler has vitiligo. I have hypothyroidism.

Scott Benner 4:42
You guys are a little cocktail. Okay? Yeah, there we go. His vitiligo very obvious, not so much.

Dr. Maggie Mueller 4:52
Not so much. You really, you know, maybe a little bit on his hands when he's out in the sun, but you can't really tell if you Just a very light complexion blonde

Scott Benner 5:02
is your hypothyroidism Hashimotos? Or have you never been tested for antibodies?

Dr. Maggie Mueller 5:08
Yeah, it was Hashimotos I think I was tested for antibodies when the timeline is foggy now, but it was either college or medical school.

Scott Benner 5:17
Okay, how old? Are you just for context?

Dr. Maggie Mueller 5:20
I am 41.

Scott Benner 5:22
Okay. All right, do you manage just with a Synthroid or a tiersen, or some sort of T three or T four? Excuse me? Yeah, I just take Synthroid, and that's fine. Your energy is good and all that stuff is there. Yeah,

Dr. Maggie Mueller 5:35
I mean, I wish I had more energy. has anything to do with the hypothyroidism

Scott Benner 5:40
I have to tell you without a T three supplement a tiny little bit of side ml my daughter shuts off. Really? Yeah. Yeah, like exhaustion can't rest nothing. It's terrible. Got it's the smallest dose of cider mill you can get is at point five micrograms. Maybe I'm not sure. Or five. Oh, no, I'd like maybe huge difference for her. Okay. Am I need to look into that. Her body carries extra weight without it and her there's no, no energy whatsoever? Oh, yeah. It's terrible. Because yours to figure it out, actually. Yeah. Okay. So what was Hudson's diagnosis? Like? Was it obvious because you're a doctor, right? You knew right away on the first day imagine.

Dr. Maggie Mueller 6:19
I mean, this is where it becomes more embarrassing than anything. So. So this was, you know, kind of post COVID slash people were still masking at the time. He what we what we really noticed was that he was going to the bathroom all the time, it kind of became like a little bit of a joke, we would, you know, get in the car, we would have to stop after 15 minutes. And we just thought maybe he was just drinking too much or wasn't going to the bathroom at the right times. And then it would wax and wane, it would go away. We wouldn't think much of it. He is an active kid. He's been playing hockey, travel or travel hockey since he was seven. So the monitoring of the amount of food that he was eating, I mean, he just seemed like he was a growing a growing kid who had a really big appetite. And was always on the kind of skinny or muscular side. Looking back at it. I remember it was my husband Tyler's birthday, a week and a half before he was diagnosed, and I cooked salmon. And Hudson, who was eight at the time, he had five filets of salmon that night. And I remember thinking like, Wow, he really must be working out a lot. I'm burning a lot of energy, because he's eating so much. And then there were some other things like we saw him, he was tired a lot, you know, he, but again, we attributed that too. He's playing hockey five times a day. And then, you know, looking a little bit more carefully, we started to hear from the teachers at school, like it's Have you noticed, it takes him a long time to do something like he'll go to the bathroom, and he'll be gone for a really long time, or we'll have to remind him to do these things, which again, was easy to write off. As, you know, he's an eight year old boy, you know, it takes him a long time to do things you need to remind him. So I think we went for a really long time. You know, just kind of writing off some of these symptoms until the night he was diagnosed. I think Tyler had gotten he was at home, I was at work, I was actually in the or, I had finished my cases. And he had told me, you know, we, we really need to like test his urine. I thought maybe he had a UTI because he was going to the bathroom so much. And so I was gonna bring home some urine test strips. And then Tyler called me to just make sure that I had I was already in my car, I was downtown, and I had forgotten the urine test strips. But I turned around and went back up to my office, I grabbed the urine test strips, went home, it was a Thursday night. And you know, had Hudson pee in a cup to see if he had a UTI. And when I took the urine test strip out, like it didn't have any signs of infection, there were no white blood cells, the nitrate was negative. And it was just positive for like the largest amount of ketones and the largest amount of sugar. So I, you know, being a stupid surgeon texted some of my family medicine friends that I went to medical school with and said, you know, is there any other reason to have, you know, sugar and ketones in your urine? And most of them replied, No, it's that that's really abnormal. It sounds like it could be diabetes. And then the next thing was, is this an emergency? Can I you know, wait until the morning. And it just so happened that another one of my friends that I reached out to her friend was a an ER doctor at Larry's Children's Hospital in Chicago and said, You need to pack a bag, you need to come to the hospital. He's gonna get admitted. So all of this was happening actually. When my sister Her and her children, were making a surprise visit to come visit me for my 40th birthday. Surprise. Yeah, so she honestly walked through the door right after I had tested his urine and was figuring out that he was diabetic. And her kids are the same age as my kids. So we have this video where like, I'm in the background, probably crying. And you know, the the kids are all just like hugging and embracing. They used to live here. And then they moved to South Charleston, South Carolina. And then, you know, she walked in further and saw that there was something wrong in order to get Hudson. Now in the midst of all this, before we went to the hospital, so my family, my parents were at our house too, because they knew my sister was coming in to surprise us. So I sent my dad to the Walgreens to get a glucometer. But unfortunately, the first time he came back with just the glucometer. Then he came back with just test strips and something out. I mean, he went there three times. And I said, like, just go talk to the pharmacist and ask, you know, what exactly do you need to take somebody's blood sugar. So finally he came back after the third time, and we took Hudson's blood sugar and it was like, 590 or something like that. When

Scott Benner 11:14
you tested all your friends, or texted all your friends, were you did you know it was diabetes? You were just hoping it could be something else or did you really not know? No, I

Dr. Maggie Mueller 11:22
mean, I really was. I was caught so off guard. I thought that he you know had a UTI. Yeah. Sorry. I just was really I was you

Scott Benner 11:32
were taken aback. Okay. Yeah, I just I wasn't certain because I don't know if like, I mean, I guess people would listen from the outside and think you're a surgeon like you you put it together. You said oh I have Hashimotos has been has been a Lago. These are all autoimmune disease, but that's not how it works. You're just a regular person in that moment.

Dr. Maggie Mueller 11:51
Yeah, I mean, to be honest, I didn't really I mean, until Hudson was diagnosed, I didn't really equate type one diabetes with autoimmune diseases. So I That wasn't even like, on my radar at all. I just knew, I mean, I think I think I knew it's not normal to have, you know, sugar in your urine to be spilling sugar in your urine. And it's not normal to have ketones in your urine. I just was kind of hoping that it was potentially something else. And probably clinging to a little bit of a little bit of hope. But I I definitely wasn't putting all of that together.

Scott Benner 12:29
This episode of The Juicebox Podcast is sponsored by the only six month were implantable CGM on the market. And it's very unique. So you go into an office, it's I've actually seen an insertion done online like a live one like, well, they recorded the entire videos less than eight minutes long. And they're talking most of the time the insertion took no time at all right? So you go into the office, they insert the sensor, now it's in there and working for six months, you go back six months later, they pop out that one put in another one, so two office visits a year to get really accurate and consistent CGM data that's neither here nor there for what I'm trying to say. So this thing's under your skin, right? And you then wear a transmitter over top of it. Transmitters got this nice, gentle silicone adhesive that you change daily, so very little chance of having skin irritations. That's a plus. So you put the transmitter on it talks to your phone app tells you your blood sugar, your your alert, show arms, etc. But if you want to be discreet, for some reason, you take the transmitter off just comes right off no, like, you know, not like peeling at or having to rub off it. He's just kind of pops right off the silicone stuff really cool. You'll say it. And now you're ready for your big day. Whatever that day is. It could be a prom, or a wedding or just a moment when you don't want something hanging on your arm. The ever since CGM allows you to do that without wasting a sensor because you just take the transmitter off and then when you're ready to use it again, you pop it back on. Maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Ever since cgm.com/juicebox, you really should check it out. Members of my private Facebook group are constantly posting about how much they love Omni pod five. Maybe you've seen those posts and thought I wish I could have that experience with an insulin pump. If you've had those feelings you might be experiencing fu fear of missing out on Omnipod. Symptoms of flu may include but are not limited to wishing you could wear outfits without pockets dreaming about walking past doorknobs without getting your tubing caught. fantasizing about jumping into a swimming pool without disconnecting from your insulin pump first. Well, I've got good news. You don't have to suffer from FOMO any longer. You can see what you're missing by trying Omni pod five for yourself. Visit Omni pod.com/juicebox To get started, for full safety and risk information, also visit Omni pod.com/juicebox. There are links to ever sent on the pod and all the sponsors in the show notes of your podcast player and at juicebox podcast.com. You know, it's funny yesterday, this is such an odd story. But yesterday I was standing in line paying for my Christmas tree. And this young woman, like probably 30 years old was off to my right. She was talking to a couple of people. And I guess her husband was ahead of me in line. So she calls past me like over me to him, Hey, honey, what's that thing I have? That's what she said to him. And he turns around, he goes, what she goes, you know, my cold fingers? What's that syndrome I have? And he goes, Raynaud's like that. And she does. She turns back to the end, she keeps talking, and she kind of made eye contact with me. And I said, Hey, does anybody else in your family have any autoimmune diseases? And she looked at me and I said, like, you know, celiac, or diabetes or anything like that, and she gets this look on her face, like, Holy hell are you from the future? And she's like, my sister has celiac. And my mom has type one diabetes, and I went, Okay, wait, wait, stop. She goes, How did you know that? And I said, Well, I didn't know I was just guessing. But I said, what you just said, Raynaud's, it's a autoimmune issue. And sometimes they run in families. So celiac, and so it was type one. And the friends she was talking to looked at me like he must be a television doctor. And I was. It was very, it was such an odd moment, and very funny. But the whole story is about the look on her face. Like, how would you know that? Possibly. And then it's funny, because I think how do you not know that? But then I realized I'm the only one making this podcast. So like it, you know it? It does make sense. Wow. So okay, I've got the scene set. Your family has just arrived, your father is inept, at best, no offense to him.

Dr. Maggie Mueller 16:54
I love him to death. And he was so helpful. And he did go back three times. But

Scott Benner 17:00
a surgeon I know, we're all wondering it. So like, so. So anyway, so like, this is all happening. You're really like you're distraught. Would you say? Yes, yeah, at this time?

Dr. Maggie Mueller 17:11
How's Hudson? He's also hysterical, because we wanted to prick his finger and get, you know, the blood sugar. And, you know, this is another like, I didn't know how to do this. So I had whatever Lancet, my dad had come back from whatever, visit back to the pharmacy, whichever, you know, series was one, two, or three. I mean, I think I like really jabbed his finger to get blood to come out. So he was hysterical from that. And then I didn't read the directions, of course, and I don't think that I had assembled everything correctly the first time, then I had to do it again. So he was hysterical, just with the finger pricking. And then when we needed to go to the hospital, you know, he was hysterical about that. So we actually had to, I had to put my nephew in the car along with Hudson, and drag both of them to the ER, because Hudson wouldn't go without his nephew or without his cousin. So that's kind of where things started. Oh,

Scott Benner 18:13
sorry. So once you get to the ER, and they get him admitted, and you're in a room, do you suddenly think, well, I'm trained on this, I went to medical school like, or do you feel as lost as everybody else in that moment?

Dr. Maggie Mueller 18:28
Well, I remember being happy. So I remember the first thing they it was very quick, you know, even in a very busy er, when I went and told the, whoever was taking intake, what we were there for, I mean, we got, you know, shuttled into a triage room. We didn't wait at all, when I said that his blood sugar was, you know, 500 something. And I remember they did it what, you know, an abg, not a real AVG, but whatever they must fit, poke your finger, not the way that we he used to have to get arterial blood gases, and they knew that he wasn't acidotic. So I was happy that he wasn't in DKA. But it turns out, you know, I guess the term they use is DK No, a so he was ketotic, but not acidotic. So I remember being happy that he didn't have DKA because I knew that was going to change things a little bit. But no, I remember being really still kind of dumbfounded. The nurses are there. And then we might have seen him a resident and then another faculty from the endocrinology team that night when we were still in the ER, and I remember them, asking about family history. And, you know, Tyler has some type two diabetes on his family, but no one had type one. And we were just, you know, we didn't really realize that this could happen. And I still wasn't even exactly sure. You know, I think they were giving him they gave him a little bit of insulin IV through you know, they had him on a drip for a little bit, and then made it plan to kind of transition in the next day. But I mean, I didn't know what was happening at all. Basically,

Scott Benner 20:05
were you about to say you didn't. At that point, you didn't even realize he was gonna need insulin. Through his life. No, I

Dr. Maggie Mueller 20:10
knew he was going to need insulin, but I didn't really know what that was going to look like, acutely, you know, how are they going to get him through this acute.

Scott Benner 20:19
Okay, situation, right? Your husband goes with you. Does everyone else come or who's in the hospital with you?

Dr. Maggie Mueller 20:25
So yeah, so my tie what was driving he was probably parking when I brought him up there. The first, you know, very quickly. Yes, I had, it was COVID. So they were strict about things still at the time. So I had, we were all together. Tyler was there. And then I had my poor nephew Fox with me, because Hudson wouldn't go by himself. So all four of us were in this room until my sister was able to kind of coax her son back home, you know?

Scott Benner 20:56
Oh, yeah. So that the thing is gonna start happening. And everyone's not not completely knocked off kilter by this. And, by the way, how crazy that that's on an a family visit from like, cross country. Oh,

Dr. Maggie Mueller 21:09
yeah. I mean, it was just like, how could this be happening? And, yeah,

Scott Benner 21:13
that ended up being helpful that she was there. It was so helpful.

Dr. Maggie Mueller 21:18
I think that it was helpful that she, I mean, she did help with a lot. My sister's not medical, but she helped with a ton of things at home. You know, I think that we obviously, would have not wanted any of this to be happening. But she was really helpful. I think my mom was also very nervous at the time. So it was helpful to have my sister there. She's very level headed, and just kind of was ready to say like, Okay, what do we need to do to make this work?

Scott Benner 21:46
It's nice that it's, I found it helpful to have support. Oh, yeah. Even when we just got home. My mother in law came and cleaned the whole house. I think she didn't know what else to do. And we did. And she was like, what if I like what would help you? And I remember saying, if the house was clean, and the laundry was done, I think I could like, focus on this for a couple of days. Like she came to our house. I cleaned everything, did the laundry. I was like, Oh my gosh, the only good thing that came out, Arden's diabetes was like, three loads of laundry. Okay, so he's he's admitted, now, things are moving along. They're getting his blood sugar to calm down. Now, the the education starts. Yes. And so I mean, I'm really I have you on here to hear your story. But I also want to hear from you. I think you have an insight that a lot of people don't have. So you know, when you hear people come on this podcast, and it's a it's a crapshoot, right, either somebody says, I got a great doctor. And they actually weren't right. Or they are like, Oh, my God, my doctor didn't teach me anything. Like, there's not usually a lot of in between, like, sometimes there's people are a little overwhelmed. They don't absorb everything. Or sometimes people give doctors a ton of credit. And then as I talk to them, like, I don't understand, like your agency is eight and a half, and you've had diabetes for six years. But you're sitting here telling me that you have a great endocrinologist. How can that be? And then when they really pick through it, they go, Oh, well, I guess, maybe I liked them a lot. And then you find out that people judge their doctors, by if they like them, not really as much about their outcomes, which is fascinating. But I'm trying to figure out, what do doctors know? What should they know? And is there a way that we can get that information to them? And I think you're in an incredibly unique situation, maybe to walk through that a little bit?

Dr. Maggie Mueller 23:35
Yeah, I mean, I think that, you know, from our experience, I think it is the acute diagnosis period requires so much support during the education. So it should be prefaced that, you know, Hudson was highly motivated to get out of the hospital. So I mean, every single time anyone came into the room, he asked, When can I go home. And, you know, being medical, I knew that it was Friday, nothing was going to happen over the weekend, like, there wouldn't be any education. I understood. They told us what needed to happen that we needed to meet with the diabetic educator that we need to meet with the nutritionist. And I was worried that none of this stuff would happen before the weekend, and we would be there until Monday etc. So they were actually very helpful and we were able to get fast tracked. We got the Dexcom in the hospital. Tyler, you know, ran over to the Apple store and bought a phone because we understood that that was the way that we needed to, you know, track the blood sugar. So we got a phone that day, and we were able to be discharged Friday night. So it was very, very quick.

Scott Benner 24:52
Who the hell told you about a Dexcom on your first day?

Dr. Maggie Mueller 24:55
So the diabetic educator said that, you know, one of the things they were waiting And they wanted to make sure that all the prescriptions were going through. And, you know, they had put the Dexcom prescription through. And so, you know, once we had the phone, she was going to come in and show us how to use the Dexcom.

Scott Benner 25:11
Okay, well, he had it on his first day. Yeah. So that I'm very

Dr. Maggie Mueller 25:16
when I hear people say that they left the hospital without a Dexcom. I mean, I'm floored. I don't know how you would deal with that.

Scott Benner 25:23
Can I ask you? I'm sorry, I some people find this very personal. But I'm just very interested because you had it on the first day. What's his a one c three months later?

Dr. Maggie Mueller 25:33
I think it probably was like in the sevens I want to say it's

Scott Benner 25:38
fair. Has it gone down since then? It has

Dr. Maggie Mueller 25:41
I mean, and that was another thing. So we didn't start off on a pump right away. I think it was probably six weeks before we got on the dash. And then I remember in June we got on the Omni pod live. Yeah. Omnipod. Five.

Scott Benner 25:56
Yeah. And that's just this past June. So he had diabetes for a few months, maybe a couple of months, MDI, then using a manual pump with Dash and now for the last four or five months, he's had an algorithm. No,

Dr. Maggie Mueller 26:10
sorry. So it was he was on dash, I think in April, right after his diagnosis. And then June after his diagnosis, we switched him to Omnipod. Fi

Scott Benner 26:19
Oh, that quickly. Okay.

Dr. Maggie Mueller 26:20
I was really like, I really wanted that, you know, immediately for the, for the night, we had a lot of lows with the dash and nighttime.

Scott Benner 26:27
So how'd you find out about the algorithm? I'm

Dr. Maggie Mueller 26:31
sure I mean, my husband and I both listened to your podcast a lot. I think we found out a ton of information. Also, you know, very, you know, we're very thankful for this. So at the time Hudson, one of his hockey teammates, his older brother, I did not know this beforehand, but his older brother had type one diabetes, and think he was 13 at the time. So I had spoken to the mom, once her son had seen, you know, us doing some I might have been like giving him some insulin or something like that. And so we learned a little bit more about looping because her son was looping at the time. And that sounded very intriguing. But I think we were so overwhelmed with everything at that point in time, like, there was no way that we were going to be able to figure that out. I understand that. Yeah, kind of where we were. And I also was just trying to understand, you know, what the hesitancy you know, right after diagnosis to getting a kid on a pump, I didn't really understand why there's any waiting period, like, Why was there any MDI for, for whatever purpose, and I understood, like, you have to know how to do that for backup, but it just seems like if there's a better way, why wouldn't we be pursuing the better way? So that was, you know, difficult for me, you know, as a parent to, to know that there was something which I perceived to be better. And it wasn't really clear why we couldn't start with that right off the

Scott Benner 28:00
bat. I keep thinking that I would have loved to have seen the Apple employees face when he was like trying to be upbeat with your husband use Excel, you get a new phone. Hmm. Just take the credit card, and let me get the hell out of here. Yeah, this is not a big happy moment, my friend. Did. That's crazy. How did you find out about the podcast? Actually,

Dr. Maggie Mueller 28:20
someone who was on your podcast, who actually lives in our neighborhood, told us about the podcast. So she was on the podcast where her daughter was diagnosed. Yeah, camp in Maine. So

Scott Benner 28:35
oh, oh, yeah. And she had the flight. I mean, that person lives in your neighborhood,

Dr. Maggie Mueller 28:40
where she lives like, you know, I live we live in Glencoe, it's very small. So it's like 8000 people. So

Scott Benner 28:45
well, that's even crazier. Maggie, I interviewed somebody that lives in a group of 8000 people and they know you and they helped you with your diabetes, pretty

Dr. Maggie Mueller 28:54
high. And we meet we met all these people kind of around the same time. So you know, Hudson, he didn't he might I think he took a week off of school. And when he went back, he was first he didn't want to tell anyone the teacher asked Do you want to tell your classmates about and he said no. And then he reconsidered. And then I heard later that day from a mom who was in who has has a daughter in Hudson's class, who she came back home and told her parents that Hudson has type one diabetes because her parents have type one diabetes. So then they reached out and kind of set us up with I mean, I think we had like three to four people, at least that we were speaking with, right off the bat, you know, in our in Glencoe, and then another person that was kind of, you know, we called her like the diabetes fairy who was also in the community and was helping us a lot in the hospital and making sure that we had like the the right lens sets and things like that. I mean, I'm very thankful and we're all very grateful that we live in such a supportive community. But yeah, we had a bunch of people to talk to right off the bat that either had type one Diabetes themselves or their children habit. So

Scott Benner 30:02
between the people you were lucky enough to meet, and this podcast, and doctors, where's the most help come from?

Dr. Maggie Mueller 30:12
I think we all would have been really struggling without the support of the community that, you know, these, I think there were four or five individuals that were extremely helpful. And that pointed us in the direction of the podcast that just allowed us, you know, we learned so much about it. And you know, Tyler is not medical. So he learned a ton about it. You know, we listened to it all the time I left I listened to it on the way to work. I mean, it was it was really helpful. I think it's a hard pill to swallow when you leave the hospital, we left the hospital. And we were set up with an endocrinologist in three months. And that is really scary. Yeah, the team was great. I mean, we called the nurses when we know when we needed to check in and they would change things, but it was really nerve wracking, not having, you know, that appointment for so

Scott Benner 31:08
long. Yeah, that's actually kind of uncommon for for children. Yeah, for adults, it's very common, but for children, it's not usually.

Dr. Maggie Mueller 31:18
Yeah. And we're also lucky because our endocrinologist lives in our neighborhoods. So we did have that, you know, she's, she's been very helpful and was able to expedite everything. And, you know, she's our neighbor. So we've benefited a lot. Do you

Scott Benner 31:34
kind of see the podcasts and, and people as sort of one group, like a community feeling? Absolutely. Yeah. Okay, so not only is it a three month wait to get to the endocrinologist, by the way, you don't have any poll. What happened there? Geez, Oh, yeah. What good is that Tina? Doctor?

Dr. Maggie Mueller 31:49
Oh, I know. I know. Well, that I think is what really made me very nervous for lots of families. So

Scott Benner 31:56
that's my next question is how do you think that people who aren't you fair in this situation?

Dr. Maggie Mueller 32:02
Yeah, not Well, I, it was really eye opening. I'm a quality of life surgeon, I deal with zero things that are life threatening. But we have these metrics where like, I need to be able to see a new patient in one week, or we get dinged, I just didn't understand how, you know, a child with a life threatening illness was given an appointment, three months later, that seemed kind of crazy to me. And I, we are thankful that we have connections and great people to advocate for us. And we were able to get in there sooner. But I realized that many people don't. And even you know, they might not have the background information that we had. You know, when you?

Scott Benner 32:45
God, does that happen? Maggie? Do you get the doctor three months later and find out, you've learned more in the last three months? And they're able to tell you?

Dr. Maggie Mueller 32:53
I mean, I think that we, by the time we ended up seeing our endocrinologist, we were I can't I don't even really remember the first appointment that we went to anything. We were just trying to understand what exactly did we need to do in order to get the pump? I mean, I feel like that's what the entire

Scott Benner 33:13
it's about how to how to get around the insurance system. Yeah,

Dr. Maggie Mueller 33:17
it was just you know, what steps needed to happen in order to get the pump? Did

Scott Benner 33:22
you have to ask any questions at that point? I mean, you're still a seven a one, say seven and a half. So you're not like killing it or anything like that. So did you come in with questions that they were able to answer for you? Well, I

Dr. Maggie Mueller 33:34
remember. There was a great at the time, the the nurse that was there. I feel like she also had type one diabetes. Or she might have Yeah, I shouldn't. She was the nurse educator that worked with our doctor, she kind of leveled with us a lot. But a lot of the problems that we were having with the MDI was just, you know, he, he would basically just not want to eat anything that required an injection. So he would come home from school, and you know, he probably wanted to eat a snack, but he didn't want to eat any he didn't want a cheese stick or a salami stick. And I don't think that he wanted to have an injection. So he would just say that he wasn't hungry. And then other things that are so much better dealt with, with a pod or pum. You know, when he was going to have anything that required split dosing. He was also very difficult because he would not want to have a second injection, right. So we were struggling with these things that I think when you're talking to somebody who's been on a pump for a really long time, it's almost hard to even like remember oh, how do you deal with all that?

Scott Benner 34:47
Yeah, you know, the other day Arden started using I'm not going to talk about this on the show why the hell not? I wasn't sure if I was ready or not for this one, but I can I can say this much about it for now. they'll have enough details to be more valuable at the moment. But Arden began using a GLP the other day. And it's just the first injection. And I know I've talked about on here enough that people who listen no Ardennes, like, doesn't like needles. Yeah. And as a matter of fact, she has given herself one insulin injection in her entire life. That's that maybe as a little kid, but like, she's one that she recalls. And she was getting ready to go away to college. And I said, Listen, in case there's a catastrophic failure of all of our technology, I need you to be able to inject insulin. Yeah. So your next correction today, like go ahead and draw it up in this syringe and give it to yourself. And I'm still trying to get her on here to talk about that process. But I'm telling you, she sat in the bathroom with the door closed for 90 minutes before she came out and said, I did it. And she she looked like she had a run with the bulls. By the time she came out, like like, she just she just came out like she was in a car wreck. Then a bull chased her, and then someone picked her up in a helicopter and dropped her on the ground. And then she was alive somehow. And she's like, I did it. I'm dead. I did. I did it. And I'm like, Oh, okay. So the other day, she has to get this injection. And she's like, whoa, whoa, whoa, whoa, whoa, whoa. Like Arden Come on. And she did it. And it wasn't that big of a deal. But I'm going to tell you that she defended herself three times with her hand, as I came in with the the GLP pen. Yeah, like, like, not like harshly, but she reached out and defended herself, like almost uncontrollably. Yeah. And so I get when people don't want to, I daughter's had diabetes for 15 years. I get when people don't like needles, you know, like I really do. And she still, every time she answers something, she's like, Oh, come on. And I I've come to realize it's not about the pain. It's about she just, she's averse to the process. She just really is. So but but for people to hear the real story here is there are people, children, adults who are not eating the way they should, because they're trying to avoid injections. Oh, for sure. Yeah. And that's, you know, a tough fact, but needs to be heard by by physicians. I think I'm sorry, I took you off balance there. But

Dr. Maggie Mueller 37:16
no, that's, I think another thing and I think we're all really, you know, everyone, but specific, specifically physicians, nurses, we're just always very careful about what we say and, and now we know how careful we need to be when we were in the hospital. I think it was a diabetic educator who told me that, you know, there 95% He had sure he has type one diabetes or diabetes, but there's a 5% chance that he doesn't. And so I was like, waiting at home to hear what these antibody results were because I thought that it meant there was a 5% chance that we were wrong, and he doesn't have diabetes at all. And so they called me back to let me know that like every single antibody was positive, but also Oh, yeah, he has hypothyroidism too. But we were told that over the phone, because obviously we'd been discharged from the hospital there. Whoever called us said, Well, it's Don't worry, it's not as bad as type one.

Scott Benner 38:18
Person call to go, Hey, I'm just calling with test results. You have hypothyroidism, but don't worry, that's not nearly as bad as type one. And you're like, Oh, we got that too. Thanks.

Dr. Maggie Mueller 38:26
At that time, I was crying. You know, it was just like another thing. And I know that it's not as bad as type one diabetes, but he also has that

Scott Benner 38:37
look harder at the chart before you try to make me feel better.

Dr. Maggie Mueller 38:41
There's just like, oh, gosh, you know, it's it's just one of those things like I was clinging on to this potential 5% chance to have diabetes 5% chance that it was what I think they meant looking back at it, I think they meant type two diabetes, because they hadn't gotten the confirmatory antibodies back.

Scott Benner 39:00
Oh, that's not that. So you took way more hope in that than they meant? Oh, yeah. I

Dr. Maggie Mueller 39:06
thought the chance that he was like, fully misdiagnosed, and this was going to be not happening.

Scott Benner 39:11
Yeah. Have you ever heard me talking about when that happened to me? No, I didn't had this weird honeymoon. Oh, it lasted like two and a half or three days, where she just needed her Basal insulin and nothing for food and was getting low. And I I waited like two days into it. I called my friend who's a pediatrician. And I knew by the way, I knew it wasn't true. But I wanted it to be true so badly, but I I hedged my bets, and I started the conversation. I wonder if he remembers me calling him and I said, I know I'm wrong. Just tell me to get off the phone. But here's what's happening. Is that possible? Arden doesn't have diabetes, and he's like, She's had it for like, two years, or like, like, it'd been like a long time and he goes, No, no, no, she has diabetes. And I was like, Okay, thank you. And he goes, hang up, and I'm like, I will and I just got off the phone. But I had that feeling I know The exact feeling you're talking about. Yeah, like when you've got a scratcher in your hand, and you're like, I'm not gonna work again, if this is just the club dammit. Exactly. Yeah, no, it's terrible. Oh, I'm so sorry.

Dr. Maggie Mueller 40:13
No, no. And then after that we're off. It was my, you know, I really I had heard about to prism app and the trials that were going on. So I was desperate to find, you know, a trial that was still enrolling, you know, so I knew that University of Chicago was a site. So I emailed all the people there. And it, it just so happened that they had stopped enrolling his age group, you know, a couple months beforehand. So then I was devastated that we didn't have that option. So there were just a lot of ups and downs in that period.

Scott Benner 40:45
I think guilt in here. When you he has hypothyroidism Hashem, as you do, too.

Dr. Maggie Mueller 40:50
I don't think I even put that together. I think that oh, sorry,

Scott Benner 40:54
my introducing this for the first time for I didn't know, I mean, that that

Dr. Maggie Mueller 40:57
period of time? I don't think I did. You know, I think probably honestly, when we were in the hospital, and somebody if anyone asked about auto immune, I don't even think we both Tyler and I would have come up with a, you know, he probably wouldn't have talked about vitiligo, and I probably wouldn't have talked about hypothyroidism. You know, I've had it for so long, and I just didn't, it's like a vitamin

Scott Benner 41:17
you take out, I would imagine at this point. Right. Exactly. Yeah. And

Dr. Maggie Mueller 41:21
so there wasn't, you know, a lot of guilt. I think that, again, being so close around COVID. So I remember when we were leaving to the hospital, my mother, who I also love to pieces, you know, said Do you think this has something to do with the COVID vaccine? Because I Kittson vaccinated so that they go back to school. And so then I carried this guilt around that potentially, it was the COVID vaccine that caused the type one diabetes. So, you know, I had to be the person in the hospital to ask the doctor like the embarrassing question, you know, is this at all related to the COVID vaccine? And a remember her saying this is probably based on his a one see, it's probably been going on for a year or so, you know, and he had had the COVID vaccine, like a couple of months beforehand. So then that reassured me a little bit more.

Scott Benner 42:14
I mean, honestly, if there's anything there, I mean, maybe the virus from the vaccine, like sped up the process, but it sounds like the process has been going on for a very long time. First of all, and, you know, I mean, viruses do bring on diagnosis, but they don't, it's so hard to, to know if people understand how that works or not when they hear it. It's it's not I sneezed. And so I got type one diabetes. Yeah, these pieces cause type one diabetes, it's, I was going to get type one diabetes. And did you notice these this speeded up? Yeah, that's the vibe. But what you hear people say is, you know, a virus has caused type one, viruses don't cause type one viruses can cause type one in people who were predisposed, and already at some point in their life, likely going to get type one diabetes, and so different, like, I guess it's like, once you have it, it's who cares? What came first, but it when it's spoken about, it gets spoken about colloquially? And I think it just gives people the idea that oh, you know, you just get a thing. And then that happens. Like it's cause and effect. But it's, it's not it's hard to? I don't know, it's hard to explain sometimes. Well,

Dr. Maggie Mueller 43:27
yeah. Especially because there is this increase. And so people oftentimes ask, you know, why are there so many more kids with type one diabetes now? And I think everybody does want to have an explanation. And then it gets this game of telephone and all of these potential things that cause type one diabetes, when

Scott Benner 43:44
somebody says to me, what do you make of all the type one increased diagnosis during COVID? I say, yeah, there's a lot of people out there walking around with antibodies, who at some point in their life, we're going to get type one diabetes. And it just so happened. There's a virus covered the whole planet, and so they all got it at the same time, doesn't mean COVID gave them type one diabetes, right? Yeah. And so I don't know, it's just a hard thing. And then people, they don't like to believe some, some people are like, No, that's not what happened. I'm like, Okay, I don't know what to say, you know, so. My daughter had Coxsackie virus, and got type one. If I say that on the podcast, three episodes in a row. I'm gonna get five emails about like a day about oh, my kinetic coxsackievirus probably got type one. Yeah, it's a virus. Get your kid just like my kid had antibodies. They got a virus and their immune system was like, Hey, I'm confused. And then, you know, here we go. So exactly. It's kind of what it is. Socks. I'll tell you that much. He's doing well. Hudson is right. Yeah. You know, needle phobia is like, that's that's not an issue with pot. You think if you went back and needles though, do you think he'd be like I'm not hungry? No, thank you. Yes.

Dr. Maggie Mueller 44:56
So we've had, you know, a variety of incidents that have required I heard, you know, the potential for injections. So most recently, he was in a sailing camp, I bought some very expensive, waterproof family fanny pack to keep his phone and PDM min, which works very well, if you zip it closed. You know, he's uptick closed, or he thought he's uptick closed, he, you know, capsized. And, you know, this was, I had sent him to a sailing camp, which is about an hour and 15 minutes away, my parents have a house on a lake there. And, you know, that's where the Yacht Club is. And he was sailing there. But I was working in Chicago. And I get a call from my mom that this happened. She's gonna take the PDM home and put it in the dryer to see if you know she can. Because it wasn't working. So obviously I asked her not to put it in the dryer,

Scott Benner 45:56
I was gonna ask which one of your parents you took after being a surgeon? But I think you might be adopted? Yeah. Very

Dr. Maggie Mueller 46:04
helpful. And, you know, trying to do the right thing. But obviously, it was very much broken.

Scott Benner 46:11
Thank you. What if I put the phone on the grill and see if I can dry it out.

Dr. Maggie Mueller 46:14
I mean, it wasn't even like rice or anything. It was in the dryer. It didn't go in the dryer. But I told her, you know, if he's going to, I knew it was this last day of sailing, and there was going to be pizza. So I said, you know, he's gonna need an injection if he eats anything. Okay, yeah. So I get in my car, we actually had a backup PDM. Thankfully, I get in my car to go to manage that, which I also was listening to the podcast at that point in time, because I had to reset the PDM. So I was wondering, like, what did I need to change based on the algorithm? What should I put in? So I was, you know, taking the Crash Course. And I think there was one episode that you had that was resetting that some something similar had happened, and someone was talking about how they manage that, right. But the long story short, you know, he was told not to eat before getting an injection. And, you know, I got a picture on my phone for my mom, which showed like to half eaten pizzas and pieces of pizza and a popsicle or something that he just went ahead and ate without, you know, taking any insulin for

Scott Benner 47:16
did he do that on his own Maggie? Or did your mom not have the fortitude to stop him? Do you know what happened? Will you ever find out?

Dr. Maggie Mueller 47:21
Yeah, I think he was by on his own and just made a conscious decision that he was going to eat these pieces of pizza and have this popsicle without any insulin, then his blood sugar was course, like over 400 He ultimately, you know, they convinced him to take an injection. And then, you know, I was able to restart the pod and get things working. Yeah,

Scott Benner 47:44
about that. Jeez, yeah. Oh, good times. You say here that you sent me a note before you're on. He said physicians need to know that this is a chronic disease that requires constant manipulation and reliance on pharmacies, technology, doctors, nurses, and all this can change. And that also all affects the aspects of your life different aspects of your life. I wondered, do you have a message? Like if you if you could talk to other physicians? And are you talking about and those and everyone else or everyone else?

Dr. Maggie Mueller 48:18
I think it's I mean, I do think that endocrinologist probably know this best that it does take so much care coordination. I don't think many other physicians know that. You know, they see like, Oh, you're on a prescription for insulin, like make sure you get your prescription for insulin. But there are so many other things that go into this. And I also think like there was absolutely no way I did not know, I really I think we both Tyler and I struggled with this, we thought it was a mathematic equation, like I'm going to eat this many carbs, I'm going to cover with this much insulin and like my blood sugar will be perfect. And we had no idea that there were variables that existed that were going to make it so that no meal will ever be the same. No activities ever gonna behave the same. I had no idea about that. And I don't think a lot of people know about that. Let alone you know, like, specific. Maybe endocrinologist but not other physicians for sure. And I think it's, you know, easy to say like, why isn't your hemoglobin a one C better? Aren't you taking your insulin? There's just so much more to that. I add the way that this affects caregivers, the actual patient that has diabetes, there are a lot of you know, I we have Hudson, I would describe as happy go lucky type child. When we left the hospital that day, he asked, you know, he was super excited to leave the hospital. And his comment was well, because I don't have to take another shot. You really just don't understand what you're dealing with. And the amount of rationalization that can happen but also the way that it affects just, you know, he wanted to be a normal kid. He wanted to keep playing all the things things that he did, I think that we had him in a hockey game the night, the morning after he was diagnosed from the hospital, and we were trying to manage his blood sugar, you know, less than 12 hours outside of the hospital in a hockey game, it really does affect kids, it changes everything, you know, he has to go to the nurse and carry this bag and all these things that I think that Ty and I were like, well, this isn't gonna change your life at all, we minimize the fact that it definitely has changed your life, and you have to do things a little bit more or sometimes harder than some of your friends do. And I think that that was something that we neglected to validate, I guess,

Scott Benner 50:38
who says to you, you mentioned how come your agency, isn't that better? Why certain range? Are you not using it? It's on Have you gotten messaging like that? From doctors? Who does that? I

Dr. Maggie Mueller 50:47
mean, I've probably been someone who said that, as a doctor, you know, just being completely naive about what is required to improve your hemoglobin? Anyone see, I mean, in my field of work, it's elective surgery. So I never operated on anyone with a hemoglobin anyone see of under over eight, that was like a hard cut off. And, you know, we would cancel surgeries. And I think I probably did have an attitude, like, in a nice way, but you know, yeah, you need to get your hemoglobin AOC down better and like, are you taking insulin, I mean, it's

Scott Benner 51:26
just very never occurred to you to say, This person is struggling, maybe I should help them get their agency down. Like, that's just that's not how any of this works, right? Like, it's Yeah, they'll have to figure that out.

Dr. Maggie Mueller 51:37
Well, like, um, you know, work with your endocrinologist or work with your primary care doctor. And honestly, probably, neither of those things is going to change things that much. They just needed to, you know, there were probably many things that were affecting their hemoglobin a one C, and I just, I was blissfully unaware of all of the different things that need to happen in order to successfully manage diabetes.

Scott Benner 52:02
Can you explain to a regular person, a person who is not a physician has not going to medical school doesn't work in a hospital, doctor's office, etc? Why it is that they shouldn't expect their surgeon who's going to work on their pelvic floor or whatever, to understand diabetes? Why do other doctors besides endocrinologist, not understand type one. I mean, they don't understand a lot of different things, and which you and I understand to be reasonable, but to the outside person, just a regular person who looks up and says, that's a doctor. Why in the hell don't they understand? You're very in a very siloed profession, is that correct? Yeah,

Dr. Maggie Mueller 52:40
I'm, I'm like, I always tell people, I do like seven surgeries. And that's it. So I'm so siloed. And I also, you know, I don't have a background in Internal Medicine where we would probably, you know, practically learn so much about that. So I'm relying on things that I learned in medical school. Lots has changed, right? I mean, we don't the insulin is different. Pumps are really mainstay now. So it's really difficult for people who are not in it every day to be keeping up with this. And I think yes, I would hope that doctors have a cursory understanding of type one diabetes, I think most of them could tell you the difference between type two, they could probably come up with some other types of diabetes. And certainly they know that when your blood sugar is high, you need insulin, when it's low, you need sugar, which, you know, that seems like that's

Scott Benner 53:33
acute stuff. And that's probably all they know. Yeah, yeah. Also, I did not mean to use a mean to use, I did not mean to use a douchey corporate terminologies just that silo just means like, Oh, I just realized when I said I was like, That's just the thing I hear my wife say,

Dr. Maggie Mueller 53:49
No, it did come off to me that I am really siloed. For sure.

Scott Benner 53:54
When you're so isolated, I guess the like a more of like, a more real world way of saying it might be that I don't know the offensive lineman on your favorite football team doesn't know what the cornerback is doing. And yeah, they're not only don't they play corner ever, but they're not even in the defensive meetings. They don't even know what the defense is doing. They know what they're doing. They've learned a job and they do it over and over again. Just like you I run block for the left, I run block to the right I pass block for the left or but like You're like I do seven different surgeries. Like it's fun to say like what kind of doctor are you again?

Dr. Maggie Mueller 54:29
I'm a Euro gynecologist, reconstructive pelvic surgeon. It's a mouthful,

Scott Benner 54:33
I'll see. But when you say that also, there's a joke in there. It's inappropriate because you're such a nice person but like, I hear a lot. But but like there when that's your title, and that's what you do. And then I hear you say in plain English. I really only do seven different surgeries. I bet you that's not a thing people would think of you they probably think you're a magician. A wizard. Do you know what I mean? Because of that title and how long they in their mind. They believe you've gone to bed Medical School. I mean, what? Think about it what you do it you did your undergrad on

Dr. Maggie Mueller 55:04
time in medical school for four years. I did a residency for four years. And then I did a three year surgical fellowship.

Scott Benner 55:11
That's 11 years. Yeah, yeah. Okay. So you went to school for 11 years to learn how to do seven surgeries? Exactly. Yeah. And then if I say to you, how does type one diabetes work? You go, sugar makes you high insulin brings it down. Type One is, I think it I think it might be genetic. Is it auto? I think that's where you'd be stuck. If I if I went and found you three or four years ago, right?

Dr. Maggie Mueller 55:34
Yeah, I would have known that, like I would have associated type one with insulin dependent. Like, that's what I would have associated at the time.

Scott Benner 55:41
Okay. Now, I'm going to ask you to be I don't know if this is fair or not, we'll see if you're comfortable doing this? If I asked you to. So there, we've addressed why most people in the medical field don't understand it. It's not something that no, but if if people are, are with an endocrinologist, or nurse practitioner for diabetes, these kinds of like jobs, and they're not getting good information from them. How does that happen? So even take it out of diabetes, like forget diabetes, just like I shouldn't have asked it that way. How does it happen that some doctors with 11 years of practice, still aren't very adept at what they're doing. And how common is that?

Dr. Maggie Mueller 56:25
I mean, I can't really speak for, like diet, I've we've had such a good experience with our endocrinologist and I don't have enough experience with, you know, I hear some things sometimes like on the Facebook podcast, and it is concerning, like, I don't really know, why some would be less, you know, forthcoming or are in the mix. In my own specialty, I think that, you know, we this, you it requires my specialty requires fellowship training, that three year training, and also boards that are certification in this fellowship. So it's a sub specialized board certification, and I think, possibly, if I had to guess, maybe the people who are getting that subpart care or are just not seeing those specialists, could

Scott Benner 57:17
it be a communication piece, because it occurs to me as you're talking, you don't have to communicate to anybody to do your job really well. Like you don't like, you'll sit the person down and say, look, here's what we're gonna do, you know, this is what's happening. I don't know how you say it in your lady parts, and we're gonna do this. And then and then we're gonna do that. And this is what's going to alleviate, it's going to bring this to your life, it's gonna take me about this long, here's how long recovery is, you know, I have a buddy, you probably then you probably brag about, like your infection rate being low or something like that. You kick them out of the room, and you put them on the schedule, you do the thing for him, and they end up okay. Not you know, more,

Dr. Maggie Mueller 57:53
more of I don't have many long term relationships with my patient, right.

Scott Benner 57:56
But you don't have to explain anything to them for them to maintain that work that you've done for them. So you're more of a Gosh, I don't mean this pejoratively. But you're more of a, you're swinging a hammer. Really? You don't I mean, yeah, yeah, yeah. Whereas I'm expecting. I'm expecting an endocrinologist to help me with my diabetes by being able to initially, initially communicate what I need to know, to watch me grow or not grow and re communicate things or move me along and teach me and to picture what's happening when they're not around, and then accurately make adjustments to me without barely even being able to see what I do day to day. And some people are good at that. And some people aren't. It's more of a job of communication than it is of of medicine, isn't it? Oh, yeah.

Dr. Maggie Mueller 58:48
And I think that there are so many constraints right now on people in the medical profession, you know, physicians, nurse practitioners, etc. I mean, when I'm at those endocrinology appointments, the amount of stuff that has to happen, there's a lot of stuff that has to happen, you know, they review the, the Dexcom reports and things like that, and then all the preventive stuff. I mean, there's just so much that happens. So maybe focus gets lost on one area more than the other, or there's just not time spent doing some of those things with you. I think the patients also have to kind of understand where the problems are, too. Yeah. And that's hard, too. It just requires so much patient education.

Scott Benner 59:31
But fair enough, though, part of your success for your son is that you're engaged, intelligent, paying attention, you know, asking questions, going out on your own and finding out more information, you're actively participating if not directing his care. Yeah,

Dr. Maggie Mueller 59:47
I would say both Tyler and I are very active in his care. And, you know, even you know, identifying things like you He's struggling with, you know, the fact that he's different and things like that, and what do we need to do to address that? That has been? We've been able to address that. And I'm thankful that we were but yeah, I say, I think that if we weren't in tune with him that probably wouldn't have been identified.

Scott Benner 1:00:17
Yeah. Actually just made a note for myself for a different series, because it occurred to me that while it would not be easy to hear, for some people, it might be interesting to get a an anonymous doctor on a whistleblower X episode and have them whistleblow on patients, like telling me like, what what is really standing in your way if he didn't have to be polite? What is happening? Like, what are you battling against when you come into your job every day? Because fully Yeah, yeah, cuz I bet you that. I bet you that's, that would be eye opening for some people, too. Yeah, it just so that's interesting. So most physicians jobs don't require communicating directions beyond maybe a for the first 12 hours, put ice on this every three hours, or, you know, this is what this is going to feel like after your surgery. But don't worry, you're gonna come back and I'll check you if everything's good, you'll be alright, in six weeks like that. That's how most of this stuff goes. And that's our expectation is people because most of our medical problems have gone exactly like that up until you get a chronic illness.

Dr. Maggie Mueller 1:01:19
Well, yeah, and I think the other thing is that it's like an endocrinologist is kind of the directing the care, right? There's many other players of the team that provide information that's probably, you know, very, very helpful, like the diabetic educators, they feel such a huge role. And it does take off some of the burden from the endocrinologist and I think I think someone was asking me, like, you know, my endocrinologist doesn't seem to know a lot about how the different pumps work. And it's like, Well, how could your endocrinologist know every single aspect about every pump that's available? That's why they have other people on their team to help with this. It's just, I think people might have an unrealistic expectation about how much one single person can do maybe

Scott Benner 1:02:06
is it? Is it unreasonable for me to expect that my endocrinologist spends a weekend figuring out the three major pumps and how they work? Well,

Dr. Maggie Mueller 1:02:13
I think the three major pumps, I think that the endocrinologist do know that they probably know one more than the other, they're, you know, more familiar with it for whatever reason with their patient population. But they're, I mean, these pumps are really intricate and lots of different. If you're asking, like, does this one, what about the, you know, I mean, first of all, the Omnipod five algorithm is still very mysterious. And I think that, you know, you, a lot of people don't know exactly how everything works, I think you you know a lot about how the algorithm works, but it's all proprietary, right. And there are small, little tiny things that you can tweak that some endocrinologist probably know about, but I don't know if everyone knows about that,

Scott Benner 1:03:00
you know, again, it comes down to communication. And because I have this story rattling in my head that often tell you, so you'll know it, but I just had a person online tell me or was it in an interview, someone told me, they were, you know, kind of wrapping up their endocrinology appointment? And the doctor said, Hey, could you spend a couple of minutes longer? Right? Can I ask you a question? And the person's like, yeah, what do you need to know? And the doctor said, Can you explain how that pump works to me? And that, like, shook that person's confidence to their core about their doctor. And yeah, you know, but and I wonder if it wouldn't be as simple as saying, you know, because I don't live with diabetes. And I'm only getting information, you know, from people in the short visits. Could you spend a couple of minutes with me, let me ask you a few questions about the pump, I'd like to dig down and get more information. If if it was just said that much differently, then the feeling that that person left with wouldn't have been what it was, and the feeling they left with was, Oh, my God, my doctor doesn't know what the hell they're doing that because that's the feeling they left with. And I wonder if that now was true. Or if the doctor just didn't do a good job of explaining what they wanted? Like, I don't I wasn't there, obviously. But yeah,

Dr. Maggie Mueller 1:04:11
yeah. I mean, I would have before you explained your real, you know, rationale for probably why that happened. I would have probably thought the same thing. I bet that that doctor was trying to say like, Hey, you know this best because you deal with it every day, you're the expert, like what are some of the things that I need to know to better take care of my patients, but not all doctors are really good communicators? You know, they're, I think there's a lot of room for improvement in communication, just in general, but I suspect, you know, doctors all want to help people and treat people that's why we become doctors. They don't want to be, you know, providing some therapy that they don't understand how to do and I'm sure that that endocrinologist or physician didn't wasn't prescribing something they didn't know how to use. They just probably wanted that Patient Experience aspects.

Scott Benner 1:05:01
I wonder that too now that I think about that way, you know, I think in the end, I think it is what it is. I hate to say it like that. But I there's people running around all the time, like, how are we going to fix this? How are we going to get doctors? I'm like, I don't think you're going to change anything. I think it's human nature. To some degree, there's gonna be some better ones than others, there's going to be some bad ones. There's going to be some fantastic, you know, people that you meet along the way. And that communication. I mean, listen, if if communicating was something everyone was good at, I don't think the divorce rate would be one and two. So like, you know, like, yeah, people are not great communicators in general. And just because they're doctors doesn't make them better. And I don't know that there's a Listen, I'll say this. I think I'm a fairly good communicator. Yeah. I don't know that I could teach it to somebody, though. You know, I mean, like, I'm not sure how to do that. Like, I think you learned from the podcast, because I have a way of speaking about what I do. I do a good job of speaking about high level stuff. But it doesn't feel high level, I don't talk over your head, I don't actually have the ability to talk over your head, which is, which is really helpful. Because who knows if I would or not, but I understand this topic really well. I speak in pictures, which I think people find helpful.

Dr. Maggie Mueller 1:06:13
Yeah, but you also have the empathy, like you, you knew where you were, and like you're trying to communicate to a person in that position. Yeah, that

Scott Benner 1:06:22
helps as well. I guess it's funny, I, I don't even know why I'm a good communicator in this specific situation, like, so I don't, I guess what I'm trying to say is, I don't know how we could expect some maybe rigid guy or like, you know, some, some person, or some woman who's a little, I don't know, like, particular or whatever, like, you know, like, people's like, personalities are all weird and different. Or maybe they're very engineer brain like, and that's why they're a doctor. And now all of a sudden, we're expecting them to like get down on your level, commiserate with you understand this really complex thing and be able to communicate back the way to handle it. Maybe it's just not ever going to happen.

Dr. Maggie Mueller 1:06:59
I mean, I think I have a rosier outlook. I will I mean, I just, I am really a glass half full type person. And I think that, first of all, having people hear these experiences is is really important. Again, I really, I think that if doctors heard that, you know, they potentially their patients weren't getting, seeing the results that they wanted to. And we think that it's related to communication, I think everyone would want to fix that. I just think that there are so many constraints right now. And they're, you know, it's easier to say like, well, I am going to concentrate on the medical things like make sure XYZ, and I have this diabetic educator who's really going to help with like the day to day, all that other stuff, and a lot of the education and a lot of the communication. And then this nurse is going to do that, too. So I think that some of it does, unfortunately get parsed out to other individuals. And perhaps maybe that's why, you know, the the lead physician is really being seen as not communicating all that much. And so I guess maybe more of a team based approach might change that perception.

Scott Benner 1:08:14
Okay, yeah. I'm gonna ask this question a lot of physicians this year on the podcast, but what do you think of my idea about group instruction?

Dr. Maggie Mueller 1:08:22
Well, I think that's great. That would

Scott Benner 1:08:25
work right, instead of coming in for 15 or 20 minutes or half an hour at a time. What if everybody showed up and it was two and a half hours long, and it was a, you know, it was partly a q&a. And then partly, while you know, you could go off to the side and private and do whatever you needed to do with your physician while the q&a was going on? Like, I think that would be such a good idea.

Dr. Maggie Mueller 1:08:43
Yeah, well, I mean, that's definitely been shown. There's research behind that. I'm not familiar with the diabetes research. But in small group education in different disease states, there's a lot of research to, to support that. And I believe that they do something similar at the University of Chicago, I've seen flyers for diabetic education, they meet in the cafeteria and things like that. So there definitely are. There's a lot of research to support that. I think that's a fantastic idea.

Scott Benner 1:09:14
Okay, yeah, I mean, I keep thinking over and over again. It's this one simple idea that I have if if me, I am a person who listened between you and I, Maggie, you went to more like secondary school than I went to like, regular school. So I barely like crawled out of high school. I was, I was not an interested student. I did not grow up with a family who told me to be interested in academics. Yeah. And I bet like when I graduated, I was like, huh, a trick somebody. And somebody right now is not doing their job given me this diploma. And I, and I'm out in the world. But somehow, there's no other place. Right now. Like Like, I'm sure there are hospitals that do great job. I'm not saying that there's no other place. I'm saying that that visible publicly, I speak to more people with diabetes than anyone else on the planet. Yeah. And it doesn't make sense sometimes, other than to say that this format works for a lot of people. And that the one thing I think I've done, that I think everyone could do is that I've boiled diabetes down in my own head when I'm talking about it into a formula that anybody can understand what I'm saying it. And mostly, what it gives them is a very firm base to start with. And it leads to outcomes and understanding that lead you to have, like further education for yourself like you might the outcomes I give you give you some understanding, you have those experiences, build on them, and get better and better at it as you go up to the level you desire. I imagine. And that's, I think what I'm good at, I think what I'm good at is talking about diabetes and boiling it down into understandable, digestible chunks. I think that's all I've done. I mean, if I've done more than that, I'm literally not aware of it. I don't understand why a doctor can't do that.

Dr. Maggie Mueller 1:11:16
Well, I mean, I think that, you know, part, again, part of I think, you know, on a higher level definitely brought together community. And I think that that's huge. You've definitely, you know, distilled diabetes, and made it a little bit easier to understand for lots of people, I mean, including caregivers, which, you know, that can be really hard for people that aren't, they don't live with it every day, you know, but other like grandparents and things like that. But that sense of community is really huge. And I think that comes from that empathetic, you know, whether you're meeting that aspect or not like that, certainly.

Scott Benner 1:11:55
Oh, no, I haven't. No, I know how you all feel. Yeah. I mean, to some degree, I know how you feel. And by the way, by interviewing so many people who have diabetes, while I don't have it myself, I might be one of the closer people who doesn't have diabetes, to understanding what it feels like than many people because I've had these long, in depth conversations with people I've and I am an empathetic person. So I do absorb. I do I baits are hard on me sometimes, but I do absorb how they feel when I'm talking about it. And I maintain it. I will say, I think the community aspect is insanely important. I don't I don't mean to, to minimize that. But if I was going to, if I was going to say one of the things that I think that I'm doing that is leading to the success, it is something that a doctor can't do. And well, and here's what it is. And I don't know if people know the secret or not. I put out an episode of this podcast every day. I create a world where there's always something there for you. And because everybody doesn't listen every day, like some people do. Don't get me wrong. This people are like, They're my heroes right there. I put it there waiting for a new episode. Do you have any idea how many people told me like, hey, when's this coming out? Like I don't have anything to listen to over the weekend. I'm like, Hey, I'm doing my best, you know, but, but by putting content out Monday, Tuesday, Wednesday, Thursday, Friday, and having it be a mix. This is a guy who's got type one, here's a woman who has type one who is a mom, here's a dad, here's something with Jenny, here's something with Erica, we're going to talk about the psychological sides of it, like keeping that stuff all mixed together constantly. Even if you're not up for listening to the psychological part of it. You might be up for management, you're not up for management, you might not be for you might be up for a story. There's always something there to keep you connected. And that connection is the somehow unquantifiable reason why people take good care of themselves. And I don't understand completely why it is. But I know if you're listening to this podcast, you're gonna have better outcomes. And it's not always going to be because I taught you something about care. I think that's true. And that's not something we could ask a doctor to do. No, yeah, yeah, I get it. Thank you actually now teaching me with the podcast. That's Maggie appreciate

Dr. Maggie Mueller 1:14:09
explaining the way that we I mean, it is been so helpful, and I think it is filling something and I just my view is I don't think that a doctor is responsible for that. Like it just can't happen in this day and age maybe 40 years ago. But it's it's not happening. It can't there's there's too many constraints, things have gotten too complicated. Diseases are more complicated. The management of these diseases is more complicated. There have to be other people, team members, you know, that are responsible for filling in these gaps. It's It's It's untenable for a single human to manage that is that

Scott Benner 1:14:50
over and over again, and I can accomplish it because I don't actually have to sit down with each of you individually. Exactly. Yeah, that's interesting. But it's my Yeah, I guess it doesn't work. Like even what I it's easy to say, can't you just do what I'm doing? But what I'm doing is having daily connections with people. And they can't do that either. Exactly.

Dr. Maggie Mueller 1:15:09
I mean, I think, and I think that maybe this is, you know, just an experiment in that kind of group education and checkpoints and things like that. That I do think, again, I would fully support, I think that there are probably many other benefits, you know, even seeing that sense of community in that setting. Yeah. Oh,

Scott Benner 1:15:30
it would easily start like that. Because people be like, Oh, I live around here. And they start talking to each other. And I keep bringing this up Maggie over the last couple of years, because I'm convinced that's the answer. Like for institutions. I've said on the podcast, I love thinking somebody will take me up for it, I'll come out and give the talks like like, hell, I'll come out for a week, we'll do it every day for a week, you bring in 50 people a day or something like that, and let the staff listen and hear how Yeah, awesome, yeah, but nobody, in the end, what ends up happening. And this is not going to surprise you because you're in the game. But these conversations get pretty high at some institutions. And eventually what happens is, well, you're not a doctor. So we can't do that. That's what that's how it gets shut off. Eventually, it gets to some level of the organization that goes, What's his credentials, and they're like, he almost got out of high school unscathed. And they, eventually it goes away. So I don't know, I'm gonna keep making the podcast and asking the questions. And hopefully someday someone does it. Because I think to your point you just made a minute ago, I think I've proven the point. This works. But yeah, why is this not what we're doing for people? Like, because I'm reaching a lot of people, I can't reach nearly all of them. That's not possible. So I'm reaching the people who are have an iPhone or an Android phone, have the time to listen to a podcast know somebody else who would tell them about the podcast, or have the wherewithal to look for information outside of their doctor's office? I'm already limited to how many people I can reach? Yeah. So anyway, all right. I

Dr. Maggie Mueller 1:17:02
do hope that it moves in that direction. I really do. I think it would be beneficial. And, again, I think we would feel very isolated without you know, having these. I don't know Hudson would he? We're lucky enough. Again, one of the community members, I already mentioned that the family with their eldest being a type one diabetic in hockey, they the year that Hudson was diagnosed, they actually ran the first year of this camp that's dedicated to kids with type one diabetes, that's a hockey camp. It draws from Canada and the United States. And it's doubled in size. And Hudson has friends. From this. He calls him his T one D bros from this T one timer camp. That's a bunch of kids that play hockey that have type one diabetes, and they text constantly throughout the year until they can't wait for the next camp session. And I think

Scott Benner 1:17:59
it's just really important. Yeah, that's awesome. And he's got so he's got his own little community as well. Exactly. That's great. Okay, well, you were terrific. Is there anything I didn't ask you that I should have or anything we missed?

Dr. Maggie Mueller 1:18:11
No, this was a pleasure speaking with you. And I really, really hope that your idea to kind of moves things in the direction of that group education, I really do hope that it moves in that direction, I think it would be really helpful for so many reasons, and just want to thank you on behalf of my family and where we are now. You've really been instrumental.

Scott Benner 1:18:34
I really appreciate that. If I ever have any problems with my pelvic floor, I'm going to call you to find Yeah, 100%, I will tell you this on your way out the door. I just did a live event, I was in person somewhere. And we, you know, they invite me out. And they're like, he'd come out and talk for an hour. And I was like, oh, not flying there to talk for an hour. I was like, let's, let's do this. And I proposed this big idea. I said, Why don't we do four or five hours. They're like, what I'm like are we'll give him a break in the middle of eat food. And she goes, No one's gonna stay that long. And I was like, Are they well, don't worry. And so we did. I think we meet and graded it like nine I think we started talking at 10. We did a two hour talk. And I brought Jenny with me, by the way I could I don't I don't want to take anything away from Jenny. I could have done it on my own. But I thought it would be really nice for people to see Jenny. Let's like have general you know, so Jenny and I talked for two hours about diabetes. We just talked and if I'm gonna tell you, no slideshow behind me, no pre planned idea of what we were going to talk about. She and I chatted for five minutes before we took the stage. And we were like, Let's kind of start in this direction. See where it goes. And she's like, Yeah, that sounds good. And then she's like, what about this? And I said, Oh, good idea. And then we just started we sat down, said hello. We started talking to hours, everybody went to lunch. At one o'clock. Everybody came back, nobody left. So we didn't lose anybody. And then from one o'clock, two o'clock, three o'clock, four o'clock. I think a little after that, Jenny and I just talked more into q&a live with the audience. That's all we did. And the next day, a person sent me a note and said, I don't think I've had a day go better than the day that we had after we left you and the day after, like, so the next 36 hours after leaving that talk, went so well. And we were at restaurants and traveling because we had to drive to come and see you. And all these ideas that like just being around the conversations and hearing other people's questions made lightbulbs go off for even some people who never raised their hand. And that's what I'm talking about. That's, that's what I think happens. I think you give them a podcast in person. I'm not saying every doctor's appointment should be five hours long. But if every three months, you came out for a more targeted 90 minute conversation. And then you I don't know, I don't know, I don't know how dark you're gonna have to figure it out yourself. But having that that kind of like feeling and that experience for those people, they're going to take more from that than they ever would from sitting in office and hoping that they remember to ask the questions that hopefully you have the answers to, you know, it just does it's not ever going to work that way. So anyway, I appreciate your You're very kind to come on and what you said just now was was lovely. I really do appreciate it very much. Thank you. Well,

Dr. Maggie Mueller 1:21:26
thank you so much for having me. This is wonderful. My pleasure.

Scott Benner 1:21:35
Head over to Omni pod.com/juice box to get rid of your FUBU Omni pod.com/juice box get yourself an omni pod five. A huge thank you to ever since CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever sent CGM, you just replace it once every six months via a simple in office visit. Learn more and get started today at ever since cgm.com/juicebox. I know that Facebook has a bad reputation. But please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. That Juicebox Podcast is full of so many series that you want and need afterdark s Gatan Jenny, algorithm pumping bold beginnings defining diabetes the finding thyroid, the diabetes Pro Tip series for type one, the diabetes variable series mental wellness, type two diabetes pro tip, how we eat. Oh my goodness, there's so much at juicebox podcast.com. Add up into that menu and pick around. And if you're in the private Facebook group, just go to the feature tab for lists upon lists of all of the series. always free. Always helpful. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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