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Scott Benner 0:00
Hello friends, and welcome to episode 861 of the Juicebox Podcast.

Today, on Best of the Juicebox Podcast, we'll be revisiting episode 227 was called diabetes concierge and aired originally on April 30 2019. Back in 2019, I had been approached by a listener of the podcast, who asked me if I had ever considered looping for my daughter. And I wanted to learn more about it. And Katy De Simone was kind enough to come on the show and explain it to me. I didn't keep up with Katie after that, although I was very aware of all the hard work that she put into the looping community. And then I remember one day, I think in 2020, probably spring of 2020. I noticed on Katie's social media that she had like gone on this health kick and was working out and doing so like wonderfully in it. It made me track her progress. So I was keeping up with Katie on Instagram. And then one day the pictures went from workouts, to a brain scan. And that's when I learned that Katie had a tumor. She shared her experience right there on Instagram. And I'm looking now at her account. And that post was put up just at six weeks ago. I heard the bad news yesterday that Katie had passed away. And while I didn't know Katie personally and just had this one interaction with her, she was always just a very impressive person from afar. The work that she put in for loop for everybody, including her daughter, who has type one diabetes is immeasurable. Her impact on my life, my daughter's life and have many of you. It can't be properly accounted for. And so I wanted to run this episode today in honor of Katie, her family, and her her good work. Hello, and welcome to episode 227 of the Juicebox Podcast. Today's episode is sponsored by the Dexcom G six continuous glucose monitor, by real good foods, and of course dancing for diabetes, you can go to dexcom.com forward slash juicebox. Dancing the number four diabetes.com or real good foods.com To find out more about the sponsors. Now when you go to real good foods that calm and you place an order, you use the offer code juice box to save 20% on your entire purchase.

As you well know nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And you should always consult a physician before becoming bold with insulin or making any changes to your health care plan. Today's guest is Katie De Simone. And you're going to want to hold on to something because I think what I'm about to say next is going to take you by surprise. But one of our listeners Gina brow beat me browbeat me online into trying the loop now that it's available for the Omni pod. And so I got Katy on the show because she is about the loop easiest person. That doesn't sound right. She's really entrenched in the world of looping. She's not loopy. She's actually delightful. Anyway, Katie came on. She explained to me everything about looping and I had a bit of an epiphany that I thought it might actually help me help you. So I said, All right, let me try it. So sit back and relax and listen to the conversation that I had with Katie that made me think. Alright, I'll give this a shot.

Katie DiSimone 4:15
My name is Katie De Simone. And I work for tight pool now. And I'm also part of the DIY loop group. So I have a little bit of dual hats in that respect. And so sometimes I try and clarify which hat I have on.

Scott Benner 4:31
Which one are we wearing today? Both one?

Katie DiSimone 4:34
I'm imagining probably mostly the DIY Katie hat. Because loop has had a very exciting announcement this week that it now integrates with the Omni pod.

Scott Benner 4:45
Okay, so if you have to change hats, just make an announcement before it happens.

Katie DiSimone 4:49
Yep, we'll do.

Scott Benner 4:51
Katie, I'm gonna give you a tiny bit of background on me and what I think is probably the feeling of more people than should be and And then we'll move from there. So my daughter is going to be 15. This summer, she has been using it on the pod since she was four. And because I think greatly, because of the things we talked about here on this podcast, her agency has been between five, two and six, two for over five years. She doesn't have any diet restrictions whatsoever. And we just kind of, you know, figured it out a little bit. But I also want to stay, I want to ride the wave, you know, on the crest of the wave, I don't want it to crash down and then just be, you know, going back out to see you. And I'm like, What's the loop? So I'm excited. I've said before that the documentation scares the heck out of me. But I got cajoled harshly by somebody online. And they were like, try, just try it. Just try it. And then she finally said to me, look by the Reilly link, and if you don't like it, I'll buy it from you. So Gina, this episode is for you. And for everyone else. I think we need to just first kind of it as simply as possible, let what loop means make sense to people? Can you do that?

Katie DiSimone 6:09
Yes. Basically, loop does what most of the general population I call a muggles, the people who aren't living with tea, Wendy, what most of the Mughal population thinks happens for tea Wendy. That's what loop does is that they see if you explain to a muggle that you have a continuous glucose monitor that provides you information about your blood sugar every five minutes, and you tell them that you dose insulin off your insulin pump based on your blood sugars, they assume that those two systems talk to each other. And that's, as we all know, pretty much not the case on any commercial product. These days, with the exception of very recent developments, relatively speaking of the 670 and Basal IQ, which does half of that equation, it responds to low blood sugars. So what looping does is that it takes that and closes the loop. In other words, your insulin dosing will actually be based on CGM data without having your brain involved in that or your fingers involved in making pump button pushes. So in the simplest form, that's what it's doing is that affecting any given time, you would have looked at your CGM data and known that you had eaten and thought, maybe I should give a little bit more, or I should suspend. Or I should decrease my insulin. That's what loop is doing for you. Now we're loop itself with a capital L. As opposed to a little case L of sort of the general concept of looping. What loop app itself does is that it puts all of that into a really simple, wonderful interface of an iPhone app. In all the traditional ways you love Apple products for their ease of use that you can just look at it. And it makes sense for what you're looking at. That's what loop is. It's an iPhone app that sits on your app where you can easily enter all of the information about the food you're eating the Bolus is you want to give where you're headed, what your settings are, it's basically all moved off of a device that you have to fetch out from underneath your sweater under your dress. It's all now on your iPhone, where you interact with most of your day anyway. And for my kid, the iPhone is almost an extension of her hand, because she's 16. She is on Spotify and Instagram and all of those other kinds of things. And so bolusing from her phone is a really natural place to put her diabetes management. For adult users, most of them are really psyched on the watch for bolusing and entering carbs. It's super discreet. You can do it at a professional meeting, and nobody's going to ask you, are you being rude or somehow ignoring things you can take care of it all on the watch.

Scott Benner 9:11
So most of you know that I'm speaking at the dancing for diabetes touched by type one event on May 18. in Orlando, Florida. If you're in the area and you'd like to come, I don't think it's too late. Check out dancing for diabetes.com. But if you can't make it, dancing for diabetes is like I don't know auctioned me off or something. All you have to do is go to dancing for diabetes.com Hit the Donate tab, make a suggested donation of $10. And when you do that, your name will be like in a hat. I'm gonna pull from that hat while I'm down there on the 18th. And I'm gonna pull up three names two of those names. I'm gonna have a 45 minute phone call with you. And one lucky name, one hour phone call and a 30 minute follow up and if you don't want to use the phone, we could FaceTime we could Skype, I could be out the window smoke signals. I don't care. Now listen, if you don't want to talk to me on the phone, I appreciate that but don't embarrass me okay, you hear what I'm saying? You guys gotta get on there and do this so I don't look like a schmuck. The expected numbers out of this the whole like Scott phone call thing Imagine if three of you do this I'm gonna look like an idiot. Alright, so don't do it for me don't do it for the cute kids dancing for diabetes. Oh, you know, do it for me do it for me so that I don't look identity. To have your name including this opportunity go to dancing for diabetes.com click on the Donate today button between now and May 17 2019. Make a suggested donation of $10. And be sure to mention juicebox in the notes. If you don't have internet access, or flat out just don't want to make a donation but you still want to submit your name. You can do it by mail. I mean, God bless you if you're gonna do that that's like a stamped envelope and I don't know what you're even writing there juice box and the thing and it's got to get there by this. I mean do it if you want. I'm just saying a lot of work. I hope to see on the 18th but if I don't, I hope we can talk

in its very basic form, all the things that we all sit around thinking are always simplified for us right like I think much like most people like artificial pancreas will come one day and what that means is my glucose monitor will talk to my insulin pump it will make decisions for me and I won't have to think about it. And that really is this it's this in real life. It's It's your right now it's Dexcom right you loop works with Dexcom CGM

Katie DiSimone 11:28
correct loop works with all the Dexcom CGM, so long as the g4 has share capability. It also works if you're on one of the older Medtronic pumps, it works with the older Medtronic CGM systems.

Scott Benner 11:42
Gotcha. And this is quite literally something that was done. I don't know what the word is. Is it a consortium of people like how do you think of it when you Is it a a cabal? Are you guys which is like what is? What is it exactly? Like? How did this how did this begin?

Katie DiSimone 11:58
The story started long before I ever got here. And it's a web of people in the most simplistic of forms, and it'd be too hard to name everybody who's been involved. But basically people across the nation were frustrated with where the state of diabetes gear was that it wasn't collecting information for the patient that it was residing in silos separate from each other and not being integrated. And so people started taking actions smart people who had the capabilities of and I use the term hacking, because that's what comes to mind for most people. But not hacking in the nefarious way. Hacking, as in I know my information is in here, I just want to see it, I want to use it to better. Basically all these people across the country, we're all working on separate parts, that all ended up through the wonders of internet, finding each other and they all moved closer together. So people who are working on understanding that Dexcom and making that more available before share was around, met with the people who were decoding the pumps and people who were doing algorithms, and they all started to form together till eventually, these closed loop components were all close together, okay, where my involvement came in, was my daughter was on Omni pad for about a year and a half after diagnosis, and was doing great with it. And then she started high school. And when she started high school, she told me Mom, I want to wear tube pump. I said, Well, why do you want to wear to prom? This is the opposite of where most kids go. She said, I want my diabetes to be more visible. Okay. It's an odd thing to request at high school time, but I'll go with it. And I said, Well, I've been stalking the internet. And I saw that these really smart people over here who are working on this open APS system will get on an older pump and I'm gonna have to get an older tube pump. So if I could find that maybe I could get two birds with one stone and automate some insulin delivery and that might help make our lives easier. So that's what that's how I ended up here was that my daughter wanted it to pump I knew I was gonna have to buy a used one mine as well. But the problem at the time was that the US pump system this open UPS system at the time was really bulky, and would require a lot more than a teenager was willing to give it time and attention to at the time. It's gotten better. So I was looking for small open APS systems and I was searching the internet frantically going, somebody must have worked to miniaturize this. And that's when they came across loop, which is a different system than opening EPS, but conceptually still the same automated insulin delivery based off your CGM ratings. So when I saw that it fits on a phone and it's a really small sleek form factor, it's that, yeah, I could do that. And when I got there and found where the project was, didn't have a whole lot of information about how to build it. So I spent a lot of time with Google, and putting myself out into uncomfortable spaces of trying to figure out how to build an app onto a phone when I've previously never done that. And with some help of some very nice people on the internet, who answered my questions, and Google, I got a built. And I was so excited. And it worked so well for us that my involvement that I committed to as a kind of pay it forward movement, is that I would write the documentation so that other people could come after me and be successful with it. So

Scott Benner 15:43
you're the translator you Yes, you took complicated, technical, almost geeky and weird and turned it into something my brain can absorb? Yep. Is that what's at the loop kit? Dot GitHub dot whatever dot fours? Yeah,

Katie DiSimone 16:01
even that, even that I wanted to simplify. So it's, it's loop docs.org LOPDOC s.org

Scott Benner 16:11
O P, I'm gonna write to a DSC s dot o RG

Katie DiSimone 16:15
and be intact. It's really, you know, honestly, I totally get it like when you when you come into something technical. From the first start, as soon as you tell somebody, you're gonna build an app onto your iPhone, half the audience leaves the room and goes, I can't do that. And what I promise you is that you absolutely can, it is really, really not as hard as hard as it seems. It's super, super simple.

Scott Benner 16:42
My understanding here would be that this is not, I mean, this is not a medical device company, right? That's giving you this, basically an algorithm that's going to tell your CGM gonna tell your pump what to do with the information from the CGM. So no one can take responsibility for this. If you do this, it's it's on you right now. It's it's do it yourself in the most most meaningful way you are doing it yourself, no one is helping you if something goes wrong, it's all on you. It's a decision you're making on your own. And it says that very much, right? I'm just saying now, it's the first time I'm looking at, at loop. docs.org says you take full responsibility for building and running this system, and you do so at your own risk. So if you want to get involved in this right now, Katie is going to tell us now about how to get it set up because and I know everyone who listens is going to be thrown off by this. I'm going to try it. And that trust me, Katie, you have no idea. Everybody's just like no, Scott said he was scared and he can't do it. And trust me, I am scared and I can't do it. But I think that by having Katie on the podcast, I now have a Sherpa that I can bug. I am going to figure out how to do this. And then I'm going to report back to you guys how I did it. And then I'm going to report back to you if I like it and whether or not we're gonna stay with it or not. Because Katie, while I believe that this is incredibly important for the large majority of people with type one diabetes, I think they're going to have results that they've just never seen before. We already have really good results. So if this improves my life, then I'm all for it. By the way, like I'm not I have no, I have no ego about this. I don't need to be making decisions about Temp Basal increases and Temp Basal decreases, like you know, throughout the day, I don't care if I would like it to just work. And so I'm super excited to try it.

Katie DiSimone 18:32
That's, that is, you know, you you just said something that kind of triggered in me. A funny part. But it took me a long time. We've been looping for two and a half years, roughly. And I've had an evolution and how I appreciate the system. When we got on it. We were fairly low carb only because it was the only way we slept at night. We just you know, we were going through an evolution we were only a year and a half in. It's a teenager, she's changing. We're changing. It was very, very hard. So we got on loop. And it was at the time, we were mostly focused on E one Z and blood sugar control and all of that kind of mindset. And then she became a tea and she wanted more independence and I wanted more independence. I didn't want to keep talking to her about diabetes. This was silly. That's just we had a life to live. And what looping has done is is made me realize just how much potential damage I was headed into with navigating that very complex transition of an independent type one team. And loop gave me back the ability to understand how to let her live her life and how capable she was and how she could do this and that the other Part of relieved for me is part of the reason I was doing so much help on it was I felt like if I shifted that responsibility that she was asking for even though she was asking for it, I still felt a huge, enormous guilt that I was somehow saddling her with now this enormous responsibility. And seeing Loup work for her literally like a like a, like a nanny, like a personal assistant that carries the umbrellas of the rich and famous stars. And, you know, the movie festivals kind of thing. Like, who can afford that? That's how Lupe has been for us is that it's this umbrella carrying personal assistant for her. That makes that shift over so much easier.

Scott Benner 20:41
Yeah. Insulin concierge? Yes.

Katie DiSimone 20:44
That's a great, that's a great term for it. And so,

Scott Benner 20:48
Katie, patent pending?

Katie DiSimone 20:49
I think you should. That's your new that's a new hashtag, you should, should do that. Because it really, it redefined how our relationship was. And it took a lot of diabetes conversations off the table, which I'm so grateful for. And it wasn't at the expense of good. Anyone see results or all of that kind of stuff. It was less effort, less lows, great a onesies and less conversations. It was win win win all the way around. Yeah.

Scott Benner 21:16
So we have. So here's where my excitement lies as I sit here and just look at this image that you guys have up on the screen of the the loop app on an iPhone. So I'm not even though there are a couple of people who like to say that I have a lot of ego and I brash about, like how well we're doing. What I'm saying here is, I have gotten this figured out, my daughter doesn't go over about 151 70, more than about twice a day, she doesn't get dangerously low more than maybe about once a year, you know, we don't get under 70. Very often, she's mostly between 70 and 120 give a lot of stability. But it's come through these things that I'm now realizing as I'm staring at the algorithm, there are these things that the algorithm understands mathematically that I understand. In English, I don't know if that makes sense or not. And, and so I'm super excited to see the feedback from the app as far as like active insulin, insulin delivery, and glucose levels. Because I actually think that this app can take me farther in my understanding that I am and I really thought I was about at my peak. Honestly, I didn't think there was much more I can understand about this. But seeing this information, I think I can mine a lot out of it. And and, and really go on to be able to describe to people who don't have this app, my ideas but in better detail, and maybe more easy detail to understand some bumps. I'm getting excited. So this is good. Okay, so let's go through a couple of things

I need a Dexcom I have that. I need Omni pod because it works with Omni pod. Now I have that and then I need something called a Reilly link and as soon as you say that in the past my brain would go okay, I'm out Forget it. Right. But but but let's let's make it let's take away Riley link. And I don't know did you see Spider Man into the spider verse by any chance? No, I have a tastic movie you really have to make time in that one of the Spider Man men Spider Man's one of the guy's calls something electronic a goober he says there's always something like this in every one of my problems. I just call them all goobers. So let's call the Riley Linka goober. Okay, and so. So the pump has to get information from the CGM and your phone needs to talk to everything. The problem is, how does a phone talk to an insulin pump? It talks through the goober so that's it the goober is the bridge the Riley link is the bridge. Don't be scared by it. It's a thing that makes a connection in the future. There'll be there'll be some the I guess the Bluetooth pods right when for Dash comes out and then you guys will come out with something where that's right in the app and then the Riley link will be gone at some point, right?

Katie DiSimone 24:20
Yeah, so the DIY Katie says the Riley link is necessary because the pump speaks one language and your CGM and phones speak a different language. Gotcha. Your your phone and your CGM are speaking Bluetooth. There are over there speaking that one language your pump is speaking with radio. And so those two languages need a translator. And that's what the rilink does is it bridges or translates between those two different languages. So what tide pool Katie's hat is saying is that the next phase of looping will be when you don't need that translator and that the pump is speaking Bluetooth. and the phone is speaking Bluetooth and your CGM is speaking Bluetooth you don't need a translator anymore. And so the phone will be able to directly communicate with both devices. And so tide pool loops development is focused on insulin pumps that have an eye pump designation and Bluetooth capabilities built in.

Scott Benner 25:24
And can I ask tight poke at a question real quick? On the pods all for this right? Like I've spoken to them, they're super excited to have a relationship with tide pool.

Katie DiSimone 25:34
They are incredibly supportive. And kudos to them for recognizing a community need and stepping up and partnering with tide pool to do that I I am as a parent of a team Wendy actively involved in the DIY community incredibly heartened by the commitment they've made with title to bring that forward. Yeah,

Scott Benner 25:58
because at some point so that people understand, you know, let's say that we don't I obviously Katie's not gonna tell me timelines, and because you need to be able to hit timelines and their company and all that stuff. But let's just make up a day and say that a year from now, tide pools going to have this setup. So you don't need your grouper. And it's just going to talk to the Bluetooth pods right? On the pod might not be ready with their horizon system by then. But you can use you'll be able to use basically tide pools algorithm with loop to do that. If one day or when one day, excuse me on the pod comes out with their horizon, you get to decide you get to use their algorithm, then try the loop algorithm and say, well, listen, I this one works better for me, I'm gonna use this one on the pod completely okay with that, for those of you who are who are newly diagnosed, and have not been around diabetes for a decade, or more, like like I have, that's unheard of, for a company to just be like, hey, you know what, if this works better from you, and it's not from us, we don't care. Just we want you to be happy. That's insane. Like no one says that. Everybody always wants you to tie down and locked into their thing. But this is the beginning of a whole new world. Super exciting, you should be genuinely jacked up that Omnipod Zed on this, because this is just, I think the beginning of a lot of good stuff.

Katie DiSimone 27:16
It's a monumental shift. And it really can't be oversold or overstated. How big of a shift this is towards understanding the needs of the community. And saying, I believe that the marketplace can

Scott Benner 27:34
absorb this decide for themselves too.

Katie DiSimone 27:37
Exactly. And there's so many people that aren't on pumps. And I think there is a huge portion of people that aren't on pumps, not just for access issues, but also for choice issues is that there's not a product that offers them a lot of choice, you're locked into one. And for Omnipod to say hey, listen, we support our product, we support this new tide pool, whatever the system is, like you say there into the interoperability and you can choose and it's amazing, it really, it's it's visionary, and I'm completely supportive of that kind of vision. I think tide pool has that vision to putting on a little bit of a toot their horn here, but really a nonprofit coming in and saying we're gonna take on this, this huge task, it really is a lot of work. If it's amazing, and we have JDRF support for tide pool and Helmsley Family Trust is sponsoring a job observational study for loop users in the US, that's going to provide a lot of insight into how the system's working for people. So I really look forward to kind of getting this project down the road and showing what it can do for a lot more people who perhaps like you mentioned at the start, look at building an app on their phone and say, That's just not for me. Yeah.

Scott Benner 29:03
Okay, so we're gonna get to the building part in a little bit. But I wanna understand the using part. First, I want to talk about the fun part before I talk about the heart. Okay, so, Katie, you don't know me. But when my daughter gets a plate of food, I look at it. I think that's 12 units. And I'm gonna break it down into an extended Bolus. I'm gonna do 30%. Now do the rest over half an hour, we're going to do a Temp Basal increase of 75% for an hour and a half. And that's that. And then if I'm right, great, and if I'm wrong, I adjust. I don't count carbs. I don't know my daughter's insulin to carb ratio. I don't actually believe she has one. I don't believe any of us have one. I don't think there's a static insulin to carb ratio. And I don't think there's a static Basal rate. I think all of that some old timey BS way before this stuff was available to us before this technology. I think that was just the best people could do. And so how different is it going to be for me now? When that plate of food comes out, do I still get to guess at how much insulin is? Or do I now have to count the carbs? Or what's the real? Like how does it work in a real life situation plate comes out. What do I do? Are you looking for delicious low carb snacks and meals? Well, if you are, look no further than real good foods. You ready? You want to hear it. They have newest offerings, breakfast sandwiches that come and sausage and bacon of course they have the chicken crust pizzas, and personal supreme personal pepperoni and personal three cheese. Cauliflower Crust Pizza lovers. Do not miss the vegetable pizza, pepperoni pizza margherita pizza and cheese pizza. All of these come in delightful variety packs as well as one at a time. Have you had an enchilada for lunch lately? How about a pork enchilada chicken enchilada beef cheese, or go crazy and get the mixed case. Real good foods also has real good poppers bacon and cheddar, jalapeno, white cheddar, artichoke and cheese and pepperoni and mozzarella. Maybe you want the chicken crust pizza, but you don't want the personal size, go to the seven inch, again, cheese, supreme and pepperoni. And if you go to their website, they got a pro tips area. Now it's not like our diabetes pro tips. These are pro tips about how to cook the real good foods to perfection. Because real good foods want you to have a real good experience. Now what could make your experience better, better than having what I've just described you sent right to your home is having it sent to your home and paying 20% Less, you'll see other coupon codes out there for real good foods for 10%. But please, I told you a good foods for the Juicebox Podcast listeners 20%. I demand that and so it will happen real good foods.com use the offer code juice box, you can also find a link to real good foods in the show notes of your podcast player and at juicebox podcast.com.

Katie DiSimone 32:01
Yeah, so for you, it will be an adjustment because conceptually, the same statements that you just made all still apply. The difference is, instead of knowing your insulin dosing, you're going to be refocusing on carb entries, because you will have to use a carb ratio still, the whole premise of loop is that it makes a prediction of your blood sugar over the next six hours, and it says this is due to these factors. And one of those factors is your carb entry that you put into it, you say I'm going to eat 12 grams, this is what based on my carb ratio and my insulin sensitivity and how much I have on board, this is where it's gonna go. So the carb ratio is still an important part of making that prediction line. That said, it's, it's not an insurmountable shift, because I actually was much like you prior to going into looping is that I knew these things needed to extend a Basal and these things needed. Or extendable as, excuse me, or maybe these ones get an extra hit of insulin in two hours. Those kinds of things all translate and instead now instead of saying I need two units here, you get a carb ratio, and you say, Okay, if that previous thing needed two units, and my carb ratio is one to 10, you just do it now as a carb entry instead of an insulin entry. So well, it will be a shift,

Scott Benner 33:38
okay. And on the image I'm looking at right here, there's like pictures of like, I see a taco, I see pizza and I see candy, do I tell it 15 grams, and it's this kind of food?

Katie DiSimone 33:47
Yeah, see, that's the really cool part loop is the only system that does this. So for people who know after, after you eat a pizza for the first time, you know, if you gave everything that you need all upfront, you'd be low, and you'd be incredibly high later. So what loop dies, it's got this really amazing ability to extend your carb absorption and say this foods going to be a really long, slow burner, I'm going to be fighting the impact of this meal for six hours, or four hours, you can tell it that and the way that as you described, you know your meals, you know that this meal impacts your daughter this way. And it might not be the same for everybody. But everybody kind of has a sense of this particular plate of food kind of does this. And you can tell loop that ahead of time and it will watch for you. So for pizza, for example, let's say you have 100 grams of pizza, and you know that you need about 60 grams worth of that bullet up front. And maybe 40 grams of that later. And you think a bit in terms of your Temp Basal is that you send stuff but you could say I need about two thirds of that upfront and maybe a third of that whole Will insulin amount later loop actually has that built in, when you tell it your food is going to take a long time to absorb, it knows that if it throws all of the insulin on board early, you're gonna go low early. So it will withhold some of that Basal some of that Bolus recommendation, because it's going to keep you from going low early. And by withholding it early. It also knows that you're going to need some later and it will automatically add that as high Temp Basal as soon as your danger of going low, has passed. So it basically functions as an extended Bolus for you when you push that pizza button. Yeah, so

Scott Benner 35:42
I have to tell you that I had I'm so bad with names. But like two years ago, I had that that woman on the girl who like made her own AP, like, you're gonna know who exactly what she has? Yes, Dana, I had Dana on. And I had Dana's husband on, they did him in two different episodes. I don't know why I did that back then. But I thought it was interesting. And what I took away from those episodes where I just asked, that still is like a silly question. I was like, So how often does it Bolus she was really most of it's handled by Basal rates. And I thought to myself, like, it was like, somebody clocked me in the head and the light went off. And I was like, That makes so much sense. And that's it, that conversation helped me, you know, supercharge what I was already doing. I was like, oh, okay, I'm going to use more basil. As I look at this, my next question is, does it learn? Does it learn?

Katie DiSimone 36:34
Yes, and no, it doesn't learn long term. So for example, it's not looking at your last day or week and say, Oh, you look like you're running a little sensitive. It doesn't do that. But it does do some near term looks at how it itself has been doing. It looks as its own predictions. So basically, it looks over the last hour. And it says How close was I and if it thinks that it was really far off, it will wait the next 30 minutes of data and say I've been off a little bit, I'm going to help you out a little bit more, because something's going on in the near term. And we'll fix that. So in the short term, yes, it looks at its data, but it's very short term, in the long term. So there's this one thing you're talking about, like learning systems within loop, there's a really incredible line within loop. That's called insulin counter ACTION EFFECTS. It's a big name. But basically, what it means is that loop has a screen that you can tap on. And at the end of the meal, it will say you told me this was a 50 gram meal, actually, based on your blood sugar response and how it handled it, it actually hit you more like 63 grams. And so you can actually learn a lot from loop. When you look at your food at the end of the meal, you can go, wow, you know what? I see what it's saying, based on my blood sugars, that meal treated me as if I was 80. So you know, nutritional labels aren't right. And sometimes you're at a restaurant and you're like, I'm still trying to learn this meal. How, how much do I give up front? How do I, how do I Bolus this meal loop will provide that imp that impactful statement towards you, or for you at the end of the meal and say, Hey, that meal treated you like this. So the next time you go back to have that meal, you'll be better informed.

Scott Benner 38:25
So this is like a blown up idea behind all carbs aren't created equal. And yeah, and it's an extension of what I told you where I say I stay flexible, I put the insulin in and I see what happens. And then I stay flexible. So in for your knowledge. If I were to do a you know, do the regular Pre-Bolus that we do you know as far as time goes, and Arden starts eating and 30 minutes later, I see a diagonal up arrow, I do what I call stop the arrow, I stop the arrow from from going up, I use little bits of insulin to make a stop. And then the next time I would say to myself and I preach it to people all the time. You look at a meal and you think oh that's five units. And then you later use a half a unit to correct it. Well then next time don't look at the same meal and go that's five units say to yourself, that's five and a half units.

Katie DiSimone 39:14
You can't see me I have my hands in the air gone. Yes, yes. Yes, exactly. is dynamic thinking is probably the biggest tool you have in your tool belt for a successful

Scott Benner 39:26
career. I wish I knew what a moron I was that anything in life has struck me well is is absolutely a miracle but that I figured this out, you have no idea that it was me. Doesn't make any sense. Like this is not something I should have figured out. And I don't know how I think I A lot of times give a lot of credit to writing on my blog for so long and wanting to help people and seeing that I had to find out what worked for me. And then I would wait months I would never share anything right away. I'd like let me make sure this is really valuable before I tell somebody about Got it. And then I would tell them about it. And I kept building. And before I knew what I realized I had like these, like 10 basic tenants of how to keep a blood sugar stable. And I was like, wow, this is like a system. Like, it's a way. Like if I put it all together, it makes sense, you know? And still, I swear, I really wish you knew me because that I figured anything out is just hilarious.

Katie DiSimone 40:20
No, it is it is absolutely huge to have a dynamic attitude. If, if I always put it as respond to the information you're seeing, not the information you thought. And so if you're seeing that a meal is actually cheating you like 10 grams more than what you thought you had to give more, take that into account the next time

Scott Benner 40:42
and if the people who are listening aren't thinking right now, trust what you know is going to happen is going to happen, then you have not been listening closely enough. Okay. So you have to trust that what you know is gonna happen, it's gonna happen, you can't get high every morning at 8am. And every morning at 745 think, Oh, well, I hope it doesn't happen today. It's gonna happen. Give yourself insulin now. Right? Like so? Oh, I'm not see. All right, okay, let's calm down. Because I think we're coming up to the point where I'm gonna get upset and sad. So I see how it works, I see that my daughter will be able to, you know, count carbs and do things like that. I also, by the way, believe, holy that people eat mostly the same thing over and over again. So it's not like you're counting carbs forever, or trying to figure out how much insulin a meal is forever. Usually, you eat about the same 20 or 30 or 40 things, eventually you'll figure out figure them out. Dex, calm, you want a Dexcom, you might not know you want it or maybe you do know you want it one way or the other. You'll want it dexcom.com forward slash juicebox. Here's what you're going to get when you have a Dexcom, a G six continuous glucose monitor, you are going to get information. And as they say information is what do they say about information? There's a saying about homozygote? I know there's a saying about information. I got a right here. There's 486 sayings about information. It's not helpful. No, that's not it. Hmm. That's kind of deep from Albert Einstein, but not the one I was thinking of. Not that one. God, turn DNA is like a compute now. Or maybe there's not a saying about information? Well, I'll tell you what, I'll make one up right now, when you get the information back from your Dexcom, you make better decisions about your insulin. That's all. There's nothing else to say that information can come to you with a Dexcom. And a couple of ways. One way, share and follow available for iPhone and Android. You know, that means share and follow. Like there's an app share, and there's a app, you know, share app follow up. One of you probably like the person you love, who has diabetes has to share up and then another one of you, like a person who cares enough to pay attention to their diabetes has the follow up. And then there you go there diabetes does something that goes up because the ad is trending in one way is trending in the other. It's moving, it's dancing. As you can tell, I'm making this episode late at night. And I'm completely dopey. So just by a Dexcom dexcom.com, forward slash juice box links in your show notes in a juicebox podcast.com. You will not regret making the jump to continuous glucose monitoring with Dexcom. So here I am. I'm Scott, I'm standing in front of my microphone. And I have ordered my Reilly link, which is on backorder. And by the way, if you know anybody who can help me with that, Katie, I would appreciate if you put in a good word. It's going to come to me, my goober is going to show up in the mail. And there's other things I could probably be doing before it gets here. Is that true?

Katie DiSimone 43:48
Yes, you can do everything before it gets here. Except actually, you can build the app, you can get other things set up. If you're ready for it. If you're a Nightscout user, you could get your Nightscout set up you can you can do everything you can except for turn on the right link and

Scott Benner 44:09
Okay, and this is not going to get in the way, by the way of my Dexcom share, that's still gonna work fine. Everybody's gonna be able to see that stuff.

Katie DiSimone 44:17
Totally. It's still you can still actually use your exact same Dexcom app, your Dexcom alarms are all still the same. Basically what Luke does is it eavesdrops on your dex comms communications, and so it doesn't interfere with your Dexcom.

Scott Benner 44:31
Okay. All right. So, if you were me, what would you do first?

Katie DiSimone 44:38
If I were you, what I would do first is kind of conceptualize what your game plan is. Number one is, get your computer up to date and also kind of let me take one step back on my Instagram account. I do have a loop advent calendar that I did just kind of on this topic, as I was trying I need to prepare the community with this is coming. And here's a really small digestible day by day. Advent Calendar of day one, make sure your computer is up to date. Do you have Mojave macOS? I'm kind of explaining what starts to sound like technical stuff, just pay make sure your computer is up to date. And it has my Mac, is that right? It does have to be a Mac, yes, it has to be a Mac running what they call Mojave operating system, which is their latest one.

Scott Benner 45:30
Oh, I see your Instagram account. Look at you. You're delightful. Look at this. Very nice.

Katie DiSimone 45:36
So yeah, so you can run through each of those admins day by day and just sort of take it in tiny digestible chunks. And do each of those. Basically, you prep your computer and and this is the part that looks intimidating on the website. But it's actually not is that each of these are natural stopping points as I've tried to lay out the pages in the building the app section into natural stopping points. And so you prep your computer, basically, you want to make sure your OS is up to date your operating system and that you download a free app from your app store that comes from Apple is called Xcode. And basically what Xcode is, is like you present that code for the application for the loop application. And it compiles it all and builds it into a nice little package, you plug your phone into your computer, and Xcode puts that app onto your phone. So you're literally downloading the loop code from us online. And you're using a free app on your computer. You press like four buttons, and the whole thing builds by itself. That's how easy it is

Scott Benner 46:43
fancy as now, yeah, I have already while Katie was saying that, even though I swear to you, I didn't know she was gonna say it. I've already downloaded Xcode onto my computer. Yes,

Katie DiSimone 46:58
that's step one. If you get that on, it's actually a pretty big download. And believe it or not, that's the longest part of building a loop app is downloading. Okay, and then I have a cup of coffee, and you're good.

Scott Benner 47:10
Okay. And I need a developer. I have to be like an Apple developer. Right? Yeah. Because Because for everyone listening, I am technically making my own iPhone app right now. And they're gonna give you obviously all, you know, Luke gives you all of the instructions and the you know, and the code and everything you need for it. But you have to do that because it remains your responsibility. And yes, right. And in the future, if I want everything, you know, work in the way we want it to work, but tide pool and everybody's got their Ok's and their FDA clearances and everything like that, I will just download this app from the App Store I'm assuming or downloaded from tide pool.org or something like that. And it's gonna go right on my phone, I'm not going to need to be a developer or have Xcode or anything like that. Is that right?

Katie DiSimone 47:52
Correct. The tide pools project is basically taking the fundamentals of the DIY loop system, and taking that through FDA approval. So the study is going to help solidify what needs to be done to make that app able to be distributed as a medical device under FDA approval through the App Store. So yeah, that's where the that's where the two projects between DIY and type lube start to diverge is that concept of being able to download this on your app store on your iPhone, and what needs to be done to make sure that all the FDA clearances are done.

Scott Benner 48:32
So yeah. So so tight pull Katie, eventually, this is just going to be checkboxes and drop down boxes on an app.

Katie DiSimone 48:41
Yeah, what we envision is that you'll as type hello, Katie, I'll speak now is that you get to go to your endocrinologist, talk to them about your settings and your carb ratios and make sure that you have some reasonable settings, they prescribe a type of loop for you. You have your components, and you get to go to the App Store with your prescription number and download it.

Scott Benner 49:05
Okay. All right. Let me think. I'm thinking that it's coming in my head, I'm figuring it out. So it's going to look, it's going to look like a lot but Katie has as a person who's done this, not knowing what she was doing and getting what would probably be the best expert advice that she could as she was going along, has turned it into the simplest steps you could possibly have now. I'm going to do this and I'm going to whatever my Reilly link comes, I'm going to I'm going to be ready. I'm going to be set up and I'm going to go and I'm going to try it and see what happens. What is my expectation for a person who lives between 70 and 128? Like, in my mind, I think my first excitement is going to be sleeping soundly overnight. Is that is that the simplest win that I get from Luke, do you

Katie DiSimone 50:01
Yes, for sure sleeping through the night is unbelievable. I think I didn't know what I had started missing until I started sleeping again. Good example last night, my daughter was out to the movies with their friends and needed a ride home at 130. In the morning, it was a drive in double feature far away. And so I was up until 130. In the morning, I can't even tell you how tired I was. Because I've gotten used to getting a full night of sleep all the time. Now, it really was daunting to have to go back to the olden days of missing hours of sleep.

Scott Benner 50:37
You're making people cry right now you don't realize that but there's like 1000s and 1000s of people listening and they're like weeping in their cars. And while they're working out at the grocery store and stuff like that. So that's, yeah,

Katie DiSimone 50:47
I'm a I'm a different person. When I sleep. I'm a nicer parent, I'm a better spouse. There's like a lot that goes with sleep. Yeah.

Scott Benner 50:54
There's plenty of conversations in this podcast where I tell a story about I was so exhausted at one point, and I didn't know it. And then I went away for a week without my daughter. And about the third or fourth day into the trip. I thought to myself, Oh, my God, this is me. Like I remember having thoughts like this. Yeah. You know, like, and being clear headed and that sort of thing. So that's my, that's my excitement. Can I ask you something? Yeah, say I decide I like loop for sleeping. But I want to just stick with what I do for eating, can I do that

Katie DiSimone 51:26
100% You can turn loop has one slider, it's super simple. It's called I opened or closed loop. If you open your loop loop will let you just get the recommendations but not automatically put them in. So it will use your scheduled basil just like your normal pump therapy would, it would just give you your basil that you have programmed in. And you can choose to deliver the insulin any way that you want to, you can enter the carbs, and you can choose your particular Bolus sport. So let's say during the day, you want to say, You know what, I still am working out my carb ratios, I'm still figuring them out. I just kind of want to do it one meal on a convenient Saturday and see how my settings are. But in the meantime, during the week, while she's at school, I just want to keep to our old paradigm until we can get to, for example, right now I'm thinking summer, you know, summer, I'll be home, this will be easier. Absolutely. You can go to school, keep it an open loop, they can enter their carbs, provide whatever Bolus number they want, and loop won't be taking any extra action. And then when you come home at night, you can go ahead before you go to sleep at night, you can turn on the Closed loop switch, you just toggle it right over. And it'll be looping overnight.

Scott Benner 52:43
So being an open loop would show me what the algorithm is thinking because it would say to me, Hey, right here, if I was you, I do a Temp Basal increase of

Katie DiSimone 52:52
absolutely, oh, every five, every five minutes across the top, you'll see the recommendation update. And I'll say this is the new Basal rate I think you should set so you'll be able to see if it's greater than or less than where your existing settings are. And you'll see the prediction too, as well. You'll see the prediction go up and down. I think that's one of the first things that kind of freaks people out as they see that prediction. They're like, Oh, do I cheat a low now because it's chosen six hours, I'm going to be low. That prediction line is always as if no other actions are taken. And that's the whole thing is that loop is going to take actions to prevent or change what is in the future. So if you see a low coming in six hours, you don't need to treat it right now. loops going to be cheating it for the next six hours and staving that off.

Scott Benner 53:43
And so that never happens. It's just like a time travel movie. In a time travel movie, sometimes they show you what's going to happen in the future. But then the people in the past make better decisions in the future never happens.

Katie DiSimone 53:56
Yes, that's exactly what loop is doing for you. Is it saying? Oh, wow.

Scott Benner 54:00
And Katie, by the way, now you know why the podcast is popular because I can take incredibly complex things and turn them into moron talk that everybody can understand.

Katie DiSimone 54:10
I have tried to do that with loot building instruction. So I think you're I think you're my kind of people

Scott Benner 54:15
like seven year old in my mind. So okay, so I also just realized I might be more people are gonna laugh because I don't think I knew this about myself. I think I'm more of a diabetes geek than I thought I was. Because when you said you could open the loop, and then see what it was thinking. That to me takes me back to back before CGM when I used to test on it all these wacko times that my endo would be like, Why did you test 45 minutes after she ate and I was like, Don't you want to know what's happening? And she was like, No, and I was like, No, I think we should know. You know, like, I'm gonna keep testing. She'd always be like, I don't understand how you're a one sees her like this. But you're showing me all these weird blood sugars that don't make sense. I'm like, because I'm tracking what her blood sugar is doing so I can make better decisions. I really think I really think that with six months with loop, I might have to have my head made larger, not for my ego, that one person that left the review, but for my knowledge of diabetes, because I really think this is going to just kick it into another stratosphere.

Katie DiSimone 55:14
It really, it's a truth serum, it really tells you a lot about your settings, your understanding how you conceptualize, reacting to things. For example, a lot of people as they're getting used to this are impatient with insulin, they'll say, I don't want to wait it out. And they'll rage Bolus or or they think the rage Bolus, and they're actually not even bold enough with insulin, you know, and they say, Oh, I'm so scared of going out, having the feedback from a loop constantly telling you, hey, here's what I would do. And here's oh, by the way, your meal absorbed 20 grams more than you initially told me it would be and lasted, it also tells you the time and took two hours longer to digest than you expected. That kind of information is so powerful to relieving the diabetes burden, because it's fine tuning your expectations. And when you change your expectations for going into it and say, Yeah, you know what, it's okay that this meal choose me as 65 I feel comfortable, something has helped me learn better.

Scott Benner 56:21
Okay, I'm so proud right now. And I don't know if you did that on purpose. Or if that was by mistake. Either way, I'm proud. You said bold with insulin, which is really the whole tagline for this podcast. It's that's my hashtag. It came from here, if you don't know that, I'm just thrilled that those words are somehow in your brain, which means it's getting out in the to the stratosphere. And if you did know that, I appreciate you listening.

Katie DiSimone 56:45
Well, I actually heard that from a podcast interview you had with T one Junebug because she's a good friend of mine for several years. And I saw her use that phrase and I thought yes, that rings true. People are scared to dynamically think they'll see the same blood sugar rise, the same blood sugar rise, the same blood sugar rise, and yet say but the label told me it should be 10 grams or my endo told me it should be this and, and stringing that along. And and being a more dynamic thinker. And being bold with the insulin taking the insulin you need for what you've seen over and over again, is really good dynamic thinking.

Scott Benner 57:29
Yeah, I appreciate that. I was just speaking with a mom last night. And I said to her, you have to I said, I know that. You know, I haven't given you any advice here because I don't give advice. I just pass on my own stories. But I told her I was like, I can give you this one piece of advice. I said, I would stop thinking about all the things that people have told you to do, and told you not to do and just apply a little more common sense to this. You know, like, like, stop overthinking it, your blood sugar's high, you need more insulin. That's kind of just I'm down to like, if I see something online, people are like, look at this graph, and I go and I type more insulin. And then I hit Enter, because I can't I can't explain it any more. We do it here enough. But sometimes I'm just like, how can you look at a 300 blood sugar and think I don't understand what's wrong, I know what to do. Of course, you go, what's wrong, you didn't use enough insulin. And so

Katie DiSimone 58:21
it's not going to be it's not going to be the same and it's not going to be perfect. My daughter gets nervous around certain situations and her blood sugar spikes. And Luke doesn't know that's coming. Nobody gave it an announced warning. Nobody gave me an announced warning or my daughter. And so there's ways that you can help correct that faster as well. You can still override and give more insulin and give a correction. There's a lot of information built into loop to help you with that decision making process if you choose to take that interactive Step. If you're the type of person that just says you know what? I'm happy. I'm happy with a little wider range. And I just want less cognitive burden of interacting with it today and or longterm. You can let Luke do that as well. It has all the information put in there that it will meet you at your comfort level and help you make the most of where you are. I'm gonna say

Scott Benner 59:17
something real quick. And then I'm gonna ask you a question. What I'm going to say first is for everybody listening who has come to count on the podcast, I just want you to know that even if I do this and stay with it, I think it's only going to enhance my ability to talk to those of you who aren't doing this. So don't worry about that. I think I want to ask, are you comfortable telling me what your daughter's a one C is on loop?

Katie DiSimone 59:38
Oh, yeah, totally. She started loop at 449 I think and again, we were low carb heavily intensively, lots of work, lots of communications, lots of texting, lots of less sleep. So we are working hard. She is now Got a five, six? What was her last 156? I think, and she is as high carb as they come has become a vegetarian. So we have no, no like low carb meals ever. And she is completely independently operating and bolusing and doing everything through loop. I have not told her how to split a Bolus in, I'm gonna say a year. She is completely handling all of that just by loop recommendations and putting it into loop. I hope I don't tear up, it has changed everything. I now have the space reclaimed for what used to be diabetes conversations I now hear about her friends at school, I hear about the things she wants to do I hear about going to the beach, and can I go on a date? And I hear the things that I'm supposed to be hearing and they're not laced with? Don't forget to bring diabetes into this conversation. I don't have to do that.

Scott Benner 1:01:04
Don't forget, did you I start too many sentences with Did you? Or you know, can you tell me or what does the say? There's, there's still listen, I'm gonna be honest with you. We don't talk about diabetes around here very much. Because we really are, we just have a rhythm. Like I don't know another way to put it. But at the same time, it still happens. And if it could be less, that'd be amazing. And if it's less for me than I imagined, it's going to be much less for a lot of other people. I have to say that this is this is the future that I always imagined, I always thought it was going to come more in like 2020 like writing that was my kind of estimation. And I was always happy with that because I thought well, that's still a couple of years before are no go away to college. So I'm okay with that. But just the idea that it could happen sooner.

Katie DiSimone 1:01:57
It's got me It's amazing. I'll give you an example. When my daughter goes to summer camp, we always talk well, do you bring lip? Do you not bring loop? And, you know, I realized that sending her to camp with a non FDA device puts a little bit of burden, an ask on those camp staffers. And, you know, so I'm cognizant of maybe we don't loop when we go to camp and certain camps even don't allow it. But our particular camp is supportive. And but it's always, it's always funny, she goes to camp because she doesn't want to feel different, right? She's got her her crew, her tribe. And she doesn't feel different around them. But she does feel different. She's perceives this if we talk about it in April, or may have going to camp using loop because she's worried none of her other friends will be using the loop. And so we have this conversation every summer for the last two summers about whether or not she's going to live there. And every summer, she goes into it telling me, Well, I'll probably take it off while I'm there. I'm taking it now. But I'll probably turn it off because I don't want to be different. And she never turns it off. And she comes back to the pickup station after two weeks away. And all of her friends are around her and I'm telling you it's like a little gaggle, there'll be five teenagers with her that I'll go. Katie, can you get us on loop too? You want to use it too? And so, you know, I kind of take that, as my bellwether of how good the system is, or isn't is if adults weren't involved and parents weren't involved, what would the kid decide to do? Because I think that's a really important aspect is the informed decision making process involving the kid and letting the kid be a part of that? And so when she comes back from camp, and there's five kids with are saying, Can you help us? We want to do that, too. I think it's a good sign that the system is well designed and helpful, as opposed to an extra burden that just isn't useful.

Scott Benner 1:03:52
That makes a lot of sense. Can I pick your brain about something else as a as Yeah, as a person who's obviously given a lot of their time and effort to the diabetes community? I think that overall that shows the your concern for people who you know, who have type one and people who you don't know who have type one, I feel similarly. I don't ever have this feel fear. But I know some people do that if you take away the idea of how to manage diabetes, that if the technology is not available, you'll be lost. And I don't talk about that here. Because I think it's silly to make somebody struggle and cry and be upset and exhausted just so they can understand how a Bolus works. I don't think you need to do that. I have dedicated this podcast to fast forwarding people through that whole process. But I'm now I'm projecting into the future. Right. I talking privately and have been for weeks and months with a mom of a little girl who is so newly diagnosed that she is honeymooning to the point where she doesn't need insulin some days. And it's really going on for a long time. And I'm imagining her right now. And I'm thinking I could put this on her. And she would never know all of the tragedy that I've lived through, and that so many other people have lived through, like figuring out diabetes. And is that a good thing? Obviously, it is. It seems like it is at the onset. But what would happen if that technology like if her insurance changed or something happened, it was just taken from her? Do you think that she'd be gobsmacked blindsided by what diabetes really is without the technology? Have you ever thought about that? Like, I'm just interested in your in your like off the top of your head thoughts?

Katie DiSimone 1:05:39
Oh, yeah, I think I think people would be if it disappeared from us. For us. Would it be impactful? Would we notice it absolutely. Give you an example. We switched to Omni pods because we were having problems with sites on NEOs and Medtronic. So one day during a particularly painful yet again, cannula failure kink kind of issue day. She had to turn off loop, we were just perfect storm CGM fails. Me Oh, failed, we were flying blind. And she had to give herself a shot for the first time in two and a half years almost. And I was away from home, she was home alone. And I said, Can you do it? And she's like, Yeah, yeah, I think so. And she did. And it was daunting, and all of that. But that said, you do what you got to do. And I don't believe in keeping the covers on the couches, and not using the things that are great in life, just because something might fail later.

Scott Benner 1:06:54
I don't, I don't like it when there's fear mongering around advancement. And and I think it happens a lot. I think when Dexcom first came out, there were people running around going, you're not going to understand your diabetes. And I think there are people that tell people, you have to have a do shots for a year before we give you a pump. I think all of that, and I'll bleep this out later. I think all of that is okay, I think that you need to understand how insulin works in your body, and then you're good. And it seems to me that this algorithm is going to understand how insulin works in my body. Now should I still understand it? I should but I but what I'm foreseeing in the future is, is that you're going to go on this and write on the screen, you're going to see what's happening. And you will learn how insulin works in your body without ever having to fumble around with the algorithm is not just going to keep your blood sugar where it wants to be where it wants it to be. It's going to teach you how it's doing it visually. Yeah, that's what I'm seeing here. So now you'd have to translate that back to a pump without a loop or injections, if you got stuck in that situation, but you wouldn't be starting from zero, you'd actually have a fairly fast forwarded understanding of it, you're gonna put this podcast out of typo, you're gonna need to hire me if I can't get downloads on this podcast anymore. Because your loop seriously a fluke puts my podcast out of business, Katie, I'm gonna be pissed.

Katie DiSimone 1:08:16
I tell you what, it really died. That's like a truth serum are the assumptions that people had about their diabetes understanding is

Scott Benner 1:08:24
wrong, guys. You're always wrong. Everybody, I'm sorry to cut you off. Everybody who sends me an email is like, I think this is what's happening. I'm like, No, that's not what's happening. Your Basil is wrong. You know, like, like, no one ever really knows. Because it's, it's, it's, it's this false idea. And there I had somebody on recently who said this thing that just struck me. He said, You know, if you put a pencil in your back pocket, and you rob a bank, pencils don't cause bank robbery. But But somebody thinks it does. somebody sees this cause and effect, and they just say, I saw this, then this happened. So that thing must have been the reason why and we make that mistake so often. And diabetes, it's not funny.

Katie DiSimone 1:09:00
It really it's such a true serum is that people get on when things are automated. That means it's using the same assumptions you put into it. And when those assumptions show, hey, you're trending high, or you're trending low, consistently, people are like, what, but these numbers were set in stone, i These were fine. I was doing fine. And what they don't realize is No, you weren't doing fine. You were you were taking a lot of manual actions to make it fine. Or you were adjusting in other ways that you hadn't realized. And so when it to two wrongs can make a right and diabetes, you can overlook things very easily by having two wrongs equaling a right. Yes,

Scott Benner 1:09:48
there are so many times that people are having a good outcome at 3pm. That's really just from mistake at noon and they have no idea. Yeah, it's really it really is. Once you see it It's I joke about that it's a little old of a reference. But once you see it, it's it's like at the end of the matrix when the bullets start moving for Neo, and he's just kind of like walking in between them and moving away like once you can see it, it's fascinating

Katie DiSimone 1:10:12
loop provides that visual, that visual interface to be able to see it. So one good example. So for example, let's take your correction factor or your insulin sensitivity. A lot of people have a wild guess at that, but they don't really know and they haven't tested it. When you see your blood sugar's on an automated system, kind of roller coastering, up, and then down and up, and then down, you're also probably gonna see what I called lightning bolts of Temp Basal. So you'll get a lot of Temp Basal action trying to correct a rising blood sugar and then suddenly, you'll turn low, and or not low, but you'll start heading down and then you'll come back up, and you kind of get on this oscillation of roller coaster. That's usually because your ISF is, needs to be higher number. So I don't know I'm avoiding using the word weak or strong because people have different impressions of what that word means in terms of where the actual number needs to go. But if you had put in, if you told loop, each unit of insulin will drop my blood sugar 50 points. And you start seeing that roller coaster pattern, that's a really good indication that your your value of 50 actually might need to be up near 70, or a different number higher than 50. Because you basically undersold insulin to loop, it's actually doing more than it expected. And so some of these things about loops, ability to inform you of your diabetes assumptions are really like strikingly obvious. As soon as you start using it, as you start seeing that you go Holy smokes.

Scott Benner 1:11:52
Okay, so I have a couple of just like, like fast paced questions here. So first day of a Dexcom sensor in the first few hours, I don't really lean on it for like, you know, I don't want to put a time on it. But until it's right, like until it's soaked in, it's really working. So do I just go into open loop during that time? Is that what yeah,

Katie DiSimone 1:12:10
you could? No, it's not what I do. But you could, my daughter basically usually ends up changing her sensor at night, which is, I think, the worst time to change a G six. And so the whole first night, we basically get a lot of false lows or compression lows. And what we have found is that basically, loop still does, okay, it doesn't. And in essence, what happens is that you get some higher Basal rates, you get some suspensions, and they all evened out over the course of the night to be okay.

Scott Benner 1:12:44
hammers out the kinks and gets it gets you Yes,

Katie DiSimone 1:12:47
yeah. And then when she wakes up in the morning, finally, the Dexcom is back on an even path, and everything's fine. So for the first 12, for us, it's you know, it will depend on the person, but for us, the first six hours of a new sensor are kind of jaggedy. If it's really far off, we can go into open loop mode, and it's no problem.

Scott Benner 1:13:09
Okay, what about different insolence? Do people see different or does it not like we use a pager? That's gonna be good?

Katie DiSimone 1:13:15
You send me up on that one. Yeah, actually, within loop, we have three different insulin models. So there's four, but three are based on the type of insulin and the user. So there's a rapid acting adult, which is like Novolog Humalog. For adults, there's one setting for children. And then there's another setting for fiasco. So and then each of those settings basically describe how the insulin curve works. If you after knowing your daughter and kind of looking at how things work, say, wow. On our particular insulin, we think it peaks at this amount of minutes, that's actually something you can customize within your loop to say it peaks at this time, we have numbers put in there that are based on the published data of how these things behave and clinical trials and all of the published data. But if you find that for you, your diabetes is different, you can actually tweak and customize some of those things.

Scott Benner 1:14:19
Okay, and so a lot of it's customized Like for instance, can I pick her target blood sugar?

Katie DiSimone 1:14:24
Oh 100% Awesome. That's

Scott Benner 1:14:26
the one thing I would just not like I don't I would I want to sleep more but not at the you know what I mean, not not to say that I don't know what the Medtronic artificial pancreas but it's like at 120 or 140 or something like a target up there. Like I couldn't do that. I wouldn't be able to make that decision.

Katie DiSimone 1:14:43
I'd say out of all of the feedback I consistently hear on the development of closed loop in the commercial market. That target setpoint is is the real critical piece for a lot of people. And on this one, you can set it anywhere you want. We have people setting At that are ultra low carburetors and have a single number target that they really aim for. And there's other people that are doing a much wider range and are. So yeah, it's totally up to you what you want to set it up.

Scott Benner 1:15:12
Okay, is it my so my last kind of nuts and bolts question is do I tell it when a new pumps going on? Like, how much does it care about how old the infusion set is?

Katie DiSimone 1:15:20
If you're on Omni pod, it keeps the theme, Standard Change cycle as Omni pod, it will alert you it's well at 72 hours. Omnipod tells you just pods done but at 80 hours, it really makes you change it and it says you're done done. Loop has the same things. And you can set a custom notification for when you want it to tell you hey, it's coming up.

Scott Benner 1:15:42
What about this? Here's another I said I wasn't gonna ask any more nuts and bolts questions. I have one more. What if a cannula like comes out a little bit? I'm getting some of my insulin but not all of my insulin? Does it know that? What's that? It's not seeing what it thinks it should be saying?

Katie DiSimone 1:15:57
That's a great question. And the answer is no, in a way is that basically, if it thinks you delivered a whole unit, but the cannula actually only managed to get half of that under your skin and absorbed, loops calculations will be a little off, it will think that you have more insulin than you do. And so what you can do is there's a couple of different options, you can open your loop, until that discrepancy wears off, and you get it all changed and figured out, you can open loop and just go back to normal pump therapy. Or you can enter in a fake carb, where you say, Hey, I'm going to eat five grams Bolus mean for these five grams. And basically you're tricking the algorithm to think your blood sugar will rise because you were eating. And so therefore, it will offset some of that it's a more advanced technique. And people kind of start using that in those situations once they become a little bit experienced. But that is an option as well to kind of say, Hey, I'm going to need extra insulin that you think is there. But wasn't there.

Scott Benner 1:17:03
We call that stuff ninja level. So yeah, okay, so All right, so here's what I'm gonna do it because we've been going at it for a while and I want to make this digestible for you. We're gonna stop, I'm going to say thank you. I'm going to ask you, after I get this back, when you come back on and talk with me after I've been using it for a little bit,

Katie DiSimone 1:17:20
I would love to, I think that would be great. And can I have an ask of you?

Scott Benner 1:17:24
I guess so. But I'm not taking my pants off.

Katie DiSimone 1:17:28
So that the ask is that I want to make this system better for everybody else. And make sure it goes there, you know, is able to incorporate all of these things like soliciting impact, feedback. And that job loop observational study is a really important part. And it's the best way that people have to pay this forward and provide meaningful impact. I would love it if people would take a look at the study and donate their data, it can all be done from home. It's super convenient. It's very fast and easy. And it provides important user information, especially from new users, or like just getting on the loop. You're asked questions about like, how did the setup go? How hard was it? Are you technical? Are you not technical? How do you view diabetes, all of that's going to paint this incredibly awesome mosaic of what kind of user experiences have been and just take the system into a better place.

Scott Benner 1:18:27
Okay, so when we've talked about it here, but the next time we talk, I'll give direct, you will be able to give direction instructions to people about how to donate their their data to that. That'd be great. Excellent. Okay, I don't want anybody to worry. I still understand how to be bold with insulin after a day and a half of looping. As a matter of fact, that loop, just like Katie said, is showing me things that I don't think I understood. But I'm starting to, and then I'll be back here to report to you. So whether you want to loop or not loop or lose skipped your Lu, or just keep doing what you're doing, or do what I've been doing for years, which might be what I'm doing again, I don't know how long we're gonna do this loop thing. We're trying it. I can't do a podcast of it don't understand looping. I mean, it's 2018 Wait, is it 2019 Wait, I mean, it's 2019. It is so late at night here. I'm out of my mind. I hope you found this episode interesting. And what Katie had to say intriguing. I certainly did. It got me off my butt to try looping. And as soon as I know what I think I'll report it back here. Huge thanks to the sponsors Dexcom real good foods, and dancing for diabetes. The links to everything you want to know about them are in the show notes of your podcast player or at juicebox podcast.com. But you can always go to dancing the number for diabetes.com Real good foods.com use the offer code juice box, or of course dexcom.com forward slash juice box. I'll see you next week.

Thank you so much for listening today. Please keep Katie and her family in your thoughts and prayers. I'll be back very soon with another episode of The Juicebox Podcast.