#1231 Grand Rounds: Oncologist

"Alex" is the mother of a type 1 and an oncologist.

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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, welcome to episode 1231 of the Juicebox Podcast

Welcome back this is another episode in the Grand Rounds series you probably know by now in the Grand Rounds series, we don't use the person's real name and their voice has been changed to protect their identity. Today we're going to talk to Alex. She is a 37 year old medical oncologist from Israel. And we're going to talk about the health care system type one diabetes, and so much more. One of Alex's children has type one was diagnosed just two years ago. There is a lot of spirited conversation in this episode. Please don't forget that 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 or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. Hey, I'm looking for you to give just a little bit of your time. T one D exchange.org/juicebox. Join the registry complete the survey help with type one diabetes research. You just have to be a US resident who has type one or is the caregiver of someone with type one. T one D exchange.org/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 high or low. On body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next one.com/juicebox. Alex, what's your job? What do you do for a living?

Anonymous Female Speaker 2:20
I'm an oncologist.

Scott Benner 2:23
oncologist. What is and was your training like to get that job? What did you have to do where I

Anonymous Female Speaker 2:32
live? There's six years in medical school, you get into medical school right away, you don't have an undergrad, and then you do one your internship before you get your degree. And after seven years, you're a doctor. And then you have to do your specialties. oncology is five and a half years it's straight through it's been a sub specialty.

Scott Benner 2:50
It took you from the day you began coming out of out of school until you were I guess certified as a oncologist. 12 and a half years. Yeah.

Anonymous Female Speaker 3:02
Kids in the middle. So a bit longer than that. Oh, so

Scott Benner 3:05
there was a gap of time in there. You took a little time off to wear maternity leave. Yeah. Okay. All right. And now how long have you been practicing?

Anonymous Female Speaker 3:12
I finished my residency about two years ago, two years

Scott Benner 3:16
ago. What would you say? Day to day your job is like what do you what do you do most days?

Anonymous Female Speaker 3:22
So after you finish residency, it's mostly working in the outpatient clinic in the hospital. So it's same patients in the outpatient clinic. And then they get therapy in in the daycare center.

Scott Benner 3:36
So we're talking about like, let's see, okay, clinic, a clinic that does what infusions so

Anonymous Female Speaker 3:44
it's in the hospital. And it's always connected to like a big hospital, okay, like the infusion centers. So it's not like an America that they're also like smaller practices that have their own infusion center.

Scott Benner 3:54
I see. I see. So you see people for chemotherapy? Yeah, yeah. And follow up visits. If I think I have cancer. Are you a person I come to? Or are you in a difficult

Anonymous Female Speaker 4:06
situation when you guys send oncologist, you already have a diagnosis, or there's somebody already found that you have cancer, and then you go on colleges to figure out what the treatment plan should be. And for the follow up afterwards,

Scott Benner 4:17
are you a surgeon as well? Yep. No,

Anonymous Female Speaker 4:19
okay. I'm a medical oncologist, medical oncologist. Great.

Scott Benner 4:22
You said you stopped in the middle there to have some kids. How many did you make? I

Anonymous Female Speaker 4:27
have four kids. One was in medical school. One was in the internship year and two during residency. Geez,

Scott Benner 4:34
I must have made it harder. No.

Anonymous Female Speaker 4:39
But everybody starts University later. And it's all because you do either national service or army before you start. So I started at age 21. And I was one of the younger ones.

Scott Benner 4:49
How long is that army then? Is it one year? No. So

Anonymous Female Speaker 4:52
for boys, it's three years and for girls, it's two years. I did national service for two years instead of doing army. I

Scott Benner 4:59
see national service

Anonymous Female Speaker 5:00
means it's like kind of being like a volunteer in different. Okay, organization

Scott Benner 5:07
go somewhere build a house, they go, Well, something like that. Well, it's more like

Anonymous Female Speaker 5:11
working in schools or working like I worked in the Epilepsy Foundation here for one year and I worked in school, the second year Gotcha. To be like at risk kids,

Scott Benner 5:20
what drew you to oncology what made you want to do that? So

Anonymous Female Speaker 5:24
I really believe in patients making their own decisions about treatments and end of life. And I feel like I'm college kind of incorporates that. I also think that in oncology, there is like you have a long term relationship with your patients that you don't have with a lot of other fields.

Scott Benner 5:40
I see which one of these kids got type one diabetes.

Anonymous Female Speaker 5:44
Number two, how old number two on the lottery. She's nine now she was diagnosed when she was seven. Oh,

Scott Benner 5:52
wow. So a half a year into your practicing. She got type one.

Anonymous Female Speaker 5:59
So she actually got it's been more than two years. So she's actually got type one at the end and end of my residency, I say, but I'd already finished like my board certification. So it's a little easier.

Scott Benner 6:11
Is there other autoimmune or type one in your family? So

Anonymous Female Speaker 6:14
until then, we didn't have like, I would have told you that we're all completely healthy. But she was diagnosed with celiac, but at the same time, it was the same blood test. And afterwards, we were diagnosed me, my husband and another kid with celiac. And I have Hashimoto and my husband had psoriasis, which isn't exactly autoimmune miss out on Flim Flam. Ettore. My youngest might have been illegal. So

Scott Benner 6:41
we're running autoimmune struggle. You didn't know you had Hashimotos.

Anonymous Female Speaker 6:45
Know that. I knew, but I never considered it if you'd have asked me. Am I healthy? I always said yes. Like, and I gave birth and they said, No. Do you have anything, any medications you take? And I was like, Oh, no. And I'm like, Oh, wait, I do have something because it's just something that's so common. How

Scott Benner 6:57
old when you were diagnosed with that? 24? Okay, so how old are you now?

Anonymous Female Speaker 7:04
37?

Scott Benner 7:05
Might you laugh?

Anonymous Female Speaker 7:06
Because I can never remember.

Scott Benner 7:07
Like, okay, so you've had it Hashimotos for a while. And even though it's auto immune, if I would have asked you the day your daughter was diagnosed, are there any other autoimmune issues in your family? You might have skipped right over Hashimotos? No,

Anonymous Female Speaker 7:22
I asked me like that I would have skipped over. But it's not like I thought about it.

Scott Benner 7:29
Okay, so it was a surprise. Obviously, when you look at your family line, your husband's in yours. Do you see any other autoimmune? No, no, just the two of you getting together might have been the soup that made

Anonymous Female Speaker 7:43
like we didn't even know we both had celiac before. It would have been a cute dating story. But it didn't happen like that.

Scott Benner 7:47
So can I ask I'm so sorry. This is a weird, like path to go down. But you just ladder running to the bathroom? You didn't know why or was it not affecting No,

Anonymous Female Speaker 7:57
once you have one kid who has celiac or person in the family? So you do screening for all the like, first degree relatives? So we all did screening? And my husband is symptomatic. And I think it's just people didn't look for it as much when we were younger. Yeah. So he just like lived with it, because that's the way his body worked.

Scott Benner 8:16
I take I mean, listen, I think that's a valid answer. I think that's it, people don't understand I'm older than you fairly significantly. And I'll

Anonymous Female Speaker 8:23
tell people like You're like one half generation, I guess above are wondering, I

Scott Benner 8:27
mean, I'm 52. I don't know what that means. But like, all I know is that no one ever considered my health. Like I was either sick, like with a cold or something broke, but nobody talked about nutrition or how your body worked, or what was normal, or what level like that was just not a thing anybody spoke about, you would have been like a majorly hippie if you talked about that in my family in the 70s. You know what I mean? Okay, so you've had this job now for a couple of years, you're obviously on a cold wind episode. So we usually skip ahead a little bit here. Instead of telling fun stories and stuff like that, what makes you reach out and say, I think I have something to add to this cold wind series. Contour next one.com/juice box, that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen and you're going to get more information. It's easy to use and highly accurate. smartlight provides a simple understanding of your blood glucose levels. And of course was second chance sampling technology you can save money with fewer wasted test strips, as if all that wasn't enough. The contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this Download a coupon Oh, receive a free Contour Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use. today's podcast is sponsored by the ever since CGM boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts when higher low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not the ever sent CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM, that can't get knocked off, and won't fall off, you're looking for the ever since CGM ever since cgm.com/juicebox.

Anonymous Female Speaker 11:35
It's really interesting, because you know, every doctor kind of has like their traumatic patient, like the patient that you feel like you could have saved, she would have done something different. And I'm not even talking about like negligence and getting sued. But just like human error, I guess it could be either or. So mine is actually patient who died of decay. Who had type one. And I think that it kind of shows are like understood from that how much we don't understand type one. And that was even before my daughter had type one.

Scott Benner 12:06
You're helping a person with cancer. Yeah,

Anonymous Female Speaker 12:09
so it was like on oncology Ward, right. So we're just in colleges, and she was getting a therapy that she wasn't eating. During the therapy. It was hard for her to eat and she was in pain. So they gave her a lot of morphine. And then she kind of started going downhill. And they decide to center up to be in the ward so we could kind of watch her give her fluids. They took off her fentanyl patches. And they said like if she's kind of seems like she's in pain, like just give her a little bit of morphine. And I was the on call resident we did 26 hour shifts. When they called me the middle the night and they said, You know, I think she's in pain. So like I went to see her, give her a little bit more fit. And she looked really off. So I took my tests, but sadly, the blood gases didn't. They weren't good. So I never got that back. And then they call me like two hours later that she died there is that she's not breathing. And we went to resuscitated her. And we didn't really know what happened when they checked her blood from the ICU. So she had a lot of ketones and they couldn't figure out why. And then they finally figured out that she was type one. And what happened was is that she wasn't eating. And she her blood sugar's were running low. So she took off her pump, and she wasn't getting an insulin. And that means that her blood sugar's weren't high, because that's something that we would notice in the hospital. She didn't say that she was that insulin was a medication that she had to get. And she took it off before. So it was like normoglycemic DK, which was something that I didn't know existed before that. So she died a few a few days later. And ICU. This

Scott Benner 13:47
feeling you have, there's something you could have done? Was it as strong then as it is after your daughter's diagnosis.

Anonymous Female Speaker 13:56
Now it was really strong. Then I did a whole kind of mortality and morbidity meeting with the doctors bass, I kind of researched it. And they understood that type one wasn't something that was just like, okay, you know, they have they have type two diabetes, or they have high cholesterol or they have high blood pressure, that it's something that you really need to notice.

Scott Benner 14:16
How was she in the system without physicians knowing she had type one. So

Anonymous Female Speaker 14:21
she was brought up like this, she was getting treatment. She wasn't an inpatient, and then she was sent straight to the ward, just like that we could kind of help her out. Yeah, again, they assume that she had an overdose of morphine

Scott Benner 14:36
or fentanyl or whatever. Okay.

Anonymous Female Speaker 14:38
And she, so nobody really did a full intake. But I will say that even if she would have said to me, yeah, I have diabetes, I would have been like, okay, so you have diabetes. You know, like you ask, what medications you take, and like, I wouldn't have thought to say, Hey, if you have type one diabetes, how come you don't have insulin on your medications?

Scott Benner 14:58
You think if you knew she had had type one. And you might have checked her blood sugar but then seen it be at a certain number and then

Anonymous Female Speaker 15:06
they knew she had diabetes. It checked her blood sugar was normal. Okay.

Scott Benner 15:09
Is this the first time you're seeing her when when you interact that night? Yeah, yeah. Okay. Yeah, that's crazy. And no one, it just doesn't click for anybody that you can have

Anonymous Female Speaker 15:20
click for anybody. It's like it's a went through, like, usually you have a lot of people looking at something and then somebody's going to figure something out before something bad happens. Yeah, so I was just like the last one when the really bad thing happened. But nobody realized that. And if I put it in other perspective, and I'm not taking the responsibility off of me, or like, the doctors in general, I feel like when you're tightline, it's really important. Like you have to know about your disease. And you have to know that insulin is a medication that you take, and that you cannot take off your pump for a day or two, you know, you have to know that you always have to have Basal insulin,

Scott Benner 15:56
right, retrospectively, do you know how long she had type one for

Anonymous Female Speaker 16:02
years and years and years? And I think that that's also people who are older, like I find in the hospital, that people who are like in their 70s or 60s and they have a pump? I feel like they don't know quite as much about diabetes, people who are maybe diagnosed today. Yeah,

Scott Benner 16:18
I think that's true. I also can see where if loaded on morphine. She was thinking, my blood sugar is low. I can't get too low. I'll take this pump off for a little while. Then

Anonymous Female Speaker 16:31
she wasn't actually loaded on morphine. And it was just decay. Oh, it was she was? Oh, I don't think I don't think that the morphine issue was at all an issue. She was going downhill because she was starting to be in decay, I think was misdiagnosed.

Scott Benner 16:44
I see. I see. I see. Wow, geez. Yeah, listen, for people listening. Please don't take your palms off. Please, please, please. But isn't it crazy that even a person who has been living with it forever doesn't know, I need this insulin? I have to have it. I can't be without a background of insulin. Yeah,

Anonymous Female Speaker 17:03
and doesn't even look at it as a medication that they have to put on. Like that they have to tell you about. Yeah, it's just like something that they have in the background. And it's funny, because one funny half, I did that. A few years later, I had a patient who had type one. And I went to visit him in the hospital. And also he had been getting chemotherapy and infusion center and his blood tests were off. And so he also he went off to the war to be an inpatient. And I went to visit and just to see how he was doing because he wasn't doing very well. And I knew he had type one. And this is after my daughter was diagnosed, I was super vigilant. And I said, he said to me, Oh, by the way, I don't have infusion sets here. When am I going to go home? Cuz I haven't had my pump on since yesterday. Wait. And I said what? And he said, Yeah, I you know, I came out and it was an infusion center. And then I didn't know that I was going to be admitted. So I you know, when what am I going to be able to go home because I don't pump on that

Scott Benner 18:01
lack of urgency. It fries my mind a little bit. Like I have just beaten into my daughter's head that if that pump runs out of insulin, and you didn't expect it to if it falls off, everything in life doesn't matter anymore, you stop what you're doing head directly to insulin and get another pump on. Right? Right. It's one of the non negotiables of our of our, our existence and to hear somebody say Oh, my thing got knocked off a day and a half ago. And

Anonymous Female Speaker 18:34
again, the reason that he thought that is because his blood sugar's were normal, because he also he was in liver failure. And he wasn't really eating, and his struggles were normal. So he didn't need to get insulin from the nurse. In other words, whenever they came to check his sugar, it was normal. And he didn't feel like he needed to get insulin as a correction.

Scott Benner 18:52
DK is not attached to a number and it can happen very, very quickly. Yeah, yeah. Yeah. And so is it fair to say that? Do you meet more people with diabetes? Who understand it? Or who don't understand it? Or is it very age, or generational? First

Anonymous Female Speaker 19:07
of all, in general, and cancer, like most patients are older, and type one is relatively rare disease so thoroughly, I meet so many type ones. So it's hard for me to say, but I mean, most of the people I meet are 50 and

Scott Benner 19:19
getting away from type one for a minute What are like what are your bone chilling stories that have more to do with I can't believe a physician didn't understand this, then it does diabetes.

Anonymous Female Speaker 19:32
I think I have other things that like stand out to me that like I'll never forget. And again, the reason I don't forget these is because for me the decay patient was like my trauma. Yeah. And afterwards, it's just a habit type one so I'm super vigilant about type one. Yeah.

Scott Benner 19:52
In your intake you the things you want to talk about. I'm very interested because of the perspective you set this up at like B Basically a doctor's perspective before and after having a personal experience with the disease. And but your first thing on your on your list is Doctor bashing. So what did you want to say about that? Well,

Anonymous Female Speaker 20:12
if I did the doctor bashing, by the way, I'll say one more thing about that patient that I had, that I called endocrinologist for the patient who was having normal blood sugars, but didn't have his insulin pump on. And the endocrinologist said, and I said to him, he's type one. And he hadn't had insulin for two days for almost two days. Like, how much basil Should I give him? And he said, What are you talking about his sugars are normal. And the reason I mentioned this is that even Endocrinol she was an endocrinologist in endocrinologist and training others as a sub specialty. And after he talked to his boss, he did get back to me with the number of units. But even endocrinologist don't see type one very often adult endocrinologists. It's more

Scott Benner 20:55
about type two for them. Yeah, yeah, it's diabetes.

Anonymous Female Speaker 21:00
Yeah. And it's hard. Like, even for that, like, it's hard to see. Like, when there's a situation that's super serious, like I was saying to him, like, they're the situation yet. It's super serious. And I need to know, you know, what I should do? And if it would have been anyone else, they would have been said, okay,

Scott Benner 21:15
yeah. But he sees that number and just goes, I don't need insulin. Yeah,

Anonymous Female Speaker 21:19
yeah. And again, I mean, I hope that throughout his training hall, get trained better. And he probably learned from that patient. But most doctors wouldn't have known to even make the call to the endocrinologist. And yeah, many endocrinologist when they definitely want to have, you know, set him know, talk to your attending physician.

Scott Benner 21:39
Doesn't that frees you though? Like when I when you see, it's funny, like when you said that? I'm almost stunned, like to the point where I can't think for a second, trying to imagine all these people out in the world who are counting on all of these physicians. And a basic idea like that. I don't care if they were new or not a basic idea, like that's not understood, like what chance do we all have? You know, so

Anonymous Female Speaker 22:06
I brought that up before the doctor bashing just because I want to say that I do appreciate that doctors definitely need more education, but I feel like the education they need. First of all, it depends on what your specialty is. In other words, there's a difference between family doctors or pediatrician and an endocrinologist, as opposed to an oncologist or surgeon or orthopedic surgeon, you know, people need to know different things. And I feel like most doctors, they don't need to know the ins and outs of diabetes, they need to know when they need to ask. And others. That's how medicine works. Because the specialties, like once I'm an oncologist, I really don't know general medicine anymore. And even within oncology, I'm a GI oncologist. And I can understand about breast cancer. But even now, and it's been three years since my boards, I can't I don't feel like I can treat it well anymore. Because I don't know the new data that's coming out.

Scott Benner 23:00
Let me say this before we go any further, because I've been doing this series for a bit now. And I live in two different hemispheres of my thinking on this by first is on the ground level at a human level, you're the one saying you know, you need to know. And then I pull back. And I look at all the stories that have been told to me. And I've tried to incorporate everybody's perspectives. And I think that doctors are in an unwinnable situation, because there's so much to know. And they're just people. So they have to be able to hear all the things you're saying, connect the dots correctly, then reach into their, you know, computer bank of understanding, pull out the right answers, apply them correctly, somehow communicate them well to you, you have to do them correctly, it's pretty much impossible, right? You're asking a person to do the job of a computer, which by the way, is going to lead me to say over and over again, probably over the next couple of years on the podcast. I think that the nature of being a physician is going to be changed significantly by AI. I

Anonymous Female Speaker 24:05
disagree. Go ahead. I disagree on that. It's not that I don't think that AI is going to be incorporated into doctors worlds. And like I think in general, everybody's going to learn kind of how to use it in a way that actually benefits people in society. I think that with doctors when you meet it, first of all, a lot of being a doctor is being able to relate information. And also to get the information out to the patient. In other words, the patient. Yeah, they can put some stuff into computer, but they forgot to tell you a lot of really important things, for instance, not telling you that they need insulin, or not telling you that like they came for something and you kind of asked him questions. And then like 15 minutes later, they mentioned something that's super serious, but they didn't even think to tell you that before and it's not something that you would have thought to ask. Yeah, so I think that we're very far from like computers being go through that.

Scott Benner 25:00
Well, that's incredibly common. Obviously, it's people just not telling the whole story. I've just recently had, I did this thing the other night for myself, right, I took this long standing issue, I've had my life. And I opened up a chat GPT four o window where I was actually speaking to the computer, and it was speaking back to me. And I said to him, Hey, I'd like to have a long form conversation about a health issue I've been having for 20 years. And I don't know that I'm gonna get all the information out. So let's have a back and forth. And then I did that I actually just talked to the it was my phone actually talked to my phone for 20 minutes. First of all, it was one of the more cogent conversations I've had in the last six months, which was upsetting to some degree. And I started thinking like, maybe I should start talking to my phone about what what I thought about the movie I just saw, because maybe it'll be better than some of the friends I have. It went back and forth. It asked questions. I, as I went along, would go, Oh, you know what, I forgot to mention this. And then I added that. And what I realized was that the the AI, it hears everything I say, it's not biased, and it doesn't forget. So even if I mentioned something, and then I make a left, turn in the conversation, and never get back to it, it doesn't forget that I said that, right. I'm almost trying to say that AI has. I feel bad for doctors now. Because now I'm recognizing more and more. We're asking them to know everything, and then be able to recall it. And that's not fair. And I don't see how anybody could do that.

Anonymous Female Speaker 26:31
Does that make sense? Right? Which is why like, it's, you know, you've mentioned before in the podcast, but if it sounds like a horse, right? That's what it is? Yeah. Because in the end, like you have to go with what's common first. And it's not that you're forgetting that there can be other things is that your first checking or trying to treat what's common? And then if that doesn't work, then you have to go back and kind of ask more questions and reread the notes and think again,

Scott Benner 26:57
what is that? A I had a conversation with your husband? 20 years ago, don't you think it would have come up and said, hey, you know, you might have celiac,

Anonymous Female Speaker 27:04
I think it wouldn't have been hard for anybody.

Scott Benner 27:08
They're like, listen, we didn't want to stop eating bread, leave us alone. But you don't I mean, like, I wonder if and I take your point, like, I'm sitting here trying to be very thoughtful about it. And I'm having this very Intel conversation with the AI. Most people are going to go, my head hurts. And then where do you go from there with that, right? Like they might read my doctor,

Anonymous Female Speaker 27:28
you have the basic questions that you're supposed to ask to try to figure out. What kind of headache is it? First of all, there's something dangerous, you know, or not, and something that's emergent. And then from there, you keep going to try to figure out what it is based on differential diagnosis that you have in your head.

Scott Benner 27:42
But I can't teach the AI to differential diagnosis, know that you can definitely listen, I know it's your job, and you still have like, 25 more years, you got to make money. I'm going to plant my flag in this one for the future. So I can come back to it. If I'm wrong. That's, that's fair. I think that doctors jobs are going to shift to be the human eyes, on the algorithms, understanding of what's going on.

Anonymous Female Speaker 28:07
I will say the beauty of oncology is that it's as opposed to other like to internal medicine, or I'm not trying to diagnose and I'm trying to figure things out so much. I'm trying to figure out what the patient how they want to be treated, and how to treat side effects that they have and how to treat things that have to do with the cancer. Yeah, so I think that my job is pretty safe.

Scott Benner 28:27
Because at no point are we going to put a person in front of a computer screen and say here make her feel better. So like, you know, like,

Anonymous Female Speaker 28:34
this is your prognosis, what would you like to do now?

Scott Benner 28:37
Also, I think Modern medicine is insanely good at some things, right? Like the mechanical stuff, like surgery and emergency care. I think it's it's Nexen. It's second to none. It's amazing. You know what I mean? But it's when you get into that diagnostic stuff that's beyond normal. Or when it gets into, I mean, something like type one diabetes care, which is so much more, what would you call it? Like, it's my it's more art than science? Maybe?

Anonymous Female Speaker 29:05
You know what I mean? And I think also that type one is really different than other diseases. And it's one of the only ones I think are the only one that I know of that it's really like you at home have to make decisions all the time and to change your dose. And what how much you're giving now how much you're giving afterwards. You can't wait the three months to see the endocrinologist to figure out your trends. It's like you have to change it by yourself. Yeah. And I think in most other like I can't think of anything else that's like that, that it's not the doctor actually designed to give you a medication and telling you when to take it and how much to take it. So type one is really different even in other chronic illnesses or illnesses in general. Why

Scott Benner 29:51
I wonder then, why do we try we doctors? Why do we try to give static advice for something that's so clearly Ever changing. So I

Anonymous Female Speaker 30:01
don't, I think there's two answers to that one, I don't feel like I got static advice, good. When she was diagnosed, it was kind of clear, like even the person who did the pump training for us. So she also had type one. And she said, you'll see like, you'll start changing things in your pumps on your company, see, the things are kind of going wonky for your Basal if you're, you know, you'll make changes. And the doctor was also really clear to him in the beginning, I called him every single day, he said, Call me every morning, tell me what her number was when she woke up, and we'll decide on the Basal dose and, and at that, you know, every night call me and tell me what her what her numbers were throughout the day. So in that sense, he was definitely saying that's ever changing. And he was also taking responsibility for him. And I don't know how he does that with every patient. Yeah. And I think different patients at different points feel more comfortable saying, Can I change about myself or I'm going to for

Scott Benner 30:54
you, when the phone calls went away, when it was no longer comfortable to call somebody every morning? Like, where did you get the confidence to keep doing that as things changed.

Anonymous Female Speaker 31:03
So I think it helps to be a doctor, first of all, okay. In other words, like, I never started with, like, not having confidence, I didn't know, I didn't know about type one, I knew that there was basil on it, there was Bolus, like I knew the basics. But I think that, I mean, it's not as scary to use medications to make changes when it's something that you do for other people every day. And I also think it's like, they gave us the basics. And then when I thought we went on a pump, about a month and a half after we were after she was diagnosed, she was on the Omnipod dash. So I just like I knew what he was going to say. I mean, I knew that I was going to say, Oh, she's going up higher, about nine o'clock. So we'll say oh, so change the basil at seven. So eventually, I said, you still want to keep me keep calling you.

Scott Benner 31:53
I think the point is, is maybe at the core of everything, I'll say all the time that the people who find the courage and the knowledge to make adjustments to their insulin, without a doctor are the ones who end up succeeding the best, you know, like it just that autonomy and confidence. I mean, obviously, it's a need. But if you it's almost like telling somebody, like you can make your thermostat 68 degrees. But if you want to change it, you're gonna have to wait 90 days, and then drive to where I am. And then talk to me about why you want to change your thermostat. And for you know, what happens if it gets warm or cold during that time and you want to move the thermostat back and forth, you look at it, you go I know, this thing could make me warmer or colder, but I'm not allowed to touch it without going and talking to the person that I really think that?

Anonymous Female Speaker 32:40
Yeah, I mean, I only have, you know, my experience with endocrinologist that we're with. And that's definitely not the way you know, like, he never had an expectation that we wouldn't change things. And I think the opposite. He has an expectation that if you have the capabilities to do it that you will don't and he only doesn't do that, or people don't change it. Some people just don't have the capability, let's say to do it or to do it in a safe way or to understand it as well. Maybe, right. Sure.

Scott Benner 33:08
Well, don't you think you you got the autonomy? Because you were a doctor? No, no, you think that you think this doctor tells everybody the same thing? Yeah, okay. Yeah. Well, you got a good doctor, then. So then that's the next part of this whole Doctor thing. Right.

Anonymous Female Speaker 33:21
So it's really complicated, though, to say that because I didn't, it's not that I get a lot of information. And I think maybe this goes back to the doctor bashing is that I think that you have to have realistic expectations, like also, with what you expect the doctors to know what you expect them to explain to you when you're first diagnosed and a little bit afterwards. And that doctors have reasons sometimes. And it's not that they don't know necessarily about why they're not saying things, for sure. And in the beginning, you know, you can't have all that information in the beginning. And we left the hospital without a Dexcom. And I have to say that I don't think it's a good thing to leave the hospital for Dexcom, which I know is a minority opinion. Because I think it did two things. One is that it made me not nervous to not have my Dexcom working because we didn't do it for two months without a Dexcom my daughter felt her lows in school. We don't have a school nurse. She was seven and she could still do it and she could fingerprick herself in class if she didn't feel good. And also I think that it was kind of good to just like get the basics down card counting my daughter after she was diagnosed. She would eat five to six bowls of cereal in the morning. Yeah, because she's starting now one bowl of cereal spikes really high hours afterwards. So I can only imagine what those five to six bowls were doing. And to me I checked her you know, before her snack at school, and then we will just correct and move on. Otherwise we would give the correction get the carbs. And that was it. Yeah. And I think that if I would have seen all that data, and I can only imagine that she was sitting Get the three hundreds for those two and a half hours until she went down to 200. And something when I gave a correction, I think it's okay to wait those few months. And to just get the basics down.

Scott Benner 35:11
I'll play devil's advocate because it's fun. I think you have the luxury of feeling that way because nothing bad happened.

Anonymous Female Speaker 35:17
I don't think that something bad happens from having high blood sugars for a few hours. Definitely not for a few months.

Scott Benner 35:25
I don't mean high blood sugars. I mean, like, in the first six months of my daughter's diagnosis, she had a seizure. If she was I just

Anonymous Female Speaker 35:33
I want to say something about that. Yeah, totally different. Totally different if you have a toddler. I'm talking to older kids. Okay. Like, I think that having a toddler is completely different. You can't communicate with them, for them. Definitely impossible at the Dexcom 100%.

Scott Benner 35:48
But let me ask you, let's just again, what if on one of those mornings with all that cereal, your daughter had a honeymoon moment and you had pumped in enough insulin to cover seven bowls of cereal and then she went to school and passed out. Do you think you'd be saying it's okay, not to have a CGM? Because it's good. You get to learn. But

Anonymous Female Speaker 36:07
what I think is that she checked herself and she knew how to treat her lows and it gave confidence.

Scott Benner 36:13
Oh, I agree. Listen, everything you said there's value to like, I 100% agree. Like,

Anonymous Female Speaker 36:18
I don't think that would happen. In other words, it's she went she started honeymooning, right. Like she had anyone for about a month. And in that month, we didn't have a Dexcom. And it drove me crazy. Because we were at the park and suddenly she wasn't feeling good. And she was 40. Like we had bad loads or, you know, she went to sleep and she wasn't feeling well. So I checked her sugar when she went into bed. And she was 30. It's not that we didn't have loads. I didn't. We didn't have it kind of showed me that. Yes, she would feel her low. And yes, we can deal with it. Despite the fact that I don't know how fast she's falling. Yeah, so we gave us carbs. And we checked her again, after 10 minutes. And then we gave more carbs if we needed to know as seizures are few and far between.

Scott Benner 36:59
In general, you think so

Anonymous Female Speaker 37:01
it's not that nothing bad can happen. But I think that in this in the month, usually after you're diagnosed or definitely in the first few weeks, you're usually your blood sugar was so high that until you start hunting money, you're usually not going to have crazy lows. Okay, so I think it's okay to have at least those two weeks of you know, going home, figuring out what you're doing, and not seeing all the data. And again, it's not that I think that it's good to not have the alarms is that I think that seeing so much data, maybe isn't the best thing when you come out of the hospital.

Scott Benner 37:33
It's and listen, I'm not arguing with you. I will say that. I mean, call me back in 20 years, maybe is the way I'm gonna say this, but like, I, my, my daughter has had one. She had one seizure when she was six months old. We just didn't know what we were doing. We had a high carb meal, we thought we did the right thing. She took a nap and had a seizure in her sleep. It happened again a couple of years later on activity. So we were at an amusement park all day out in the heat. At the end of the day, she saw a vendor holding like, like popsicles. She asked for one, we Bolus for it. She had a seizure two hours later. I know now, by the way that I you know at the end of all that. All that it was super, like I didn't need to give her any insulin for it. Right. I know that now. She didn't have another one again until the night of her senior prom. On a day when she heard very little food and had very little insulin was wearing life saving equipment and all that other stuff. What I'm going to tell you is I 1,000,000% believe and agree with your message. I really do. And I think that the only reason you're able to deliver it is because you didn't have one of those random things happen to you because I don't think you were a CGM. For most of the time you were it for the moment that you can't plan for that you don't see coming. That's my feeling. And you just haven't had one of those moments yet when I hope you never do. Like but

Anonymous Female Speaker 39:09
now we're on the CGM. But again, I think that when you're when you're diagnosed and your sugar's are super high, it takes time for them to come down. So I think that you do have a leeway of at least two weeks where it's okay. You don't have to be stressed about getting a CGM because I see people writing you know, like, don't leave the hospital without one. It's okay to leave the hospital without one. You know you you have to

Scott Benner 39:32
Yeah, no, I take your point like it doesn't like I do see your sad one

Anonymous Female Speaker 39:36
after two months. Yeah, we and we didn't have and I would have wanted to have one even before when just when she was honeymooning and I knew that she was having lows. We were no

Scott Benner 39:45
I think it's a good conversation to hash them. I also don't think there's a right answer and I think that the right answer is for whatever ends up working for you. What I'm saying is it also has to do a lot with your personality like for some people were like look, all that data would be overwhelming. There are other people would be like I'd find all the data comforting, like so your personality, the situation you're in, etc. But I hear what you're saying, If you can't get one right away, like, please don't act like it's the end of the world, you can test you can be careful, you can put safeguards in. And there's a lot to learn along the way. You know, I'm agreeing with you, and at the same time trying to have a conversation, right? Yeah. Yeah, yeah. Okay.

Anonymous Female Speaker 40:21
All right. And by the way, like in terms of Outlook, like if my daughter had a seizure, right, what I freak out or not, then and also afterwards, also, in that sense, like being a doctor, I think, and it's possible, it's my personality, without being a doctor, but like, the way that I look at illness and death, and I'm not saying deaths from diabetes, but in general, fatal illnesses and chronic illnesses. I think it's different than like, you were talking before, about, like how modern medicine is amazing in a lot of ways. And I think that it kind of got us used to thinking that everything is fixable. And that, like illness and death is something that's traumatic and not natural. I think that I have a different perspective on that also. So it's also like, if we need to use glucagon, I hope we don't need to, but I'm not sure exactly what my reaction would be. And if it would be freaking out afterwards for the next 10 years.

Scott Benner 41:15
Yeah, I don't know. I also don't think it happens to some people at all. Like, I mean, it didn't happen to Arden. Like she had that seizure a couple of years ago. And, you know, she was shocked for a couple of days, maybe three days, actually, like, she was like, 17 years old, like she slept on our bed for a couple of nights afterwards. And then one day, she just got up, and she's like, I'm gonna go in my room. And I was like, okay, and then we talked and we talked a day or so later, we talked about on the episode where she just said, like, I've thought it through, I didn't do anything wrong. And that seemed to comfort her. For so many days and weeks and months and years, I do the same things over and over again. And I was okay. Yes, there was a variable in here that like, she's like, but it's uncommon, and I don't think it's gonna happen again. So I'm gonna go back to my life. Whereas somebody who's maybe bent towards depression or anxiety that could end up making them scared for a decade, like, and I've seen it happen, you know what I mean? So, it's interesting to talk about blanket statements overtop of such a moving target over top of so many different personalities and experiences and, and that's why there's no like one size fits all accommodation, for sure. Yeah, that's just my perspective. No, I love it. Are you kidding me is fantastic. I need to listen without these conversations. I don't know if you know this. The podcast is boring. And then nobody listens. And then Scott's got to get a real job. And I don't want to do that. So imagine if I worked at a store or something like that, where you came into? I would chat chat. Talking to the customer. Yeah, great. Oh my god, I'd be the most popular cashier. I'd be like, I'd be like, hey, what do you know about this? And then we start talking about something crazy. I heard on a podcast probably. But anyway, so Okay, so on your list now what's the nondiabetic? You? Here's your list, I'll give it to everybody. Dr. bashing, nondiabetic number. Parenting versus body autonomy. I love this one. I want to make sure we get to that. Why don't we do that one next? What do you mean by that? And you say parenting versus body autonomy? Because I have a lot of that. Can I say one more thing about the doctor bashing? You want to do some? He's heard but doctor you want to know, Dr. Bash, but

Anonymous Female Speaker 43:23
I didn't say the other. Is that, like, I tried listening to the Grand Rounds, and I couldn't I stopped in the middle of the of the first real one. Okay. And, and I think that, I think, again, that you really have to take in perspective, like what you expect of a doctor and what you expect of yourself. And I really feel like we talked about a little bit in the beginning, but that like, it's, it's your illness, and it's like, I'm freaked out that my daughter is gonna go to the hospital when I'm old and can't go with her. And nobody's going to know, you know, how to advocate for her. Yeah. But in a normal world, or person, that you're not by yourself. And either you can advocate for yourself or have family member advocate for you. Like, I feel like that's really like where the education needs to be. And education for doctors again, like has to be a kind of mentioned before, like, it's, it's how to not miss something that's important. And that's true about every illness, and not only type one diabetes. And it's knowing that you have to call the endocrinologist if you're going into surgery with somebody who came in with type one diabetes, and they're not conscious, and they can't talk to you and say things are, you know, how you're supposed to do their sugars when they're in the ward and they're getting, I don't know, TPN or they're getting glucose in there, you know?

Scott Benner 44:42
So, I think you being a physician and the nature of your personality, it gives you a certain perspective, obviously, but let me let me ask a couple of questions and see if you see a thru line here. Once a week, three men in a truck come down my street and take my garbage away. If they took To the cans and not the third can do I have to go outside and advocate for them to take all the garbage? I

Anonymous Female Speaker 45:05
think first of all that you could say, maybe they didn't take it because one of them had to go to the hospital suddenly. Yeah. But

Scott Benner 45:11
but you know what I'm saying? Like, it's the I didn't see this once.

Anonymous Female Speaker 45:14
I'm not saying that I that the doctors don't have responsibility. I think that the expectation that they'll have so much responsibility or so much knowledge, that that's not realistic. I agree with you. Yeah. And that, therefore, mostly, you have to have it and they have to know, hey, this is something that we have to check out. And it's also knowing a doctor has to be able to ask the patient. Oh, you have type one. You know, how do you get your insulin? Oh, they have a pump and CGM. Okay, during your hospital stay? Do you want to take care of it? Or do you want us to take care of it. And that has to be a conversation that can be had with the doctors. And it doesn't have to do with them understanding it has to do with them understanding what type one the type of disease it is, right? And that a patient who's awake and take care of their diabetes better than they can. And also in the hospital, generally patients, like when kids are sick, or people I just know about kids, I have a kid and I'm not the one that's type one. But it's really hard to manage blood sugars. And it's really hard to manage blood sugars for somebody else. Yeah. And I think that you also have to have grace in the hospital that in the end they are when you're in the hospital, they're trying not to kill you, if you came in for diabetes, they really know how to take care, right? They know how to take care of DKA really well. But if you went in for something that's not connected to diabetes, they're taking care of that thing that they have to take care of. And they're making sure that your diabetes is decent and decent is decent in hospital hospital, not decent in the life.

Scott Benner 46:38
But how are somebody supposed to know that like, so? If I'm just a family or an adult, and I've been alive for 20 or 30 years, and so far, health care has been one time I got the flu and I went to the guy and he gave me Tamiflu, or I fell in my arm broke and I went to the guy and he fixed my arm. How is all the sudden? How am I supposed to know all the sudden that the All Knowing all seeing magic Doctor Who makes more money than me drives better car than me, went to more school than I did says they know all about medicine. How am I supposed to know they don't know where that they don't have good news

Anonymous Female Speaker 47:10
is in Israel, we make very little money. Public health care system. Everybody thinks that they know the best thing for everybody in this country. And they will tell you that and nobody's GCR speaks with respect. So we don't have that problem.

Scott Benner 47:25
I know a lot of Jewish people, and if I can make everybody Jewish, then I would assume that they can advocate for themselves. But

Anonymous Female Speaker 47:32
what about the people? What about the people who were also very nice.

Scott Benner 47:37
I didn't mean it that way. I just I but but but you know what I'm saying? I'll

Anonymous Female Speaker 47:41
tell you how. Because because when you're in the hospital that flick a blip in your month or your year. And then you go you have a primary care doctor care doctor, and you have an endocrinologist, and they're seeing your agencies and they're seeing the endocrinologist is looking at your trends. But even the family doctor sees your agency went up from I don't know 6.3 to seven. Yeah, they're supposed to notice that they're supposed to say to you, hey, what's going on? Maybe you need to go back to the endocrinologist. Maybe we can talk about and figure out what's going on. But that's not for the hospital that's for your you're not supposed to leave the hospital or at the hospital isn't your primary care and diabetes is really something that has to be handled in primary care.

Scott Benner 48:17
Yeah. But how are people supposed to know that? Because their

Anonymous Female Speaker 48:21
doctor sees it. I see people say once see, it's like, I don't have an oncologist. I'm not taking care of it. I see that somebody has an ailment, see, let's say they're coming, somebody had colon cancer, they're coming to me, and they're healthy. Now they don't have cancer. And they're just coming for a checkup. And they did blood tests for me, right? I care about specific things. And I don't care about the diabetes. So when I see that they have an A one C of seven, I write to their family care doctor, that they need to go see it to diabetes clinic. And I asked them is who's you know, who's taking care of your sugar is taking care of your diabetes?

Scott Benner 48:53
I'm not being clear. I don't think if I go to a hospital, how am I supposed to know that's not where I get this care? Doesn't that seem like the place where you get that care? If you were a person on the outside was not connected to the medical industry at all. You're not a doctor, you're not. You don't go to

Anonymous Female Speaker 49:08
the hospital and you just have a flu, you go to the hospital because you have something serious. So I don't think anybody thinks of a hospital as a place that that's like where you get regular care.

Scott Benner 49:17
I swear to you I think you're wrong. Though I think that people think I don't think they think of the hospital and the doctor's office and an emergency care center. I don't think they think of them as anything different. I think it's I think they believe it's the place they go where people who know better than them are. And when you get there

Anonymous Female Speaker 49:34
better than them about specific issues. Yeah. And again, I find that that's something that that people have to be educated. Yeah.

Scott Benner 49:42
How are we going to do that? How are we going to do that? By

Anonymous Female Speaker 49:47
talking about how about learning about their disease and actually, you know, going on Google and looking, you know, looking for answers asking your doctor questions.

Scott Benner 49:56
I heard an actor on a podcast the other day told me that straight lines aren't a real thing. I heard another I heard a basketball player telling me that the globe is threat flat, you want them to know about this too, like they don't people don't know about anything they don't know, inside of my sphere, the world I've set up for myself, I'm all knowledgeable. If you take me outside of my sphere, I don't know a damn thing about anything. And so what I'm saying is that people have never been sick a day in their life. Just think that when they get to the hospital, everyone they're talking to knows everything that they need to know. And the where that problem comes in, is that obviously those people don't know everything. But if I think they do, then I take what they say as gospel, I also believe there's nothing else because you don't go to the doctor, and he tells you, hey, you have to take one of these pills every day at 8am on an empty stomach, take it Monday through Friday for the rest of your life, you don't imagine that they left something out.

Anonymous Female Speaker 50:51
I think times are changing. First of all, it could be different cultural things. But I think that it's not the same, you know, like they talk about a lot and you know, in medical school, and that people don't come to the doctor anymore like that. Maybe it's people who are older, but not people who are younger. And again, it's not that I don't, I don't think that you need to advocate in the sense of arguing with the doctor on call, or that you need to know what you need them to be aware of. And what things are really important to

Scott Benner 51:21
dig into this for me, what does advocating mean to you? If I have to advocate for myself? What is it I have to do?

Anonymous Female Speaker 51:29
First of all, to me, it's even at the start, the doctor comes and asks how you are so you know, you have to put your type one diabetes, in the front of that conversation, right? When you're sitting in the ER, it's only if you if the doctor is not doing those basic things, right. That's when you have to advocate in a way that's maybe or arguing or standing up for yourself. So in general that in life, you have to stand up for yourself, that's just the way it is, you know, an ER has a million people in it. And in the end, and it's sad, but you have to make yourself heard.

Scott Benner 52:04
So you just said if the doctor doesn't do what they're supposed to do I have to make them do it. How do I know what they're supposed to do? No,

Anonymous Female Speaker 52:11
you don't have to know what they have to do what they're supposed to do in terms of your stomach ache, you need to know your type one diabetes, you need to know your chronic illnesses that if something goes wrong, you can die it. That's, that's you need to know what that means. And then type one, you know what that means, right? You know, you have to be getting insulin, you know that you have to be checking your blood sugar, right?

Scott Benner 52:30
Is there a world where I should expect a doctor doesn't know that.

Anonymous Female Speaker 52:35
Again, I think that in type one, as opposed to type two, that they won't necessarily notice in the same way, if a type two is in the ER, right? For 24 hours, it's not the biggest deal in the world, if they didn't quite get the insulin dose that they were supposed to be getting, right 24 hours, it's not, it's not gonna be the end of the world, I don't think that you can expect that the ER doc is going to notice that your pump is off and that you're not getting your insulin because when you're in the ER you don't, they don't ask you for your like, they don't give you your basic medications, at least not here. That's if you go to the ward. So then you sit down, you know, and you write in all the medications and you have all those orders. But if you're in the ER, you have to tell the doctor if there's something that you need to get that as well. It's not something that just happens.

Scott Benner 53:19
So I should trust the doctor yes or no,

Anonymous Female Speaker 53:22
I think that you should trust doctors. And I think that discussion with the doctor starts from trust.

Scott Benner 53:27
So let me keep going. So I have type two diabetes, I've been told by a doctor already that it's very important for me to take my insulin every day, keep my blood sugar's in a certain place. And then I go to the ER for, I don't know, I can't fart, whatever. And now I'm in the ER and for a whole day, they don't care that my blood sugars are high. And then they're really, there's

Anonymous Female Speaker 53:47
no way that they're gonna let you be riding so high. They'll give you corrections. It happens all the time. You're there for 24 hours. Yeah, you should tell them when it's eight o'clock at night or nine. Whenever you take your long acting, you should say to them, Listen, I actually got my long acting, and then the doctor will put in the orders for that. But you can't expect the doctor to remember that you're tied to and that you're on MDI and that you're supposed to get your land and that you've been in the ER for more than 24 hours. So you have to get some time in that timeframe.

Scott Benner 54:13
Right? No, I agree that the person should say that I agree that the person should recognize that they need to take their insulin on their own. But also, they may be thinking that you're going to take care of it. And also my my bigger point was is that if, if a doctor has told me, Hey, my blood sugar should be between 90 and 120. That's optimal. And then I get to the hospital and my blood sugar's are 180 to 220 and they go It's okay, while you're here, it's fine. How do I not go home then and think, oh, maybe 180 to 220 is okay, maybe the first doctor was wrong.

Anonymous Female Speaker 54:44
I think that I think that there. Obviously there's a lot of space for educating doctors, but I think educating doctors is educating that. In other words like that a doctor should be able to know to say to a patient like when you're in the ER Then as your sugars are higher, you know, when you go home, you'll go back to doing what you usually do or go back to your endocrinologist if it's been working out.

Scott Benner 55:07
I'm just saying that how how do we not expect that that person who's now been through that hospital experience doesn't leave? They're believing that a higher blood

Anonymous Female Speaker 55:16
sugar's Okay, still have a family doctor, they still have somebody who's checking their labs, one every once in a while, and somebody who's been to the ER should definitely their family doctor should know that that happened. So there's always supposed to be somebody who's catching that.

Scott Benner 55:29
Do you really think that happens, though? Do you think people leave the ER and then call their GP?

Anonymous Female Speaker 55:33
I think that's supposed to happen. That's what No, but I think that that's where, like the issue of like, how can you make the healthcare system better? It's not for all doctors to know about type one diabetes, it's to be able to have a situation where, yeah, you go into the hospital, and then you, you know, like, somehow gets sent to your GP or your GP knows, or they tell you, you know, you have to take this back to your GP, you know, you get you got a discharge paper, you know, usually like by us, it says, you know, you know, bring this to your family

Scott Benner 56:04
doctor, you're ignoring the the human aspect of it afterwards, nobody's going to do that. They think they're okay, now they left the ER, the pain is gone. They farted

Anonymous Female Speaker 56:11
there think that the people who think like that are also gonna have a really hard time controlling the type one diabetes, because they're not involved. Well, yeah.

Scott Benner 56:18
Oh, but that's my point. My point is, is that of the like, I don't know what it is now. 1.8 million Americans that have type one diabetes, a very small percentage of them even use an insulin pump where no one is.

Anonymous Female Speaker 56:30
But if you see somebody in the ER, right, who came because of DKA, because somebody like that is probably going to have high sugars when they come right. And they should get an endo consult, and they should get they should get an appointment for them to chronologist.

Scott Benner 56:41
But what if I ended up with the Endo? Who didn't know that the person needed basil? And even though their blood sugar was lower? Well,

Anonymous Female Speaker 56:47
that's I'm saying there is that obviously, like doctors need to, but I think that what you hear here, right, is you're hearing people who have bad experiences, and not as much most of the people who are having a decent or good experience. And that's just the reality of having

Scott Benner 57:04
I think most people are having bad experiences, and few people are having good experiences. And I think the numbers about people's a one sees, like, bear that out. Like, I think that I do a podcast for a very small section of people. And that most people who have type one diabetes are not even hearing this.

Anonymous Female Speaker 57:22
Probably, but I think that that's also why doctors need to be able to give rules that will keep health decent, and not necessarily the best. But even if it's really, really late, so I'm sorry. No, I don't have a problem.

Scott Benner 57:37
I love this conversation, by the way. And I really appreciate you having it with me because a spirited conversation like this is the only way to get the idea into people's heads. Because I'm not certainly saying that there aren't great physicians. And I'm not saying that people don't drop the ball in their own care all the time. That obviously happens. I'm just saying from a human point of view, I don't think you can set up a system that relies on the average person to understand what they're supposed to do for themselves.

Anonymous Female Speaker 58:04
So I think that in America, the system is much more complicated and not good system, right? Because, you know, everybody, you have your insurance and you have the some other nobody's really talking to each other. But I think it works differently in other countries and that there's something to learn. I

Scott Benner 58:21
would imagine there's something to learn from everybody. Yeah. For certain. Okay. Okay. Parenting versus body autonomy. This is another one, I have to

Anonymous Female Speaker 58:27
say I do want to talk about the diabetic goals, though. Save two minutes for that.

Scott Benner 58:31
It doesn't have to be just an hour. Do you? Can you go a little over?

Anonymous Female Speaker 58:35
Yeah, no, I'm fine. I'm fine. Just like that. Did you ask it that? And like, was there anything else you wanted to say? I

Scott Benner 58:40
like that you listen, okay. Okay. So parenting versus body autonomy. What made you say that? So

Anonymous Female Speaker 58:45
I feel like a lot of people, you know, like, they're like, oh, you know, fine. You know, it's been five years, and my kids ready for a pump now. So what are you guys talking about? Or like, you know, we're definitely no, it's, it's her body and or his body and their decision? And I've heard you kind of say it also, I think, but I really don't agree with that. And I think that parenting as a whole is deciding what's best for your child, in many, many aspects, right? We push them to do the things that we think will be good for them. We choose a lot of things for them. And I think that the issue of going on a pump is that your kid can't know what it feels like to be on a pump, and what it can help with if they didn't try it. Now, when you go on a pump, you have to know that whenever you change something, right, going from a pump to an algorithm pump or going you know, back to MDI is always going to take a while of figuring things out. Because different things work differently. And you can't expect to be on a pump for one month and be like, Oh, it does work or doesn't work. So I think that you have to push your kid out there. It's like I didn't ask my daughter she wanted a pump. I said to her, Listen, I didn't even ask her what pumps she wanted. I looked at the pump Um, so I checked what I thought would be best for her. And then I said, Hey, look at this video online, we're gonna get a pump soon. And when you get a pump, you'll be able, I feel like a pump is really important, you know, and diabetes has a lot of disordered eating and eating disorders, right. And I feel like a pump is really, really important for that. It helps you keep your eating just being natural. When you're hungry, you eat when you're not hungry, you don't eat and if you want another bowl of pasta in same meal, you just give yourself a little bit more insulin. Yeah. And especially like now we change to lume. Jeff, so even more, so it's like, we don't have to Pre-Bolus. And that makes it even more natural, except for unless she's high, and we have to bring her down first. So I don't think I think it's not, I think it's the wrong thing to do.

Scott Benner 1:00:46
This is boring. We agree. So this is so boring now, because you and I agree.

Anonymous Female Speaker 1:00:51
We agree that but I feel like I feel like on the Facebook page, but it's a minority opinion. And yeah, maybe to you here, I don't know,

Scott Benner 1:01:00
somehow my body my choice got mixed in with it's their body, if they don't want to wear something they don't have to. That would be nice if they didn't have diabetes, like like, and I would agree with you, you know, but

Anonymous Female Speaker 1:01:11
again, if your kid is on a POM for three months, so you've already you know, you've given it a shot, and they don't like it. So yeah, go back to MDI. Because they they understand, like, my daughter understands that if she doesn't want the palm, then she's going to have to do a lot of injections. Yeah. And that will have to do corrections with an injection. And also, especially for little kids. And definitely during honeymooning when you can only give full units. Sometimes she didn't want to eat a snack that was 30 cars when she was a one to three ratio. And like a pump gives you all all these things besides like actually be able to, you know, change your basil and to do a lot of different things and to have an algorithm, like just having a POM. It makes life a lot more normal. And you can't know what that feels like until you've tried it. Yeah,

Scott Benner 1:01:55
I listen, I agree. I also think if somebody doesn't want to use a pump, they shouldn't. But I don't know that we make a six year old in charge of that decision. I don't know what Listen, my son doesn't have diabetes, but he's 24. And the other day we were talking about software, he's looking for jobs and stuff. And I asked him a question. And he goes through I don't know, in my head. I'm like 14. And I'm like, exactly. I think the way I've said it over and over again in the podcast is I don't know many other big life changing decisions that you let 10 year olds make. Right? Yeah,

Anonymous Female Speaker 1:02:26
I think like it's not only about like a pump. It's also what we wanted to change the type of ends though, when we wanted to start looping. So she was dead set against it. She liked her PDM she knew how to use it. She didn't want to learn how to press other buttons, and she really didn't want to do it. But again, like I didn't ask her like, Hey, do you think we should try this thing? I said, Sir, listen, I found something I think will be better for us. And we're gonna give it a shot. And we're gonna see how it is. And if you tell me later that you don't like it.

Scott Benner 1:02:52
So we'll go back. This is how I do it, too. That's exactly how I do it. I also even now that Arden's older, she's 20. Soon, she'll be 20 in a couple of months. And just recently, she got low at school, and we were texting her and she's like, stop texting me. And I said, answer me, and I won't text you. And she's like, you don't need to do this. And I said, Oh, you don't want me to do this. That's fine. I said, start paying for school yourself. And it'll be fine. I was like, but right now, if you want me to pay for college, when I text you about this, you text me back. That's it small price to pay. Right, Alex? What are we asking for? So you don't have to pay the money. She just has to text me back. Right? And then we had a conversation later where my wife and I explained to her like, look, I understand that it might be it sucks. Like you're sitting down, you're working you're distracted, you know, you already fixed your blood sugar, right? Like it's been taken care of the number just hasn't bounced yet. And now we're bothering you. So the blood sugar, so you got low that sucked. You had to fix the blood sugar that sucked. It took you away from what you were doing that suck. And now all of a sudden, here we come. And it's just it feels unnecessary. Like but you don't know our side of it. I understand your side of it. I understand. It's not perfect. I wish it was I'm sorry. It's like this. But we can't just sit here wondering if you're about to die and not do anything. Right? And so that's what this is. And if you don't want this to be that, then that is to say that you don't want us to parent you anymore. And if that's what you want, then I really don't want to pay for college. If you're if you're that autonomous, that's rock and roll I go get a loan. Okay, listen, and I gotta be honest with you after school's over. I'm gonna look for another reason to be able to like to get her to like tell me she's okay. But be yeah, like I take I

Anonymous Female Speaker 1:04:40
think we kind of split on on the parenting.

Scott Benner 1:04:45
I tried to make a bombastic description of what it is but I don't think kids like don't get me wrong if art and push back hard enough I'd say alright, this is obviously something you don't want them we're gonna but we can't stay in this current setup. If that's not Part of it. So we're gonna have to change the set, which I assume is going to happen over time to begin with. But your points more about younger kids, your kid, you know, diagnostics, I

Anonymous Female Speaker 1:05:09
think that it's really different when you have an older kid. And even in the teenage years, it's, you know, possibly letting your kid to a lot of things that it's not the way that you would do it. And that's still fine. As long as I like basic rules that you agree on. I haven't gotten to the teenage years. So we can talk in five years. And I'll let you know if

Scott Benner 1:05:25
that works, right. You're looking for an equilibrium of safe and healthy. Yeah, that's what you're looking for. Yeah. But I loved your approach. Like, look, I found this thing. I think it might be better. We're going to try it. If it's if because what you know, is that very likely, it's not going to be a problem.

Anonymous Female Speaker 1:05:40
So within within a few days, she didn't care what buttons she was pushing. And it was really nice for her that I didn't text her call her as much when she was high or low because Luke was taking care of it. Exactly. And also, she only needed one device instead of two, which also makes a difference.

Scott Benner 1:05:57
Fantastic. I hear a high blood sugar. What number does that that Beeping?

Anonymous Female Speaker 1:06:01
Beeping? I heard two beeps. Hi, oh, this brings us right into diabetic goals. She Oh, she's 214.

Scott Benner 1:06:11
Now, do you tell her to Bolus? She's asleep?

Anonymous Female Speaker 1:06:15
It's 10 o'clock at night, you know?

Scott Benner 1:06:16
So are you gonna count on the algorithm to try to bring it down? No.

Anonymous Female Speaker 1:06:19
First of all, we changed her. We changed her pump right before we got on.

Scott Benner 1:06:24
Oh, so she's got like a little rise from the change in the cannula. Oh,

Anonymous Female Speaker 1:06:27
I think probably that and I already see that my husband lost quite a bit. I mean, he does like micro bolusing. Cuz when she's asleep, I don't want to crash. Sure.

Scott Benner 1:06:38
I'm a fan of Bolus.

Anonymous Female Speaker 1:06:40
Like we can see like if we think that loop is being aggressive enough or not.

Scott Benner 1:06:45
Especially with like loop or IEPs after a pump change if there's suggested insulin I like to see it in, because the site's not always

Anonymous Female Speaker 1:06:55
perfect. Right. Right. It's hard to say because sometimes it works really well afterwards. It works even better, because the pump site before it wasn't working, and then loop is being aggressive. And then she crashes. Exactly, yeah, let it ride for a little bit.

Scott Benner 1:07:07
So your point is, how are we supposed to expect a document and all that? All right, what's your next thing? What What are you talking about next outcomes? Or what are you going to say?

Anonymous Female Speaker 1:07:18
Oh, about the diabetic goals and straight lines. And we're not going to agree on this. So I

Scott Benner 1:07:22
bet you I bet you think something about me that I don't think about myself, but go ahead.

Anonymous Female Speaker 1:07:27
No, I'm sure. I think that, like there's a lot of talk right about mental health versus health and straight lines or small bombs, or what high alarm should be or if my numbers as a diabetic should be the same as non diabetic numbers to keep your child safe, which that you have said before. And I don't think that that's the right way of looking at it. I think that, you know, in all the studies, and it's kind of like you say with the TSH, right, like how they decide that that's the normal range, right? They did studies and they figured out what most people had. And that became the normal range in diabetes ated studies, and they saw when the when people started having different, you know, retinopathy and nephropathy and different things, right. And that's what they decided, you know, what the goal should be, if you don't want to have complications, and where that starts happening is what became the non diabetic, you know, the pre diabetes versus the diabetes, and afterwards, and those studies are really old. But I still think that you can learn from that you can learn a lot from that. And I don't think that there's a problem with a range of 70 to 180. And I don't think that there's a problem. Again, timing range, I feel like, obviously, you want to have the most that you can, but I think that you know, having, I don't know if somebody posted in so that they had a 6.3, a one C and an 80%, time range of 70 to 180. Those are really good numbers. And I don't think that they need to think or feel like it has to get better. And if they get better, your health is necessarily going to be better. Like my daughter's a one C went from five, six to five, eight less than, let's say, right? So and her title range went down from I don't know, 89 to 87%, or something like that. And I end within normal, the 70 to 180. And it hasn't been shown that that's going to affect your health. And I think that's important to know, like, what's evidence based medicine? And what's things that we think makes sense and a lot of things that we think makes sense, there are trials, and then they find out that it doesn't and that happens in oncology all the time, right? There's this like, amazing Dragon, I'm sure that's going to be amazing. And then they do a phase three trial and it doesn't work. So I think that it's not like being okay with being 200 for whatever that I don't know 7% of the day is or that that's not actually what's going to be causing the complications, or maybe even making your lifespan less and And let's say it is like let's you argue that it is going to make it a little bit shorter. If you're going to live to 84 instead of 86. Do you feel like that's really a shorter lifespan, like when I give somebody chemotherapy for testicular cancer, that's what happens. There's, they're cured. But they do die a little bit earlier than other people. Right? But nobody looks at that as being like, oh, you know, they just lost years of their life. Yeah,

Scott Benner 1:10:24
no, I mean, I agree with what you're saying. I think that the problem becomes the Hey, it'll probably be okay. Is great until it's not, and then there's no time machine and you can't go back. And so don't

Anonymous Female Speaker 1:10:36
think it's so it will probably be okay. Like, it's been, Shawn, that your chances for complications with an agency of seven. They decided even better if you cut that line at 6.5. And again, that's without CGM, and time and range and things that are super important, right? Like you can assume that those people in the trials, that part of the agency was they were having lows that were lower than we have, right. So yeah, some people for sure CGM and highs that were higher. So probably like even that data isn't showing you what it means to be in range now, like what it means to have an agency now of a 6.3. Like ar 6.3 is

Scott Benner 1:11:13
probably better. Yeah, so put yourself in my perspective, instead of yours. You're one very well understood person who's raising a kid with diabetes, right? And I think what you're saying makes a ton of sense. And I can tell you that my daughter has excursions up to 180, or 200. And we don't fret about them and everything else, okay. But if you're me, and you're talking to everybody at the same time, and they can't talk back, and I don't know who they are, if I start telling them, Hey, don't worry, a seven a one C is good. Do you not think that when they get to an eight, they'll be like, it's not bad? It's only one higher than seven? No,

Anonymous Female Speaker 1:11:47
I think that if you say that, you know, the ATA says that your agency should be below six and a half, and you have to work really hard to get there. Right? And that that's what's so important. Instead of thinking that it's, it may be that's for sure, or better. Yeah, I would say the way it sounds is that's for sure. That's for sure better to be in the fives or to want to be in this non diabetic range, right? That, to me is problematic when you're talking to so many people that you don't know, because in the end it like I saw posts on on Facebook, that kind of like, I'm a lurker, I only opened a Facebook account when we all got celiac, because I needed groups to know like, what's gluten free and what's not. And then I just added the diabetes Griffes to it. So I've never posted anything. But like, sometimes I see people who post things. And it's like almost a saying like, for me, this is a good number. No, it's not for you. It's for everybody having a six, three, a one C and having whatever was, you know, above a 70% range. Those are actual good numbers. You know, you don't have to apologize for that. You don't have to feel like people who answer like, Oh, it's a good start. Like it's not a good start. It's a good place to be. And I think that you can understand that without thinking that if I went from my six, three to six, nine, but that's not okay. And that I have to figure things out how to bring it back below that 6.5. So

Scott Benner 1:13:04
you're talking about health, and I'm talking about like psychology a little bit. So like, if you're, if you're, here's your kid gets into school, and they're in third grade, and they're getting a C in their class, do you go, that's great. That's average, you're doing great.

Anonymous Female Speaker 1:13:22
So it depends what I think that they can do, right? Like, my, my son is really good at math. And my daughter is really good at art and not so good at math. And they have like different things that they're good at. So what are my expectations from my son, in certain situations are different. And so you're talking to a huge audience, which I think makes it hard, obviously, to figure it out that I want to give people credit, that they're smart, and especially the people who are listening to the podcast, that are smarter, better diabetes, so that they know that they're trying to be healthy. That's why they're listening.

Scott Benner 1:13:59
Alex, it feels to me a little bit like you are coming at two different ideas from two different. So earlier in the conversation, you said, people need to advocate for themselves, they can, you know, they can handle it, they can do it. Like all this stuff. Like they're the ones that have to take control for themselves. But if I tell them that a five, five a one C is excellent, and a six is very good, and a six and a half is good, and a seven is even good. You don't think that they can modulate for themselves and decide where they want because

Anonymous Female Speaker 1:14:26
I think that you're giving a 6.2 b. And I think they should be getting an A based on I think that they should be feeling like they're in a really good, a really good place. And I find that the more that your numbers are arranged, it's also easier to keep them even more in range. If they're doing a good job in the Pre-Bolus thing. It could even get better and maybe it'll change influence and all get even better but it means that they're doing a good job and if they say six to their entire life. That's me.

Scott Benner 1:14:54
So I agree with you. I think if you had a six to budge, Agency for your whole life, York rocking it. It's fantastic if

Anonymous Female Speaker 1:15:01
you have type one if you don't have to replenish, right, but I also

Scott Benner 1:15:04
take, I take credence in the people who go like, but look, I don't have diabetes, am I anyone sees 4.9? So like, that's two full points over. How do I know that that's not going to lead to neuropathy when I'm 50? And I think the truth is, you don't know that or not. And I

Anonymous Female Speaker 1:15:21
know statistics. In other words, I know that statistically, obviously, there are people, right, who can have really good a onesies with soft some sort of complications. And obviously, there's, you know, the human body is super

Scott Benner 1:15:32
complex, but your statistics aren't going to help me if it happens to me. But you're, you're

Anonymous Female Speaker 1:15:36
telling everybody that it's better to have a 5.6 a one C? Who said that that's that that's better. And that's not making people, like you say people can handle it. But I'm not sure if that's really putting too

Scott Benner 1:15:49
they can handle some things, but not this.

Anonymous Female Speaker 1:15:52
No, you're saying In other words, that it's okay for people to feel like that's not the best and that they should be doing better? And I'm not sure that that's a mental toll. That's correct. When I don't think that you're right.

Scott Benner 1:16:03
Do you think that hold on? Do you think I've told people that if they don't have a five, five, they're failing?

Anonymous Female Speaker 1:16:08
No, I think that when you talk to people on the podcast, and they say their numbers, right, so you're so you're always very, very nice and specific about you know, and even when people post on Facebook, right, like if somebody said, like, oh, they managed to get from a nine to seven. Yeah, that is amazing. And that, that is a place where I would say, That's so great. Like, I'm sure you're gonna also manage to get down to 6.5. But it's when they got down to that below the 6.5. But I think that we have a different reaction to it. I

Scott Benner 1:16:36
mean, I the only thing I can tell you is that this is interesting. For me, obviously, and I'm interested in your perspective. I don't feel like I do that. And I don't think that I completely understand what you're saying. And I don't disagree with it. I reject the idea that I'm doing it. So

Anonymous Female Speaker 1:16:55
I'm I'm not sure. First of all, you know, people talk in different ways, right? And depends on the episode that you're listening to Sure. But I think that you can see in the Facebook group, how people perceive it, or at least the people who are really active on how you perceive it. Know how other people are perceiving it, you've they perceive their own diabetes. Okay.

Scott Benner 1:17:16
So so like if I, if I were to say to somebody like, hey, like, they said, Oh, I I started off at 11. And I have a 6590. My God, what a great start. That's amazing. You're reading that is, there's more to go. I'm saying in six months, look what happened already? What a great start to this whole thing.

Anonymous Female Speaker 1:17:37
Yeah, I think that you could read that comment, either way, or like other comments that you can't read different ways like that.

Scott Benner 1:17:43
So I don't so I genuinely,

Anonymous Female Speaker 1:17:47
like do. Do you not think that it's better to be in a non diabetic range? Because you think that eventually, I see no, I don't think you're out.

Scott Benner 1:17:57
I don't think it's better to be a five five than to be a CICs. Using just two random numbers. I don't think it's better to be a five five than a 6.5, for example, but I think is, is that if it turns out that it is when you find out, it will be too late.

Anonymous Female Speaker 1:18:13
But you already know that if you're below a 6.5, that your chance of complications are small, especially if you're keeping your time in range. So you're doing better than the people who are on the study is

Scott Benner 1:18:23
the chance not better if there's less sugar floating through your blood. That's I'm

Anonymous Female Speaker 1:18:27
saying, like you, you have to prove what you're saying, as opposed to disprove what's already been shown. So I'm sure they're gonna have to do major studies, but it's gonna take years you think that's gonna happen. Even with CGM? Yeah, they're definitely going to be going to be studies about people after CGM 100 People have complications. So

Scott Benner 1:18:45
in between now and then, all the people who don't get the benefit of the new study, if they end up being a person that has complications, oh, well, we didn't have a study. So we didn't know what to say to them.

Anonymous Female Speaker 1:18:58
No, we have a study that says that their risk is super small. If they're, if their kids are a one, C well below 16, I would tell

Scott Benner 1:19:07
you that I've spoken to people who, who exist inside of these agencies. And what I think you have is numbers that they think people can aim for. I'll tell

Anonymous Female Speaker 1:19:17
you, I had a really honest conversation with endocrinologist. Last time we went, we were the last patients so he had a lot of time. And he was asking me stuff about cancer. And I asked him about, like I said, like, what do you really think, you know, like, what? And it was a conversation that was doctor to doctor not doctor to patients? And he he doesn't think that that's correct. In other words, I think there's a difference between again saying that a seven is okay. Right, like good job and not actually looking at first of all, again, timing range and how low do you go when you're low and how high are you going when you're high and are you roller coastering or not? Right? Things that even if your timing range is okay. It's not healthy to be in a roller coaster. You're going from 60 to 200. And your time and range is decent, but you keep going up and down. That's not healthy for your, for your blood vessels. 1,000%. Right. So I think that when you're looking at all those things like he doesn't think that, that it's better to be lower. And also you had somebody on who was talking about that she thinks it's really bad for the brain to be low. But she actually actually also like writes about relevant things like a pancreas. And I think that, like, people should be worried about lows. For sure, yeah. Like even being, even being 60 for a long time might not be good for the brain in the same way as maybe being six and a half a one C isn't so good. Six, we know that 55 Right. 55 chosen because we know that that's a bad number, right? But it's probably not good to sit too low for very long trying to get

Scott Benner 1:20:53
are good numbers. I agree with everything you're saying just so you understand. So you understand that the part that I think that You're disregarding is that people aren't going to come to these things the way you're hoping they're going to like just because that's how they should do it isn't how they're actually going to do it. And I agree, I think

Anonymous Female Speaker 1:21:12
having a conversation about it. In other words, like I think it's that these are things that have to be said and have to be said like, I mean, again, you're talking to podcasters, I see something that gets lost that I see on the Facebook group, that it's like concerning to me, and I think there's things that have to be said, what's, what's evidence based, right? What's what we think the truth is somewhere in the middle.

Scott Benner 1:21:36
Okay, so I can agree with that as well. Let me ask you this question. Here's where you're outside of your depth a little bit. If I made a podcast, where every time, every time something like that came up, we went into a 10 minute excursion to explain it specifically. Do you know how many people would listen to this podcast?

Anonymous Female Speaker 1:21:56
Nobody explained specifically a few times, because the other side of it is talked about a lot. It's

Scott Benner 1:22:03
in the Pro Tip series. It's in the bowl beginning series, it's in all the that exists in all the management series, like both sides of the argument isn't isn't all of that I

Anonymous Female Speaker 1:22:12
don't listen to the management one so much.

Scott Benner 1:22:17
I put it there, like so. I can't, if

Anonymous Female Speaker 1:22:21
I'm saying like people in the end, like they listen to your podcasts, they listen to, you know, a ton of stories and like the end of demand management. I didn't listen to the protests at the beginning, but I didn't listen to the rest of them. But I think that like throughout time, like I've heard it a lot. Yes, I know when I'm in my car, and I'm getting annoyed. So

Scott Benner 1:22:39
it's fantastic. Well, listen, I appreciate what you're saying. And I don't discount it. I think I have said those things before. I think that everybody can't hear every word of this. And so that's where you get into the bigger problem. I can't force you to listen to the whole thing. You may get one episode where you don't get exactly what you need as a as a point of, you know, example, I got a review the other day and somebody's like, you're a misogynist. And I'm like what the hell and and I and so I looked to find out what happened. Some person I was interviewing use the word fan girl, I didn't even say it. Someone else said it. And now I'm a misogynist, because that person said fan girl and bla bla bla bla bla, and I'm like, Oh my God, if you listen to the episode, before that, you'd think I was you'd think I was Mother Teresa. But now today, because you heard that you think this. So there's no way for this is an ongoing conversation. People.

Anonymous Female Speaker 1:23:32
I just feel like that's part of the conversation. Like half I listen to the podcasts a lot on my way to work. Yeah. So it's not that I'm listening to just like what episode. And I think that it's really important that you say, it's important for people to realize that you can get a five point 6.8 A one C with eating everything, my daughter also eats everything, like art and right, and that you can do it. In other words, there are certain things that's really important to hear that, yeah, you can have a really good agency, you can have really good time and range, and you can still eat what you want. And you can still kind of eat like a normal person to think that those are really important things to be heard. And I just think that that also has to be heard somewhere in the middle. So

Scott Benner 1:24:10
I'm gonna, I'm gonna tell you something that I've said on the podcast number of times, I can't say it every day, because then nobody would listen, here's where my thought process comes from this. I think that generally speaking, we teach to the lowest common denominator. And I think that that's a disservice to everybody, not just to the people who are not the lowest common denominator. So my example would be if there's 20 kids in a classroom, and two of them are challenged, and five of them are a little below average, and five of them are average, and three of them are above average. And you know, the rest of them are brilliant. We dumb things down so that nobody gets left behind. But I think what that ends up doing is it's a disservice to the people, first of all, who you think the things need to be dumbed down for because you're treating them like you can't possibly understand this. And then everyone else gets sub standard information because we're busy talking down to people who we think can't handle it. And so I see the podcast as aspirational. Like, when I talk about that stuff there, I think of it as aspirational like you can, if you understand the timing of insulin correctly, and you have these tools, and you have this understanding, and you maybe eat a certain way that to help yourself, you could quite easily have a one C and the fives, and it would be very stable. And you could achieve it without Lowe's. Is that easy? It is not. You know, do I want you that

Anonymous Female Speaker 1:25:35
you can but you don't. You don't have to in order to be healthy. That's your opinion. But I would put on with it. But that's your

Scott Benner 1:25:42
opinion. Yeah. And so what I'm saying is, you're welcome to your opinion, you should share it with everybody you want. If I tell people that, and 10 years from now 20,000 People come back to me and say, I can't feel my feet, asshole. You said a seven was okay, what am I going to do? And so I'm telling you that I think it's doable. I also think if you have a six a one, C, you're doing great. I think if you have a six and a half a one, so you're doing great, I think if you have an eight a one C, and that's the best you can do, you're doing great. Like I believe that all the way through. I'm not saying one of these numbers is better than the other. I'm saying that if you have the right tools and the right understanding, you can probably put your a one C and your variability pretty close to where you want it to be. And then that's up to you to decide what to do with it, I can't come make you do it and or tell you that it's that important to do. And you might be 1,000,000% Correct. Maybe you can roll around a whole lifetime with a six and a half a one C and never have a complication. But there will also people that will have them and we will have complications. And I'm not comfortable saying you're going to be okay, because not everybody is going to be okay. And some of those people will have complications because they kept their agency where they kept it. And so here are the tools to put it

Anonymous Female Speaker 1:27:03
into the five, eight, maybe not, maybe maybe not exactly. Yeah, but we're

Scott Benner 1:27:07
both in the maybe maybe not situation. And in your scenario,

Anonymous Female Speaker 1:27:11
that in my scenario there, there is a lot of data to say that it's a safe place to be yes. And when you look at people, you're never 100%, right? When somebody has cancer, and they say to me, you know, like, What are my chances? I don't like giving numbers. And I usually say to you, it doesn't matter what the statistics are because you're 100% of yourself. Yeah. Right. So it doesn't matter to you if 90 Other people were fine, or if you're in that 10%. And it's also what I think. And I think that that's okay to say also about diabetes, bad things happen for many, many reasons. And there can be a lot of reasons why you're more susceptible to different complications. And it's not only the diabetes playing a role. Sure. And, and the data is there, that your chances of having complications are low, if you keep your agency below six and a half, and I would say more than you, I would say if you haven't ate a onesie, that's not good. And I would want you to be working harder to figure out a way that you can do a little bit better, whether it's talking to your endocrinologist, whether it's I don't know finding somebody else, some sort of coach to try to figure that out. Because I don't think that that's a good place to be. Right? Unless

Scott Benner 1:28:18
you've been in 11 Your whole life and you just got it to an eight, and then it's great.

Anonymous Female Speaker 1:28:22
Oh, then you're doing great, because you're a start. And there I feel like it's okay to say, Wow, great job. Amazing. Alex,

Scott Benner 1:28:28
you would have a very thorough, valuable podcast that no one listened to. And I know that because do you know the ADA has a podcast? That you didn't know that you want to know why you didn't know that no one listens to it. That's why it's true.

Anonymous Female Speaker 1:28:46
The reason that I listened to your podcast is because diabetes is really lonely. And that's the reason I started listening to it. And I hope that there's somebody out there listening to me say that, that's saying, Oh, we can calm down a little bit. Like if we felt if I was that person who wrote that post, and I got those responses. And I felt like oh, crap, like, I have to be crazy right now that maybe you can take a breath.

Scott Benner 1:29:10
I agree that perspective, I want to tell you this too. I think that when you look at the Facebook group, you are mostly looking at newer diagnose people. And so their fear is more amped up. And I do think if they stop and actually listen through the podcast, they would get to the place where you are, like with your understanding, but I think you're at your place because you're a physician. This is gonna seem out of left field for a second. But if you're running a country, for example, okay, you make decisions based on the greater good, right? If I if I can make a decision today as the leader of a country that keeps 90% of my citizens safe. And the other option keeps 80% of them safe. Well, I'm going to make the decision that keeps 90% of them safe, but 10% of the population is going to think I don't care about them. And that is a hard way to live. like being the person in that decision make. And I can see that from an outsider, like, that's a horrible decision to make. But somebody has to make it. I'm glad there's someone there to make it. I think that's the perspective you're thinking about this from, which is like weak. Like, we can put everybody into a situation where most of them will do well. And hopefully, that will be fine. And I'm just saying that I'm okay with that. I understand that big decisions have to be made. But I'm not comfortable being the person who says that in this context, in this context, I think you should know that while there is absolutely no data right now, to tell you that a five five a one C is better than a six and that a six is better than a six and a half. I know there's no data that says that. And it's very possible that you're 1,000,000%. Right. My point is, is that if you're not right, or if that data's comes up one day that proves us wrong, then it's too late. And I would read what happened.

Anonymous Female Speaker 1:30:55
Yeah, what happens if the way that you tell it right causes a fraction of the people to have a lot of anxiety, a fraction of the people to have more lows in the 60s? Not 40s? Okay, then they would have otherwise had, and those things cause complications and those things take years off your life. Also, why do you think that's happening? To be afraid of that? Also,

Scott Benner 1:31:21
why do you think that's happening?

Anonymous Female Speaker 1:31:22
Why do I think it causes people? No, no.

Scott Benner 1:31:24
Why? Why do you think that's happening? As a result of the podcast? Because it's not, as far as I can tell.

Anonymous Female Speaker 1:31:31
I don't know if it's not or not. And sometimes I get the feeling in the group that, that maybe some people do feel like that

Scott Benner 1:31:39
you think people are running around with 50? blood sugar's because they want their agency to be low.

Anonymous Female Speaker 1:31:44
No, but people are more okay with having 5% lows than having 5% highs.

Scott Benner 1:31:50
I think they have 5% lows, and they still have 5% highs.

Anonymous Female Speaker 1:31:54
Maybe Yeah, this is fun, feel worse about the high

Scott Benner 1:31:57
you and I should get married so we could kill each other? That'd be fantastic.

Anonymous Female Speaker 1:32:02
I thought you agree with me this whole time? It's like I told you this last one is gonna kill it. No, no, no,

Scott Benner 1:32:07
no, I don't not agree. So listen, I want to be really sincere. I take your point, I understand your concern. I think if you were me for five minutes, you'd soften it a little bit.

Anonymous Female Speaker 1:32:20
I think that you're right that my physicians outlook, right, my being a doctor. So it helps me maybe to feel okay with that with certain risks, and to be worried about other risks. The

Scott Benner 1:32:30
best part about our conversation is that hopefully, for anybody listening, what they realized is while they're busy fighting in their own lives, about whatever they're fighting about with other people is that neither you nor I is wrong. Yep, a blend of what you and I are saying is what's important. And I can only come at this podcast from my perspective. And in fairness to me, I've also had 1000s of conversations with people with diabetes. And so I do have maybe more than you or maybe even more than other doctors, I do have a feeling about how most people come off and what their concerns are, and what they're like, the bigger more human pictures are like, even when you and I were talking about the ER, like you were coming from a medical perspective, I was trying to come from a human perspective. And it's not that you don't see the human side of it. And it's not that I don't see the medical side of it, it's just that my perspective is more skewed towards. I've talked to a lot of people who go into a hospital, they expect to be faced with people who understand what they need, and very often they are not. And even though you told a story about an endocrinologist who didn't even understand how to Basal a patient, you still argued on his behalf before the other side of it, because that's your perspective. And I think that's very valid, because

Anonymous Female Speaker 1:33:50
I know that his boss, the one who I talk to about my 2k patient Senate, right, super smart. And I don't know if she if that's when he talked to but the person that I talked to after that patient, I saw how super smart she was. Yeah, and how much she knew. And I think that, again, healthcare is different, where you're living, right? You're living in a place that's a big city or not. And the doctors are calm are different. But I think that most most of the healthcare, at least here it's pretty darn decent. Oh,

Scott Benner 1:34:24
I think healthcare is great, right up until you get into these drill down situations where nobody knows what they're talking about. And you think that they do in this series where your episode will be. There is an ER nurse in America who has type one diabetes who said the words I'd be safer having a seizure at your house Scott than in the ER I work in. Now. How is that possible? How is that possible? Did you hear her tell the story of a person who worked in the hospital have a low blood sugar and they tried to send them out for a CTS instead of checking his blood sugar's make

Anonymous Female Speaker 1:34:54
me wonder, Where does she work? Where are these doctors coming from because even all like the stories about misdiagnosed type twos. I mean, that was really basic in medical school. If you have someone who doesn't look like they're type two in terms of the other, you know, their physical attributes and stuff like that. I'm not saying that somebody who's overweight can't have type one. I'm saying we didn't like learn, right that if somebody doesn't look like they would be type two, whether they're young, right there below 40, their weight is in, you know, they're not overweight, they're active, that you should look for something else that you should look for, maybe they should look for type one that you should look for ladder, like those were things that we learned in medical school, and I went to medical school 15 years ago, right?

Scott Benner 1:35:36
She was standing in that er saying he has diabetes, we should check his blood sugar. And nobody, no one would listen

Anonymous Female Speaker 1:35:42
to her. You got to look at the system that's cranking out the doctors because that I don't that I think it's negligence. I don't think that, of course, most of the time. But that's the type of care that people, but that's what you want to believe. And I think I see, it's what I see in two hospitals that have pretty hospitals that I've worked at, right where you are.

Scott Benner 1:36:01
Yeah, but my point is, is if that exists anywhere, it's not okay. Right? Yes. Ah, so, should we act like it's not happening?

Anonymous Female Speaker 1:36:14
No, but I think that doing, trying to educate doctors, as always, you want to educate doctors, right? First of all, checking somebody's blood sugar, right? When they're having seizure, or when they look like they're having a stroke. Like, again, that's basic medicine. But it's not, like, not something weird or crazy, right? So if they don't know what to do that that's really problematic. Yeah. And again, I think that the educating doctors is more educating, like, these serious conditions can become very serious very quickly. And you have to know that they can become very serious very quickly. I agree with that. When somebody says those words, type one diabetes, the first thing you want to do is just check their sugar for a second, just to figure out where they are, does it have to do with diabetes does not have to do with diabetes, and not a whole again, I only listened to half of the first Grand Rounds, but a lot, a lot less, a lot less and a lot more respect, I would say or to what doctors are able to do. And there's

Scott Benner 1:37:13
plenty of good doctors. And I would expect that if they listened to the Grand Rounds series, they'd say, Well, that's not how I do that. But I do see that other people do it that way. If they're insulted by that, I don't know what to tell them. Like go fix your profession, if you don't want people to say this. But you have no idea how many like positive notes, I got back about that series from people with type one diabetes, who have been through the healthcare system and treated poorly and left to die, and all the other things. And they're like, Thank God keep saying this, because maybe a doctor who is bad at it will hear it or maybe a person who has type one diabetes will go into a hospital,

Anonymous Female Speaker 1:37:46
they won't be able to hear her though, when it's stuff like that. They'll be able to hear it when it said,

Scott Benner 1:37:51
how should we say it to them? How do we tell them they're bad at their job? And they don't understand anything?

Anonymous Female Speaker 1:37:55
I think that you don't want to say like that.

Scott Benner 1:37:58
Yeah, no, I don't I hear you. How do you tell? Like I would

Anonymous Female Speaker 1:38:02
want the Grand Rounds series, right to be something that I could send to my colleagues who I do respect and I do think are good doctors, right? And just like as i Hey, like, listen to this, it like really puts perspective on tape. While I'm like I listened to one of the one of the people talk about doing a PET CT with type one diabetes, somebody who had cancer. And then she got diabetes through immunotherapy. Yeah. And it was really interesting to know them and colleges to just like, see that perspective of like, what am I asking of somebody when I'm asking them to do a PET CT, and they have type one diabetes. And I think that that's the like, I want the good doctors to also be able to listen to it and not be like, Oh, that's not me. But to be able to listen to it and say, like, Oh, interesting.

Scott Benner 1:38:45
I could incorporate this, I'm gonna tell you a secret. I didn't really expect doctors to listen to the Grand Rounds series, I wanted to couch the conversation in a perspective that let people know that you may or may not get a learn a doctor, and that it is up to you to take care of yourself. And here are some examples of why. And I did think it would catch some doctors, which by the way it has I don't know if you've noticed, but the series has expanded to include other doctors who have come on want to add their voice to they did listen to right. Oh, I see. And so and and how were they they were pretty good conversations, huh? Yeah,

Anonymous Female Speaker 1:39:19
come off smart. And they come off as doctors know what they're doing.

Scott Benner 1:39:23
Yeah. And I agree with you completely. Except I think people need to know that through randomness. They could land in the ER who doesn't even understand how to treat their hypoglycemia where that they're even experiencing again, but

Anonymous Female Speaker 1:39:36
I don't want somebody to think that the ER is a place where they should be getting health care advice about their diabetes, you should not listen to any doctor who's talking to you about your diabetes, except your primary care in your endocrinologist because people will say incorrect things are you

Scott Benner 1:39:48
just expanded beyond what I said? Do you not think that people in an ER should know if you're experiencing hypoglycemia and how to treat it?

Anonymous Female Speaker 1:39:54
No, no, I'm saying yes. I don't want you to listen if that er Doc's sound too. It's like, Hey, I wouldn't see a seven, you should really be making these changes. Don't listen to them. Because they don't have enough experience. Who do I listen so to your endocrinologist, and you're one of my, and well, and because diabetes is a disease where in the end, you do no more than your endocrinologist and my endocrinologist told me like I asked him for to Moloch to go along with the loom Jeff to sit it went sting as much as I saw that some people do that, but they mix it. Yeah. And I was worried that if it stung that she wouldn't my daughter wouldn't give it a chance. Right? Right. So I asked him for it. And he said, learn new things every day. Right? Yeah. And that he learns more from his patients, you know, like, in the end, diabetes is a disease that it's ours. And we're gonna know more than endocrinologist. And there's nothing you can do about it, right. And what you have to do is to look for places where you feel like you get good information, I agree with you looking for information and reading it, and listening to different podcasts and looking at different groups and leaving the groups where you feel like there isn't good information.

Scott Benner 1:41:04
Well, this has been fun. I've enjoyed this more than many things that I've done in quite some time. Also, I think when you listen back to it, you're gonna hear where I expertly helped you to make my point for me. So. But

Anonymous Female Speaker 1:41:17
I don't know if I want to listen back at all. Maybe I'm thinking that I got you to see my point.

Scott Benner 1:41:26
I know, right? I know, I can't wait to find out what it is. Serious seriously, you and I should make a podcast together where we just argue about my podcast, and I think it would be fantastic. I think I think that would be more popular than this. But being sincere Alex being sincere. I'm doing my best to spread good information to people. And my assumption is they will pick it up and take it where they can and where they can't. And I do. I do imagine that there are some people that hear it, and it makes them anxious. And I hope that they stop listening, if that happens to them, Why

Anonymous Female Speaker 1:41:58
I hope that they listen to this episode, and they say hmm, we don't have to be so anxious, we can take the good and leave the stuff that's not good for us.

Scott Benner 1:42:04
I also as the person who's been making the podcast for the last 10 years, don't think that I've left people with the idea that if they're a once he's not five, five, they're not doing well. And, and so. But what I would say to you, moreover, is that I have done a thing with this podcast that no one else has ever done. I've brought diabetes information to people in a mass and made it entertaining, so that they come back and learn more and stay in the conversation longer and have more experiences that they won't get to have in their normal life. And I've I watched for, I'd say probably seven or eight years while I blogged in the diabetes space. I watched companies try to do it, they tried to build communities, they couldn't do it. Some of them would build a community for five seconds. They couldn't maintain it. They'd fractionalized they'd fall apart, etc. I have a 50,000 person Facebook group, and it adds 150 new people every three days. And that's not because most people are anxious or scared when they're there. And I could show you 1000s of emails from people who write to me saying that I saved their life or their child's life. And I don't think of myself that way. But they do. And so I take your point. But I think that overwhelmingly, that's not what's happening. And I think that partly the reason you feel that way is because you're a newer diagnosed parent. And I imagine that five or six years from now, you won't feel the same way if you're still in that Facebook group. But that's just been my experiencing

Anonymous Female Speaker 1:43:30
watching that I wouldn't feel that other people are anxious.

Scott Benner 1:43:33
You you I think right now your anxiety is helping you feel

Anonymous Female Speaker 1:43:37
super nice, anxious person. Okay. That's

Scott Benner 1:43:41
fine. I'm good. Again, that's just my

Anonymous Female Speaker 1:43:43
I, I get Yeah, it worries me when I see how people answer sometimes, or things that are said for them. I'm, I'm really super calm about diabetes.

Scott Benner 1:43:54
So So here, let me tell you some things you don't know. When you see a Facebook post that has 20 comments in it. I actually know how many people read the post. So yes, you hear from three people who are like, Oh my God, this makes me anxious or whatever, however, that makes you feel. But what you don't see are the literal 1000s of people who read through the post, and don't feel anxious about it. So there are three anxious people and I feel bad for them. And I hope that there's something else out here that helps them not feel that way. But I'll trade those three anxious people for 7000 other people who now No, I'm not talking

Anonymous Female Speaker 1:44:32
about the people who write in the post, the person who posted it, the person posted on a group, right? Yeah, but you really you really want it to be a group of support. I'm worried about that person, not about other people. You should scroll over what you don't want to read.

Scott Benner 1:44:46
Well Wait, what about their post is concerning, like given example.

Anonymous Female Speaker 1:44:51
Like somebody put their graph up and they're like, How can I fix this? I forgot what it was like the spikes or something right and And people came in with like a lot of different things. And I will say the person who asked it sound sounded a little bit more newly diagnosed and sounded a little bit anxious. And the graph with 90 plus percent in range. Yeah. And I think that,

Scott Benner 1:45:15
but they want to make it better.

Anonymous Female Speaker 1:45:17
So it's fine. It's fine. If you want to make it better, I just would have wished that there would have been more than one person who came on to say, Wow, that's a really great graph, just so you know, you know, and they're, you know, there are a lot of different ways to try to, you know, make it even more stable. But

Scott Benner 1:45:33
they didn't ask if this is a great gap Gara, they asked, How do I make this better?

Anonymous Female Speaker 1:45:38
I forget how I was asked, but it didn't sound like that to me. Again, I don't It's not like I don't actually remember each post that I saw and why it felt like

Scott Benner 1:45:47
I don't obviously know the exact post you're talking about. But I know posts like that. And what I'm going to tell you is that you have to respect people and answer the question they ask. Like, you can't sit if somebody comes in and says, How do I Bolus for this thing. And it's a giant cupcake with three cupcakes stuck to it and ice cream on top of it. You don't come in and say if you ate low carb wouldn't be a problem. Like, right, because I totally, that's not the question they asked. So if I come in with a great graph, and I say, hey, how do I improve this graph? My expectation again,

Anonymous Female Speaker 1:46:18
we're talking about something that like I can't I don't actually remember what the posts are let

Scott Benner 1:46:22
you come up with the example. But okay, that's part out. You should No, no, take this part out. You should have your own podcast. He should call it arguing with Alex, I think it would be fantastic. And every week, someone just comes on, you pick a topic out of a top hat and you start arguing about it. Oh, my God, I've listened to that. You were terrific.

Anonymous Female Speaker 1:46:42
I only know a lot about two things. Oncology and diabetes.

Scott Benner 1:46:47
Would that stop you from arguing about something you didn't know about? Yes. Oh, wow. Good for you. I would argue about anything. I think it's funny because great. I so enjoyed this so much so that I have to pay overtime for the editing and I don't even care. So sorry, unless you want to send me a couple of dollars. But I'll make out.

Anonymous Female Speaker 1:47:06
I explained that doctors don't make money here. So

Scott Benner 1:47:11
I so appreciate you doing this. I hope that comes through. I thought this was fantastic discount.

Anonymous Female Speaker 1:47:17
Thank you for having me. Oh, it's

Scott Benner 1:47:18
a pleasure. Hold on one second for me.

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'd like to thank the blood glucose meter that my daughter carries the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now. And links at juicebox podcast.com To contour and all of the sponsors. 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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