#1806 Spokane or Bust - Part 1
After a terrifying DKA diagnosis and life flight to Spokane, Cassie shares how her son’s type 1 began, the pressure to “not try too hard,” and navigating early control, burnout fears, and honeymoon shifts.
Companies that Support Juicebox
Key Takeaways
- Honeymoon Phase Challenges: As the "honeymoon" phase ends and the pancreas produces less insulin, diabetes management often feels like starting over as pump settings and carb ratios need frequent adjustments.
- Medical Professional Perspectives: Sometimes a doctor's pushback on tightly managed blood sugars (like an A1c in the 5s) comes from a desire to prevent caregiver burnout, rather than criticism of the management strategy itself.
- Diabetes is a Marathon: Successful management is about aiming for good outcomes over the long term without tying personal self-worth to every single blood sugar reading. Mistakes and unpredictable days will happen.
- Emergency Preparedness (Life Flight): If you live in an area where critical care requires air transport, an annual air medical transport membership (like Life Flight or Airlift Northwest) can save you thousands of dollars in an emergency.
- Recognizing DKA Symptoms: Excessive thirst, frequent urination, sudden bedwetting, extreme fatigue, paleness, and vomiting are classic signs of undiagnosed Type 1 Diabetes and potential Diabetic Ketoacidosis (DKA).
Resources Mentioned
- US Med: usmed.com/juicebox or call (888) 721-1514
- Eversense 365: eversensecgm.com/juicebox
- Tandem Mobi: tandemdiabetes.com/juicebox
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Touched by Type 1: touchedbytype1.org
- Life Flight Network: lifeflight.org
- Juice Box Podcast Small Sips: Go to juiceboxpodcast.com and click on "Series" in the menu.
- Wrong Way Recording: wrongwayrecording.com
Welcome & Sponsor Messages
Scott Benner Welcome back, friends. You are listening to the Juice Box podcast.
Cassie So my name is Cassie. I am a stay at home mom of three boys. They're 14, 12, and six, and my 12 year old is our type one diabetic.
Scott Benner Have you tried the small sip series? They're curated takeaways from the Juice Box podcast, voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com.
Scott Benner Click on the word series in the menu.
Scott Benner If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me.
Scott Benner If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Scott Benner Today's podcast is sponsored by US Med, usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more.
Scott Benner Usmed.com/juicebox or call (888) 721-1514. Today's episode is also sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox. The podcast is also sponsored today by Tandem Mobi, the impressively small insulin pump.
Scott Benner Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott Benner I just realized. I'm gonna record this.
Scott Benner We'll introduce you later. Okay?
Cassie Okay. Perfect.
The Creepy Neighbor with the Shears
Scott Benner So they have a row of bush as a hedge, and they I I'm gonna guess that in the time I've lived here, in the twenty five years that I've lived here, they've planted, chopped down, dug up, and replanted this row of hedges, I wanna say conservatively five times. So it's, like, 10 or 20. I don't know. They're not quite arborvitaes. They're nicer than that.
Scott Benner They plant them at about six feet high. They grow up to a certain level. They start to top them. They cap them. Like, they'll they'll cut them to keep them at a at a height.
Scott Benner And then eventually, one day, they just go out there. They cut them down into pieces, throw them away, dig up the stumps, and then replant the same exact bush again.
Cassie Do they just love the process?
Scott Benner I think it's it's gotta be quelling some sort of a mental illness for them. Like, I don't know I don't know
Cassie another way to put it. I that's a selling point though. Mature landscaping.
Scott Benner Well, guess what? It's been four times so far, and it's working on
Cassie it for a time.
Scott Benner It's working on it for a fifth time. So there's a lot of that. There's a lot of of planting, growing, tending to ripping down for no reason, replanting again. There's also and the reason this came up and, by the way, everybody, this is are we gonna say your name, Cassie?
Cassie Yes.
Scott Benner This is Cassie. We'll get to who she is in a second. She and I were talking before we started. But the reason I bring it up is because the older person that lives at the house and as I described to Cassie before I hit record, she has to be a 150 years old because I'm sure she was a 100 years old when I moved in here twenty five years ago. So, I mean, bent over, can't stand up straight anymore, doesn't look like she should be mobile, but still spends her entire summer on her hands and knees or bent at her waist, like folds herself in half to bend to the ground.
Scott Benner I mean, I'm impressed by her flexibility every day in my life with a pair of steel kitchen shears in her hand.
Cassie Oh my goodness.
Scott Benner Grabbing leaves, weeds, anything she doesn't like one at a time and snipping them off.
Cassie She must also do yoga.
Scott Benner I mean or her back is broken and it just doesn't matter because I'm not lying.
Cassie Could be.
Scott Benner Standing up straight, bent at the waist, hands on the ground. Clip, clip, clip, clip, clip. And then the the creepiest part and then you'll introduce yourself. The creepiest part is that there are times in the middle of the summer, sometimes as late at 03:00 in the morning where it's just dead silent outside and you have the windows open and you hear this.
Cassie Oh my goodness. Stop. She's out there at 03:00 in the morning?
Scott Benner Clipping with the Sears. And I have to tell you, I don't make fun of mental illness. I think it's terrible, and I don't know what's wrong. I have had situations where I've been face to face with her and she's been like, hello. How are you?
Scott Benner And I'm like, good. How are you? Do you not remember when you screamed and yelled at me six weeks ago? And then there's times where just for no reason, you'll just be pulling out of your driveway. I haven't seen her or laid eyes on her in months and, you know, you get to the end of the driveway.
Scott Benner Nice day. The windows are down. You put your hand up to wave and she just say, you fucking asshole. And I'm like, oh my god. What is happening?
Cassie Oh, dear.
Scott Benner Whoever buys this house, I imagine we'll have a landscaper come in and cut down, I'm guessing, 65 to 70% of what's planted on it because they they literally, it's like a walking garden. There's no actual space to be on
Cassie that. Oh, I see.
Scott Benner It's really crazy.
Cassie Is that where is that where the deer should go to die?
Scott Benner I mean, listen. If Snow White was over there right now having a full on relationship with seven smaller men, I wouldn't be surprised. It's a jungle forest across now here's the high side. I can't see their house. Like, I'm not kidding.
Cassie That's how much landscaping there is.
Scott Benner I am not kidding. I can stand at my front door, look across the street from my house, and I if I didn't know there was a house there, I wouldn't be able to prove it.
Cassie Oh, dear.
Scott Benner Yeah. Wow. Clink. Clink. The first time it happened, the kids were like, yo.
Scott Benner We're gonna die. There's a murderer outside. Hey. There is a guy with a hook outside. He's sharpening the hook.
Scott Benner He's coming for us. And then it took us a while to figure it out, but no kidding. It's her. And I'm not telling you this happens one time. Like, this happens.
Cassie Consistently. Yeah.
Scott Benner Yep. Yep. And then, you know, and and to your point earlier, which we won't say out loud because it had something to do with somebody you're related to. Her property don't look any different than mine does. Like like, it doesn't get any better or any worse or any different.
Cassie Right. Yeah. Yeah.
Scott Benner Yeah. It's awesome.
Meet Cassie: Navigating the Honeymoon Phase
Scott Benner Anyway, Cassie, do you have type one or does your kid have it? What's
Cassie going on? My kid has it. Yeah.
Scott Benner Awesome for you. Let's see. Let's let's learn about you for a second. Just introduce yourself just briefly.
Cassie So my name is Cassie. I am a stay at home mom of three boys. They're 14, 12, and six, and my 12 year old is our type one diabetic.
Scott Benner How long ago was he diagnosed?
Cassie He was diagnosed in July '24, so about eighteen months now.
Scott Benner Oh, it hasn't been that long at all.
Cassie No. It it feels like forever, but also not.
Scott Benner Tell me about that. What do you mean it feels like forever?
Cassie I just feel like we've settled into it enough that it just feels normal.
Scott Benner Okay.
Cassie It's almost like we don't really remember him not having it.
Scott Benner Wow.
Cassie Yeah. Which I find interesting. I don't know. I guess I just feel like I don't remember how easy it was before we had to do all the extra stuff. But then at the same time, it still does feel very new.
Cassie He's, like, in a prolonged honeymoon at this point, and so we're just now finally seeing it start to die off. It almost feels like we're learning all over again.
Scott Benner The honeymoon's dying off.
Cassie Yes.
Scott Benner Okay.
Cassie Yeah. Yep. Alright. So we'll have days where it is very obviously on the pancreas is helping, and then you go into, like, three or four days where it is not. And, like, ratios are not working.
Cassie Pump settings are not working. So this last several weeks, I feel like for us, it's just been starting over again. So
Scott Benner Is that feeling difficult, or are you able to adjust with it?
Cassie We're adjusting. It was a little difficult at first only because we've kept such good control. We managed to get his a one c down so far right off the bat.
Scott Benner Mhmm.
Cassie And that's kind of where my email came from was because I was basically told you're trying too hard. Like, you don't need to try this hard. And I was like, I don't know why you wouldn't want me to. Like, he's doing really well, and he's happy. So it was a little frustrating because it's just like, you don't wanna lose the progress, I guess.
Scott Benner Pick through that for a second though. Who told you you were trying too hard?
Cassie That was our endo.
Scott Benner Your endo.
Cassie And he's wonderful. We love him so much. I am so thankful to be in the practice that we're in. He's really great. I And think he was just kind of looking at it from a mental health standpoint, honestly.
Cassie Like, he didn't wanna see us burn out so quickly.
Scott Benner Were you going cuckoo?
Cassie I didn't feel like I was.
Scott Benner Do you think he thought you were?
Cassie Probably.
Scott Benner Is it because you spoke very quickly and your hair didn't look combed, or what was the level of concern do you think?
Cassie Well so I think the level of concern was coming in with so many questions and ideas. So several times I was told, you're kind of getting into the weeds there. You're getting a little bit out there.
Scott Benner What's the weeds? Give me an example of, like, a bridge too far for the endo.
Cassie Oh, gosh. At the time, we were kind of just looking at a one c in general. Like, I use your little calculator on your website a lot.
Scott Benner Yeah.
Cassie That's always on for us, by the way. If I check his ninety day average before we go in to the endo, his a one c always comes back exactly what the calculator says it's going to be.
Scott Benner You know, a a listener made that for me years ago.
Cassie It's awesome. Yeah. No. It's great. Gosh.
Cassie I wish I could remember what it was. I remember what office we were sitting in. So where we live, we actually travel three hours to go see our endo.
Scott Benner Oh my gosh.
Cassie Yeah. So they'll come down and do satellite clinics here.
Scott Benner Off a mountain? What do you mean come down?
Cassie Come down from the Northern Part of Washington. So I'm in Eastern Washington
Scott Benner Okay.
Cassie But Southeast Washington. So we're a pretty big community out here. It's called the Tri Cities. We have to go up to Spokane to go see our endo. So our hospital network, all of the endos here, they don't have them here anymore.
Cassie We had one that was about an hour and a half away. They didn't pay him enough, and the practice was overloaded. He was the only one. This is what I was told anyway. And so he ended up leaving.
Cassie So now everybody they told me that there are, like, 600 families down here that travel up to Spokane for care.
Scott Benner Jeez.
Cassie Yeah. It's crazy.
Scott Benner And so it's six hours round trip?
Cassie Yes.
Scott Benner It's a whole day.
Cassie It's a whole day. Yeah. It turns into a whole day. And if we do have to go up there, that's exactly what it is. We usually schedule the appointments earlier.
Cassie Him and I leave first thing in the morning. We get up there for the appointment, and then we basically just get back in the car and drive straight home.
Scott Benner But this appointment's so amazing it's worth it, or it's just the only game in town?
Cassie It's the only game in town unless I wanna go to Seattle, which is longer.
Scott Benner Okay.
Cassie Yeah. Yep. But I do think it is worth it. I also think it's worth it. And like I said, they do satellite clinics down here, so there are times that we can get in with the satellite clinic.
Cassie So they've got a little office space that they rent out. Like, two of the endos from the practice will come down and see people here.
Scott Benner Okay.
Cassie That's an option as well. Our last one was over Zoom because they had just seen him in the office. So they are pretty flexible with
Scott Benner us. Mhmm.
Cassie But I do remember sitting in the satellite clinic and him telling me, you're really getting into the weeds here. I feel like you're in the forest, and you're just really focused on this one tree.
Scott Benner You said, dude, we're in Spokane. Of course, we're in the forest. Calm down.
Cassie Yeah.
Scott Benner Yeah. What did you think? Did you think you were? Like, when he said that, were you like, no. I'm not.
Cassie No. That's exactly what I thought. I was like, no. I'm not. How is that possible?
Cassie And I think what happened was so he had been diagnosed in July, and then I think his a one c was, like, 12. And then we saw them again. Obviously, we had education that we had to do, so we traveled up there several times. We saw them again in October, and I think it was down to, like, 6.4.
Scott Benner Okay.
Cassie And then December, we saw them in the satellite clinic, and his a one c came back at 5.4.
Scott Benner Okay.
Cassie And I cried.
Scott Benner You're like, I did it. I did the thing. It happened.
Cassie I did it. I did the thing. I did the thing. Right? Yeah.
Cassie So he he wanted to talk about burnout, and I think you're trying too hard, and it's really not that serious. He is still healthy. You guys are doing a good job. Right?
Taking Management Personally vs Realistically
Scott Benner He didn't say congratulations. Well done. How did you accomplish this? No. And why are you saying he's a good doctor?
Scott Benner I don't understand. Are you Catholic? No. No? Because I I I just find sometimes Catholics like to say everybody's great before they say something bad about them.
Cassie No. He is really good.
Scott Benner But what makes him good? I'm gonna dig into this. What makes him good if when you, on your own, figured out how to get an a one c in the fives, he said, don't do that.
Cassie And I don't think it was that he didn't want us to do it. I think he just felt like we were trying too hard too fast.
Scott Benner Well, I don't know what that means either.
Cassie I know. I know.
Scott Benner Like, do you feel overwhelmed by it?
Cassie I don't. I mean, I think there were times where I did a little bit.
Scott Benner Yeah.
Cassie I would take it very personally. So
Scott Benner Okay. We're getting to it.
Cassie If, like, if I didn't nail something and his blood sugar was too high for too long, I would take it very personally, like I had failed.
Scott Benner How personally? Like, did you lash yourself in front of people?
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Scott Benner Did you lash yourself in front of people? Or
Cassie No. No? No. But I would just I would be so upset. They would just put me into a spiral
Scott Benner Okay.
Cassie And then it was just, like, bad mood central. And my husband's like, it's
Scott Benner Oh, you're married?
Cassie Yeah. I am married. Yeah. Yeah.
Scott Benner Has he ever said, why don't you calm down, Cassie?
Cassie Well, no. I mean, not in that way. But he has said, this isn't about you. You didn't mess up. You're doing the best that you can. Like, you have the information.
Cassie It just didn't work this time.
Scott Benner Okay.
Cassie It's not perfect every time. Like, diabetes isn't predictable in most senses, and so it's not like, just because it your pizza bolus worked this time doesn't mean it's gonna work next time.
Scott Benner I think it will.
Cassie But we have had that experience.
Scott Benner No. No. Of course. Of course.
Cassie Yeah. Like, where it has and then where it hasn't. But there are lots of things that we have figured out that we just nail every time, you know.
Scott Benner Yeah. Yeah. I am supremely aware of the idea that there's a difference between saying, like, this is how it could work. And if you understand these things, it probably will work this way most of the time, which is about what I believe about diabetes. Right?
Scott Benner And the feeling that some people take away from it that tells them that if I don't do it that way and it doesn't work every time that I'm failing, like, I don't have that feeling. So when I share with somebody, hey. You should give this a shot. I think if you understood this better, if you had your basil right, you know, maybe if you understood the fat impacts of this meal, maybe this would turn out better for you. I don't expect it when I'm saying that it's being heard by somebody who hears, and if it doesn't work out, you're an abject failure.
Scott Benner But at the same time, I don't know another way to relate the idea. If you and I were standing at a at the precipice of a cliff and I said, Cassie, listen. There's no other options here. We are gonna have to try to jump over the cliff here. And I said, do you run as hard as you can and jump as late as possible without falling because if not, you are gonna fall and hit your head and it's not gonna be pleasant.
Scott Benner If that was the truth, I don't think you'd want me to explain it to you by saying just give it your best shot and if you fall, it's okay.
Cassie Right.
Scott Benner At the same time, telling somebody that if you don't do this right, you might splat. Some people don't intersect well with that pressure. Mhmm. I don't know who's who and I certainly can't I don't wanna give like a milk toast presentation, but at the same time, I'm like I'm counting on all of you to be adults and go like, okay. I didn't get it the first time, but I could try again without beating yourselves up.
Scott Benner So I'm in a bad position is what I'm saying. And I'm wondering how you heard it. That's my question. Like, what did you hear coming from me and did that lead to you feeling like you failed or no?
Cassie No. I wouldn't say so.
Scott Benner Okay. Good. I don't want that. I don't want anybody to feel that way. I just know sometimes people do.
Cassie Yeah. No. No. If anything, like, I was telling my husband, he's at work. And so I had texted him.
Cassie I'm like, hey. The recording time got moved, so don't text me during that hour.
Scott Benner I'll be talking to Scott.
Cassie Right. I'm like, don't text me during that hour.
Scott Benner If you cut your hand off at work, hold your thought. Okay?
Cassie And he's like, hope you're not nervous. It's gonna be fine. And I was like, well, if anything, I just feel more emotional about it. And it's just because the podcast has helped so much.
Scott Benner About talking to me today?
Cassie Yeah. Oh. Yeah. Oh. And so just I think it was just kind of reviewing, like, where we've been, right, since diagnosis.
Cassie Sure. Sure. So and the things that we've accomplished. But, no, like, you asking that question, I always feel like you're speaking directly to us or any of the guests, like anybody that I've listened to. You know?
Cassie And so it's really nice because I've never felt you give information, but you'll be a failure if you don't make it. Like, I've never felt that way. Like, I've never gotten that.
Scott Benner Yeah. I I definitely see diabetes as a marathon, not a sprint.
Cassie Right. Right.
Scott Benner At the same time, I think that giving expectations there's nothing wrong with expectations. There's nothing wrong with being aspirational, but you also have to understand that it very well may be a process. And that process may go longer or shorter for some people. I've had people tell me directly, I listen to the pro tip series and a month later, my a one c was no success. Like, it just all made sense to me.
Scott Benner And I've had somebody tell me that I listened to the Pro Tip series, and I didn't pull together for two years after that. But once I did, I realized, oh, I got that information there.
Cassie Right.
Scott Benner And who cares? I mean I mean, I realized you want it to be faster, but as long as you get there, I don't think it matters what path you take.
Cassie Yeah. Yeah. Yeah. No. And that's nice to hear.
Cassie For me, I am an instant gratification kind of person. And so if we have a problem, then I wanna figure it out and just do it right every time.
Scott Benner Yeah. We'll keep you out of the casino.
Cassie Right.
Scott Benner So you don't get all caught up in that, the slot machines there.
Cassie Yeah. Yep.
The Lead-up to DKA
Scott Benner I'm sorry. So he let's find out how he's diagnosed. What was, led up to that, and was there any reason for you to think it might I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using US Med.
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Cassie No. So we didn't even really know what type one diabetes was. I feel like that's a a lot of people.
Scott Benner Well, you live in the woods.
Cassie Yeah. And I didn't like, we didn't even know anybody that had a type one kid.
Scott Benner Mhmm.
Cassie I didn't even know that we had them at our school, and there were, like, five.
Scott Benner We had them. I like the way you said that.
Cassie We didn't even know we had them.
Scott Benner The place was littered with them, Scott, and I didn't even know it.
Cassie They were everywhere. No. So he was when was this? The end of his fourth grade year? And looking back now, we can see symptoms starting like that last week of school.
Cassie Mhmm. And I remember him saying to me, can you please remember to fill my water bottle today? I have been so thirsty, and I hate having to go inside to fill it because he was outside in a portable. So he'd have to get a pass, and then he'd to walk to the main building Mhmm. Fill his bottle, come back out.
Cassie And I'm like, oh, yeah. Absolutely. I had no idea how much water he was drinking at school. So that was, like, the June. Over the next couple of weeks, he was starting to look thinner.
Cassie He was really pale. He was using the bathroom more often, drinking tons of water. Mhmm. And so, like, the week right before he went into DKA, I remember him waking me up like he'd gotten in our freezer, and he was getting out ice in the middle of the night. And I was like, I don't understand what is going on with this kid.
Cassie Why does he need ice? It's not even that hot yet, But he just was so thirsty.
Scott Benner Yeah.
Cassie And so he had finally wet the bed, and he was so embarrassed. Yeah. And I was like, well, bud, I don't know. He goes, mom, I just don't feel right. He had fallen asleep, like, middle of the day, just sitting up in his chair.
Cassie He'd fallen asleep. Mhmm. And he's like, I just don't feel right. I'm not sure what's wrong with me. And he's like, and the bedwetting is weird.
Cassie And I was like, yeah. For sure, bud. I mean, I don't know.
Scott Benner Yeah. We're all in line with that one, brother.
Cassie Yeah. For sure. Like, at ten, that's weird. I And was like, well, if it continues, I'm gonna have to take you to the doctor. We're gonna have to figure something out.
Cassie And he goes, no. I'd really like it if you'd make me a doctor's appointment. Can we go on Monday?
Scott Benner Oh, wow.
Cassie Yeah. And I was like, sure. Yeah. We can go on Monday. That's fine.
Cassie And this was probably Thursday.
Scott Benner Yeah. So you were like, let's see if we need to go to the doctor. And he was like, no. We should go to the doctor. Yeah.
Scott Benner I'm in trouble. He knew he was in trouble.
Cassie Yeah. Which is interesting because he doesn't want to go there. Right? And so I just thought it was interesting he was so agreeable. And I'm like, okay.
Cassie But yeah. No. We can do that. And I said, well, we don't have a pediatrician right now, but I can take him to urgent care or something. And he's like, okay.
Cassie We just kinda let it play out. And, again, the next day, he was feeling worse. We decided we were going to travel to another town to go to a little museum. They were doing a World War two reenactment thing. Our oldest is way into that stuff.
Cassie And so we were gonna go. He was really nauseous. And so he's, like, in the bathroom dry eating, but also his stomach is super upset. So he doesn't know if he needs to go to the bathroom just chugging water. And so I was going to stay home, and my husband was gonna take the other two boys.
Cassie And he's like, no. I don't wanna miss out on the family day. I'm just gonna push through it. So we slept on the hour car ride in the car. We drug him all over at this museum.
Cassie It was outdoors. It was, like, 90 degrees. And he's begging for water. I forgot to bring my water cup in. And I remember being so irritated with him.
Cassie I'm like, I don't understand what your problem is. Like, now we're gonna have to go all the way back out to the car. It's this long walk. And the poor kid, like, looking back at pictures, he's just suffering.
Scott Benner Yeah.
Cassie You know, you just feel terrible. We go to a restaurant to eat after that. He orders food he can't eat, but he chugged three Cokes Mhmm. And then fell asleep in the booth.
Scott Benner In the booth? Yes. I got a little sleepy recording the podcast the other day. Don't tell anybody. My iron's a little low.
Scott Benner And I had to sit up straight. I was talking to somebody. She was really great. And I I hope nobody hears it, like, thinks they know where it is.
Cassie You're, like, nodding off.
Scott Benner My farting's, like, back down to seven. I'll talk about another episode. She's talking. I think her voice was just very relaxing.
Cassie Oh, yeah. And I
Scott Benner was like, I got way ahead of that. I was like, oh. I just sat straight up, like, my hands on the desk. Was like, stay here. But to fall asleep in the booth at a restaurant?
Cassie Yeah.
Scott Benner Yeah. I mean, when that happened, do you look at the do you bring the boy with you to the day out, the husband? Was he there?
Cassie Oh, yeah. He was there.
Scott Benner You look at him and go, hey. This one's dying.
Cassie Yeah. We're like, oh, man. It was crazy. And so then the next day, it's Sunday, he just, like, napped on and off all day. We go to grandma's for dinner, and then the vomiting starts.
Scott Benner Okay.
Cassie He doesn't wanna eat dinner. He doesn't have an appetite. He's laying on the sofa, and then he pukes on our floor. And I'm like
Scott Benner Thanks for having us over.
Cassie Awesome. Sorry, grandma. Yeah. So she's like, oh my gosh. You poor thing.
Cassie I'm so sorry. And so it just was fluids. Well, it just continued, like, hourly. So I had been up with him all night long. I left our bedroom door open, so he was on the couch.
Cassie He'd call for me if he needed help or whatever. And so I'm out there rubbing his back. So finally, at, like, 08:30, I get out of bed. I was so tired. And he's like, mom, I just feel really bad.
Cassie I need you. And I was like, okay. So I get up. I go out there, and I could see his spine through his pajamas.
Scott Benner Oh my gosh.
Cassie And I was like, okay. And he's already really small as it is. He's in, like, the twelfth percentile. So he's very short, very thin, which all of those things he hates. And so it was just very obvious he was ill.
Cassie So I called my husband out, and I'm like, hey. I need you to come look at him and tell me what you think. Mhmm. He was so pale. His cheeks were almost like this mottled purple.
Cassie Yeah. He just did not look right. And so my husband comes out and he goes, oh my god. We have to take him to the hospital right now. There is something seriously wrong.
Scott Benner Right.
Cassie And I was like, what? And he's like, you have to get clothes on. We need to go now.
Scott Benner What's your husband do for a living?
Cassie He's a police officer.
Scott Benner Okay. And, and you are stay at home, but did you go to school or have any background or anything prior to that?
Cassie Prior. I didn't go to school. I went straight into dispatching, 911 dispatching. That's how we met.
Scott Benner Oh, okay.
Cassie Yeah. So I did that for ten years. And then after we had the first two, then I stayed home. So
Scott Benner He's not the only person who's ever been on the podcast to say that.
Cassie Oh, really?
Scott Benner I was a dispatcher, and I met a cop that way.
Cassie Oh, yeah. I mean, I yeah.
Scott Benner Is that, like, Tinder for cops? The 911?
Cassie I I don't know. I don't know. They would come in on their lunch breaks. We were in a really small community, so there weren't a lot of them on. So there'd be, two dispatchers and then,
Scott Benner like Yeah.
Cassie Two from his agency and then two from another agency.
Scott Benner You're getting to a certain age. His eyes are both pointing in the same direction. Seems like a good bet, that kind of thing.
Cassie I was 24. He's older. He was 31.
Scott Benner Oh.
Cassie Yeah. So, no, we would just like, everybody would kinda have lunch together.
Scott Benner Right.
Cassie And then eventually, he just was like, hey. Do you wanna go?
Scott Benner Hey. Would you like it if I ruined your life? Would you like me to ruin your life? Right.
Cassie And I was like I think I can.
Scott Benner It comes with a house. What do you think? Yeah. I was like,
Cassie yeah. Let's do that. And now here we are eighteen years later.
Scott Benner That's crazy. How'd you like me to give you three kids and something to clean?
Cassie Yeah. Exactly.
Scott Benner You're gonna love it.
Cassie And I'm not very good at it, Scott.
Scott Benner Yeah. I'm not very good at it.
Cassie The house cleaning. I'm just the worst housekeeper.
Scott Benner Sucker. Yeah.
Cassie Yeah. Exactly. Thanks for the kids. Sorry about the dirty house.
Scott Benner Yeah. There were better options. I I just I didn't wanna say it at the time.
The Diagnosis Unfolds
Scott Benner So you go off to the hospital right then and there. Is that Friday? Because you said Thursday, went to the museum. Was that Friday the or is that Sunday?
Cassie So, like, Thursday was when he told me he wanted to go to the doctor.
Scott Benner Okay.
Cassie This is now Monday morning.
Scott Benner How come you didn't go to the doctor Monday? You promised him Monday.
Cassie We did to the ER.
Scott Benner Did you have an appointment at the doctor later in that day?
Cassie No. We didn't. I was just gonna take him into urgent care.
Scott Benner Oh. That's Oh, right. You don't have a pedi
Cassie We don't have a pediatrician. We still don't. And that's a whole Wait.
Scott Benner Why do you not have a pedi
Cassie The area that we live in, that's a whole another story. I mean, it's just so hard to even find one.
Scott Benner Cassie, clean the house and get the kids a pediatrician. Okay?
Cassie Yeah. Exactly. I know. Yeah. So he wraps them up in a blanket.
Scott Benner Right.
Cassie And we basically go down there in, you know, sweatpants. Right? The ER is, like, six blocks from us. It's super close. So I go in first because he's gonna carry them inside.
Cassie At this point, here's the really weird thing, and I don't we see this differently. My husband's father is remarried. He has a granddaughter from that wife who has type one. So we no blood relation at all whatsoever.
Scott Benner Yeah. I got it.
Cassie She'd only been diagnosed about eighteen months at this time.
Scott Benner Okay.
Cassie We had literally just discussed type one diabetes at dinner at grandma's house on Sunday, just the day before. Right? So he is great at listening. My son is. He's great at listening.
Cassie So I'm sure he was eavesdropping on the conversation. And we're like, wow. That's so crazy. Like, we've never met a child with type one diabetes. I bet that's so hard.
Cassie Like, I don't even know what that looks like. So as we're taking him out to the car to go to the hospital, My husband's like, okay, bud. We you know, something's wrong. We're gonna take you. I swear, he asked, do I have diabetes?
Cassie Oh. My husband's like, no. I think he said, do I have a serious disease? And I'm like, well, I don't know. It could be one or the other.
Cassie I heard diabetes. And I was like, no, bud. Of course, you don't have diabetes. No. That's not even a thing.
Cassie Like, they're gonna take care of you. Mhmm. So we get down to the ER. I go in first, and I let them know this is what he's here for. She gets up from the desk and, like, runs into triage and grabs the nurse and says, this little boy is coming in.
Cassie You need to come see him right now. And I'm like, oh my god. What is happening?
Scott Benner That's the lady at the desk, by the way. She's might maybe not even a nurse. Right?
Cassie Right.
Scott Benner Yeah.
Cassie Yeah. Yes. And so she comes out, and she's like, just come right in here, and she brings us straight into triage. My husband sits him in a chair. At this point, he can't keep his eyes open.
Cassie His head's rolled over to the side. She wants to get height and weight, and I'm like, this is gonna be impossible. We can't even get him to stand up. And she goes, okay. Listen.
Cassie I'm not diagnosing him, but I've worked in pedagogists long enough to know that this is new onset type one diabetes. So just be prepared. And I was like, I literally just told him he didn't have diabetes.
Scott Benner It was ten minutes ago. I am also not great at keeping the house. Like, let's not pile these things up right now. Okay? I think people are looking at me.
Cassie I don't even know what this means. I know. It was so crazy. It was so crazy.
Scott Benner I thought you were gonna say you thought you jinxed him by talking about it the week before.
Cassie Yeah. I
Scott Benner Because I'm not superstitious. Well, you wanna know something? I've never said this in the podcast before. I am not superstitious. My wife, I don't think is either.
Scott Benner Although, I think she might believe in ghosts. So it's who knows? But Arden's diagnosed in August, couple weeks in August. And for our anniversary, which is the August, Kelly and I went to like a nice restaurant, a place we had never been before. A place where they call the food stuff that you don't really know what it means, you know?
Cassie Sure.
Scott Benner So we ordered a few appetizers and we ordered something called sweet bread. I think thinking it was bread, but it's not. Do you know what sweet bread is?
Cassie I don't.
Scott Benner It's pancreas. What? Yeah. And there was, like, a half a minute where I was like, did we, like, put bad mojo out into the world or something? Like, we steal the pancreas from an animal and then nature came and stole one from us?
Scott Benner Like, do you know what I mean? Yeah. So Yeah. I don't really think that, but I'm not gonna lie to you. There was, like, a half a second where I was like, oh, I don't like the optics of this.
Cassie Yeah.
Scott Benner Yeah. So, anyway, you don't know sweet bread?
Cassie No.
Scott Benner Yeah. It's what it is. How to prepare and cook sweet bread preparations.
Cassie Craziest thing I've done is, like, beef tongue or bone marrow. That's about it.
Scott Benner Oh, I'm with you on that's weird. Sweet bread meat from the thymus and pancreas of cattle is prepared with this easy recipe for tender and tasty nuggets coated in flour then fried. That's allrecipes.com in case you wanna go check it Oh. So when you started talking about that, I was like, I wonder if they think they, like, brought it into existence by talking about it. Thank God you don't think that.
Scott Benner Okay. Alright.
Cassie No. Not at all.
Scott Benner They clearly saved the kid. That's nice. What was his a one c? What was his blood sugar? Do you know?
Cassie I wish I knew what his blood sugar was when we got there. I don't think they ever told us. If they did, I didn't comprehend it. His a one c was 12, though.
Scott Benner Oh, wow.
Cassie Yeah. It was 12. Yeah. So they got him back there, and he basically just went to sleep. And then that was probably, oh gosh, I don't know, sometime in the morning.
Cassie Yeah. He didn't really wake up again until, like, 03:00 in the morning, like, 3AM that
Scott Benner night. DK, obviously?
Cassie DK. Yeah. Yeah. Yeah. So he was in DK.
Cassie They called our local hospital that has, like, a small PICU. Mhmm. They asked him, well, do you want him? And they were like, no. Wait.
Cassie We have an endocrinologist on staff. We don't want him. You need to send him away. So they told us to choose Seattle or Spokane. We went to Spokane.
Scott Benner Up the mountain. That's right.
Cassie Up the mountain. Yeah. And so but they life flighted him up there.
Scott Benner Wow.
Life Flight and Hospital Experience
Cassie And I think part of why I didn't some of that information I didn't get was because a nurse had come in. So because of my husband's job, he knows the ER doctors and nurses. So they knew him when we came in. So they were very generous with us with information. So they were like, hey.
Cassie He's gotta fly. And if you don't have life flight insurance, get it now, or it's going to be very expensive. Oh. He just needs to have it before the time of the flight. So I was immediately on the phone getting Life Flight insurance.
Cassie It's, like, $65.
Scott Benner Does the insurance company go, wait. Why? Why do you want why do you want it right now? I know. Yeah.
Cassie And it you just get it through them. So what happens is if you buy the insurance membership through Life Flight, then they bill your insurance. Your insurance pays their portion, and then they just write off the rest of the bill.
Scott Benner The whole world's a scam, Cassie. I
Cassie just I know.
Scott Benner I just wanna say that.
Cassie But guess what? Yeah. It saved us a lot of money. I would have $10. The whole bill was, like, 65.
Scott Benner Oh, is that a thing you think that's not just a Washington thing. Right? Like, you should be able to, like boy, I I that's hard to preplan for, but that's not a bad thing to have in that situation.
Cassie No. It's not. And I think the membership's gone up to 85. It's like an annual thing that you pay, and then you just put your whole family on it. So anybody who lives in your household can be on your Life Flight membership.
Cassie I think it's a great thing to have. A lot of people I didn't realize how many people actually had it.
Scott Benner AIRMED care? Is that what it's called? Network? Global
Cassie Well, it just it depends because, like, we have both in the state, we have both Life Flight and we have Airlift Northwest. So ours is through Airlift Northwest.
Scott Benner Okay.
Cassie Yeah. So it just depends on the the provider. So you would have to kinda check into, like, if you were gonna look into that.
Scott Benner Oh, there's a number of them. Yeah. There's a number of them. Life Flight Network, lifeflight.org. Mhmm.
Scott Benner I'm just gonna go to lifeflight.org just so I can have it. Air Medical, $85, annual membership from Lifeflight. FireMed Ground, annual membership from FireMed Ground. Air plus FireMed Ground. This is, like, less than $200 for all this.
Scott Benner Mhmm. And there is something about Oregon here. Oregon Air Transport, Montana, Washington, Idaho, Hawaii. This is probably a bigger deal in places where stuff's more spread out, I guess.
Cassie Right. Yeah. Exactly.
Scott Benner Because you can fall out my front door and go to four
Cassie hospitals. Hospitals. Right. Right.
Scott Benner Yeah. Yeah.
Cassie Yeah. Yeah. We've got them here. I mean, our community is pretty big. Yeah. It's really weird.
Cassie Like, we're the size of a big city, but it's just a gigantic small town. Mhmm. So we just don't have a lot of the amenities that some of the other areas have.
Scott Benner What?
Cassie Yeah. So he was flown up there. I was supposed to be able to go with him. So I ran home to pack a bag because, like I said, we're only six blocks away. And then when I get back, then my husband breaks it to me.
Cassie Oh, yeah. You don't get to fly with him. You have to drive up behind him. Yeah. Because they have a training nurse on, and the training nurse is in your seat.
Cassie And I was like, that's rude.
Scott Benner It's okay. We'll meet you there. Did you and your husband drive together?
Cassie No. So he stayed here with the other two boys, and I went up. And so I think he landed up there around two in the afternoon. I was up there by thirty, 06:00 because I ended up coming home and showering. I was like, well, at least I I can at least do that for myself.
Cassie I'll shower.
Scott Benner Did you think he was in, like, mortal danger, or did you not have that feeling?
Cassie No. I didn't. We thought he had a stomach bug.
Scott Benner Wait. Even when they're life flighting him and they're telling you diabetes, you're not believing it? Or did you mean you thought he had a stomach bug prior to going to the hospital?
Cassie I guess I thought we thought he had a stomach bug going to the hospital.
Scott Benner Okay.
Cassie I didn't think he was in mortal danger, but I didn't I guess I just didn't understand what it was. Mhmm. So then he's up there, and he's he's in the PICU. And, thankfully, he was only there overnight. I mean, a lot of kids stay a lot longer than him.
Cassie He recovered very quickly.
Scott Benner That's good.
Cassie So he was admitted Monday. He was released Tuesday. They allowed us to go home Tuesday evening.
Scott Benner Okay. Did they fly him back or you drive?
Cassie No. We drove back.
Scott Benner Okay. Yeah. Did you shave your legs in the shower?
Cassie I did not.
Scott Benner Good. I think that's fine though. I think if you told me you shaved your legs, I'd be like, this lady wasn't really grasping the situation.
Cassie Nope. Nope. I sure did not. Okay. I did not.
Scott Benner I'm okay with that then, I guess.
Cassie Yep. No. I just went home and then I just changed into clean clothes. But then, course, by the time I got to the hospital, like, I was so sweaty anyway. I'm like, it doesn't even matter.
Scott Benner What's the point of all this?
Cassie What was the point of that anyway?
Scott Benner Do you have that feeling like I should prep myself before I go to the hospital? The shower weirds me out a little bit, Cassie. That's why I'm asking.
Cassie No. I just like, I had it was like the stress sweat thing. So I felt like I'd already slept overnight. Yeah. I was in pajamas, essentially.
Cassie I felt so gross. I'm like, nobody's gonna want to sit next to this person in a hospital room. Mhmm. Like, I need to at least be kind.
Scott Benner Being polite. Yeah. Yeah.
Cassie Yeah. And, like, just at least clean my body before I go. No. That's that's that was it. That was I just did not wanna smell sweaty.
Scott Benner My father-in-law has passed on now, but I'll tell this story real quickly. He he had a heart attack. I think it's the only heart attack he ever had, but he had a heart attack. He's having a heart attack. His fingers were going numb from the heart attack.
Scott Benner Like, he put Neosporin on his fingers. That was what he did there. And then when he realized he probably had to go to the hospital, he would not let my mother-in-law take him to the hospital before he showered because Oh, no. He doesn't leave the house without showering.
Cassie I see.
Scott Benner So I didn't know if it was that level of crazy or if it was something. No. Okay. You were just dirty. I gotcha.
Scott Benner Okay. And
Cassie really, I mean, I was looking at it as, well, he's already without me. So taking an extra ten minutes really isn't going to make that big of a difference.
Scott Benner Plus you have two other kids if something happens to them.
Cassie Yeah. And and, of course, they didn't grasp the situation either. So it's like as soon as I walk back in the door
Scott Benner It all resets for them a little bit. Right? They're like, you're back.
Cassie Yeah. And they just don't get it. And they're like, well, where is he? And I'm like, well, you know, he's left. And, of course, the helicopter flies right over our house as it leaves.
Scott Benner Really? Oh, you said it was close. That's right. Yeah.
Cassie Yeah. So their flight path is right over the top of the house. So we see them come and go. Sometimes it's, like, five times a day, and sometimes it's not. And so, like, I had texted our oldest.
Cassie I'm like, hey. Your brother's helicopter's leaving if you wanna look. Right? But then, of course, I walk in the house, and he's like, hey. So, like, can we go to the Lego store today?
Cassie And I'm like, okay. Your brother I'm trying to be as nice as possible here. Now we can understand. Your brother has been taken in a helicopter to a hospital in Spokane because he's very, very, very ill. We cannot go to the LEGO store today.
Cassie We can't. And he's like, oh, wow. Gosh. Well, like, are you gonna be home tonight? And I'm like, no.
Scott Benner Because I need that Thanos glove pretty badly.
Cassie So I'm like, no. We're not gonna be home tonight. Your dad will be home tonight, but I'm not gonna be home tonight.
Scott Benner Right.
Cassie So he stayed home. We could have asked grandma to stay with the kids, but it just felt so confusing for them that he decided it would be fine if he stayed, and then he did drive up the next day. So he was up to us in the morning. Mhmm. We actually started education.
Cassie They had come in right about 09:00, and we were already sitting down with a diabetic educator. So we actually were on speakerphone, and so my husband's listening while he's driving up our through the first education session.
The End of Part One
Scott Benner Yeah. How did you find them? How was the in hospital education for you?
Cassie It was great.
Scott Benner Good.
Cassie It was great. It was like, it was so simple, but a lot of the education that they use gosh. I wanna say it came from a children's hospital in Arizona was the like, they had some YouTube videos that they had shown us that explained, like, what is a pancreas? How does it work? How does insulin work?
Cassie How does blood sugar work? All these things. And so you watch these little clips as you went through the education, and it just felt so basic that it was easy to understand. I had started working through that overnight while he was sleeping. And then, you know, you're reading about insulin, and you have to give insulin when they're eating and you know?
Cassie So when they finally come in, he finally wakes up. He's hungry, and it's probably I don't know. I think they let him eat at, like, 04:30 in the morning. And she's like, okay. Well, we're gonna we're gonna give, the insulin.
Cassie This is the carb ratio that the doctor has set. And, of course, by the time I got there, the doctor had been in, but I missed him. So I didn't get to see them till the next morning. So it hadn't really been fully explained. So then she's going to give him his first shot of Humalog.
Cassie And I was like, okay. So how long do we have to do this for? And she goes, oh, have you not seen the doctor yet? And I was like, no. I didn't get here until, like, 05:30.
Cassie And she goes, yeah. Okay. So he has to do this for the rest of his life. And I was like, okay.
Scott Benner You didn't know that at that moment.
Cassie I at that moment, I didn't know that. Even from reading the literature, I hadn't grasped that yet. Mhmm. Yeah. So
Scott Benner Wow. That's really a lot. Do you know what I mean? Like, just a ton to be dropped on somebody all at once.
Cassie It was yeah. It is a lot. It's a lot.
Scott Benner And how do you feel like you made out in the weeks after? Like and I'm talking about the first month or so, you've got the information that the hospital gave you. You're coming online from not understanding diabetes at all to your new understanding? Like, what was the first bit of it like? When did you realize that you needed to go find more information?
Scott Benner This episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's gonna be the next episode in your feed.
Scott Benner Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care.
Scott Benner I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system.
Scott Benner This episode of the Juice Box podcast was sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514.
Scott Benner Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com.
Scott Benner Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversense cgm.com/juicebox. Beautiful silicone that they use.
Scott Benner It changes every day.
Scott Benner It keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better.
Scott Benner Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.
Scott Benner If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple Podcasts, please do that now.
Scott Benner Seriously, just to hit follow or subscribe will really help the show.
Scott Benner If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend.
Scott Benner And if you leave a five star review, oh, I'll probably send you a Christmas card.
Scott Benner Would you like a Christmas card?
Scott Benner How would you like to share a type one diabetes getaway like no other? Join me on Juice Cruise twenty twenty six. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation.
Scott Benner It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea.
Scott Benner There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond. Your kids can be supervised, there's teen programs so everyone gets time to recharge. Not just the the kids going on vacation, but maybe you get the kickback a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on Juice Cruise twenty twenty six. Please come with me.
Scott Benner You're going to have a terrific time. You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Links in the show notes.
Scott Benner Links at juiceboxpodcast.com. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
#1805 Keep It Cute
Diagnosed at 13 during a routine physical, Sara shares how confidence, tech, and a determined mom helped her thrive with type 1—managing injections, school, sleepovers, and teen life without missing a beat.
Companies that Support Juicebox
Key Takeaways
- Early Detection is a Blessing: Sarah was diagnosed with Type 1 diabetes at age 13 during a routine pediatrician visit with zero symptoms, allowing her family to intervene early and implement life-changing technology like the Dexcom right away.
- The MDI Choice: Despite the popularity of insulin pumps, Sarah successfully manages her diabetes with Multiple Daily Injections (MDI) using Fiasp and Tresiba because she prefers not to have extra devices attached to her body.
- Flexible Diets Over Restriction: Initial severe carb restrictions (like 30 carbs per meal) can lead to frustration and potential eating dysfunction; using proper insulin coverage for a normal diet is much more sustainable for a teenager.
- School Independence: To avoid missing critical instructional time and maintain privacy, Matilde waived mandatory school nursing services, empowering Sarah to manage her diabetes via text message check-ins.
- Parental Advocacy: Successfully navigating T1D requires parents to actively self-educate, seek out community support (like the Juice Box Podcast), and advocate for their child's normalcy.
Resources Mentioned
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, type one diabetes" on Facebook
- Integrated Diabetes Services: Consulting resource utilized by the family (Gary Scheiner / Tavia).
- Wrong Way Recording: wrongwayrecording.com
Welcome and Introductions
Scott Benner Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
Sarah Hi, everyone. My name's Sarah, and I'm a junior in high school.
Matilde This is her mother. I'm Matilde Fiddler, and I'm so grateful to be on the podcast with you today, Scott.
Scott Benner How would you like to share a type one diabetes getaway like no other? Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond. Your kids can be supervised, there's teen programs so everyone gets time to recharge. Not just the the kids going on vacation, but maybe you get to kick back a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on Juice Cruise twenty twenty six. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Link's in the show notes. Link's at juiceboxpodcast.com.
Scott Benner If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box Podcast, type one diabetes on Facebook.
Scott Benner Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Scott Benner The episode you're about to listen to was sponsored by Touched by Type one. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touchedbytype1.org.
Scott Benner Today's episode is also sponsored by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott Benner The podcast is also sponsored today by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox.
Sarah Hi, everyone. My name's Sarah, and I'm a junior in high school.
Scott Benner And somebody else is with us. Who else is here?
Matilde This is her mother. I'm Matilde Fiddler. I'm a Miami native, and I'm so grateful to be on the podcast with you today, Scott.
Scott Benner Matilde, did you make Sarah come on or did she want to?
Sarah I actually asked to come on.
Scott Benner Okay. Cool. Alright. Well, let's figure out why all this is happening. Who should we talk to first? Well, who has diabetes? I do. Sarah does. How old how old were you when you were diagnosed?
Sarah I was 13 when I was diagnosed. I was going into the summer of, I was in my summer going into eighth grade and, yeah, that's when I was diagnosed.
Scott Benner And now you're a junior? Yes. Okay. How would you say it's going when you think about your diabetes? Like, what's where do you think you're at?
Sarah I think I'm very controlled. I also put a lot of hard work to control my numbers, but I'm really lucky because I haven't had any other health complications come out of it. And overall, I'd say I'm pretty stable and I'm able to, like, live the life that I lived before being diagnosed.
The Diagnosis Story
Scott Benner Yeah. Okay. What do you remember about being diagnosed, mom? Like, how did it come on? What what what did you see first?
Matilde What happened was I took the kids because I have another daughter. So both of my daughters, I my other daughter is 14 and Sarah's 16 right now. I took them to the annual visit at the pediatrician, and it happened to be that that day, we were seeing a new pediatrician. And my daughter did the annual pee pee in the cup, and she came back, and she goes, your daughter no. She goes to me, let me do a finger stick. She did the finger stick, and she said immediately, your daughter has diabetes. And I said, what the fuck are you talking about? Like, shocked. Yeah. My daughter had never had one simp. Her blood sugar at that visit was two forty.
Scott Benner Okay.
Matilde She had had a bagel and, you know, prior to the going to the doctor. The reason I had moved that pediatric visit to that day is because both of my daughters were leaving to sleep away camp for three weeks in three days.
Scott Benner Sarah, did you go? No. I did not end up going. Okay. Wait. Do you remember that moment the way your mom remembers it?
Sarah I remember the same thing.
Scott Benner Yeah. Do you remember
Sarah being shocked? Going to the going to the hospital after and being really confused and nervous.
Scott Benner Confused and nervous. And, Matilda, are you married?
Matilde I am.
Scott Benner Okay. Did you call your husband right away?
Matilde I did. He too was super confused. He had to pick up my my other daughter, Sophie, and I took my daughter to the local. They suggested go straight to the ER, the pediatric Unfortunately, we knew the a nurse that has been at that institute for many, many years. So she immediately treated us like VIP. Mhmm. Immediately, they saw my daughter. When they checked her blood sugar, I think she was at that point let's call it, like, one sixty. Right? So they said they took us right away from there to meet the endocrinology team. And I was let me tell you a wreck. Like, I think about it, and I can't even believe. It was very emotional. But I wanted to come on today to tell you what a fabulous experience we had because I know so many of your listeners have had such rough diagnosis stories, and and they got so little support. And we didn't we did not have that experience. My daughter was taken by the endocrinologist. Immediately, they explained to us that she was in the honeymoon, you know, initially. And so and within two hours of being at that appointment, they put the Dexcom on her. Okay. You know?
Scott Benner How's it feel, Sarah, to hear your mom feel so emotional about all this? And have you seen that emotion from her before or since?
Sarah I haven't really seen that emotion from her since I was diagnosed. She always is super strong about it. Encourages me to be strong about it too. And I feel like a big part of me getting through this was because of my mom and all the help she gave me because she's, like, was kinda my she's still is my partner in managing this.
Scott Benner Yeah.
Sarah So I'm really grateful to her for that.
Scott Benner Do you have a similar feeling, like, when you think back on your diagnosis, or are you are you listening to her right now and thinking, wow. This is what it feels like to have a kid apparently.
Sarah No. When I think back at it, yeah, I got a little, like, upset because, like, in in the beginning, I was really confused on, like, on why me. Like, I've never had a health issue in my life.
Scott Benner Right.
Sarah Up until that point, I was, like, the healthiest person ever. So I was very confused why, like, this was showing up now. And I don't know. I was concerned about, like, if people were gonna, like, look at me differently. And, like, I remember, like, being concerned then, like, people were gonna think, like, I eat ate too much or, like, something like that because, like, there's a bunch of misconceptions with diabetes and stuff. Mhmm. But, obviously, there is, like, a difference between type one and type two.
Scott Benner Has that been an issue? Do you did you have friends or acquaintances that misunderstood your situation?
Sarah Yeah. Like, still honestly to this day, people ask me like, oh, like, you can't I mean, does that mean you can't eat sugar? Blah blah blah. Like and it gets it kind of annoys me. But I mean, honestly, it's not it's not really their fault because they just haven't been educated on the topic. So whenever something like that occurs, I take a moment to educate people.
Scott Benner Good. Okay. So you don't get upset, you just realize there's there's no way for them to know and you help. Yeah. Okay. That's awesome. Does it make you feel good, Matilda, to hear that she's having such a an even response when people talk to her like that?
Matilde I'm extremely grateful. I want you to understand and other parents to understand that that it's a very steep learning curve, and there was a lot of support. We had therapists involved from the get go. We had nutritionists involved from the get go to really help us with that steep learning curve and to give us that support that we needed so that our living life and enjoying life momentum didn't stop.
Insulin Management and Choosing MDI
Scott Benner Let's figure out how you figured all this out. So there's some education in the hospital, and then what happens? There's a is there an outpatient education after that? Do you go back to the hospital afterwards?
Matilde So what happened? Because she was so low like, her her a one c at that point of diagnosis was six point o. Mhmm. Her blood sugar, as we all know, two forty isn't that high. That's, like, on her you know, to get caught at that to be diagnosed and found out at know, when you have zero symptoms. Zero.
Scott Benner Yeah.
Matilde It's like a a blessing and and, like, like crazy how that happened.
Scott Benner That doctor's appointment was just well timed, really. Correct. Luckily. Yeah.
Matilde Correct. Uh-huh. And then, you know, they sent us home. They sent us home. They gave us the prescriptions for the insulin. They're like, don't use it yet until you need it. And, you know, so we got the insulin, the whatever at that time, I think of Humalog junior, and you're, like, staring at it, like, when am I supposed to use this?
Scott Benner Mhmm.
Matilde So what happened is she ended up getting, let's call it a month or so later, a tonsillitis. And they put her on prednisone. And that's when the party started. You know, the three hundred blood sugar. And so then we had to do the first time the insulin. I wish, and I think Sarah agrees with me, because they had us initially on a very carb strict diet, which in my opinion, can cause, like, eating dysfunction because she was on, let's call it, I think if I can recall, 30 carbs. Nothing.
Scott Benner A day?
Matilde Yeah. And we we we went we did that for, I don't know, let's call it, like, a month ish. It's a blur, but let's maybe max two months. And then finally, thank god, the prednisone thing happened. We had to introduce the insulin injections into start bringing that blood sugar down, and then she was super skinny. Imagine. And she's tall. My daughter right now is five nine.
Scott Benner Yeah.
Matilde And she weighs, like, less than a hundred and thirty pounds, you know?
Scott Benner Sarah, I have a couple of questions for you.
Sarah Yes.
Scott Benner This one might seem out of left field. Do you get tonsillitis a lot?
Sarah No. No? That was the only time I've ever gotten it. And also, mom, you said something about eating dysfunction. I just wanna make it clear. I've never had an eating disorder to those listening. And I think it was, like, 30 carbs per meal. I don't know about per day.
Scott Benner So it's interesting. The way you remember it, mom, is that her somebody told you to kind of restrict your carbs to go lower carb. Yes. Do you remember that time as particularly difficult?
Sarah Yeah. It was Yeah. Super annoying. Like, I had to watch everything I was putting in my mouth.
Scott Benner Right.
Sarah And honestly, like, looking back on it, like, I should have just been able to eat what I wanted and just given insulin for it.
Scott Benner Yeah. You didn't quite understand that at that point. And who gave
Sarah you that Honestly, what was what I don't I still don't see the purpose in
Scott Benner that. Right.
Sarah Like, what? I don't don't understand.
Scott Benner Who gave you that information?
Sarah An endocrinologist. The endocrinologist.
Scott Benner Okay. So let me ask you a question because you you said something earlier. A lot of people do this. They come on and they tell me how great their doctors are, and then they tell stories for an hour about how the information they got wasn't great. When you tell me that that you were lucky that you got started well, what does that mean to you?
Scott Benner When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No.
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Matilde It means to me that they gave her immediately the technology
Scott Benner Technology.
Matilde The true diagnosis. Like, there was no immediately, I knew my kid had type one. Like, how many times parents are like, I don't know what they had. They maybe they have this. So I knew right away her diagnosis.
Matilde She was introduced to to me. The Dexcom is life changing technology immediately on her body, plus I had the insulin. Now with what you're saying is true, the diabetic educator put her on that carb restrictive diet, which I agree. No good. That's where parents it's incumbent on the parents to educate themselves, and that's where you, Scott, are a blessing in my life.
Matilde I can't tell you the amount of what I how you changed the course of learning what you did with Arden and learning with the bowl beginning series listening to other parents and and type one people share their stories, that's how I learned.
Scott Benner Oh, I'm glad. That is lovely. I am so happy that you figured that out. But I wanna go back and just put a put a kind of a cherry on that other idea. You feel like you were treated well in the beginning because you got a firm correct answer as far as a diagnosis goes.
Scott Benner Someone showed you technology and didn't make you wait for it. That really is what you consider to be a great start.
Matilde Yes.
Scott Benner Yeah. Okay. Well, I I think that's valid by the way. I just wanted to, you know, I think sometimes people hear that and they think that, you know, they got some magical doctor who, you know, knew everything. But you're just saying, look, I just got a good firm, you know, foundation and a good start on all this.
Scott Benner Then you went off and found other information. So how long after her diagnosis did you think to yourself, I have to go find other information. I don't have enough to do what I need to do.
Matilde I would say very quickly. Initially, you feel very alone. Right? Because you're like and I was so grateful that I was introduced to other mothers in my area, in the Miami area, a group of three ladies. I could message them.
Matilde And one of the questions that I that I found so impactful that I or or realizations that I found so impactful was one day I texted a mom and I said, wait a minute. This is a disease that the goalpost is constantly moving. And she goes, bingo. Yeah. That was a hard pill to swallow.
Scott Benner Right. Right. Did not to think you couldn't just figure it out, write it down, and keep doing it. It that it was gonna keep changing. And did you pass that on to Sarah?
Scott Benner Like, as you learn things about it, how do you remember your mom bringing you back information, and were you looking for information on your own, or were you counting on her?
Sarah Honestly, I counted a lot on my mom. And I remember she started listening to your podcast, and she would tell me things about it, and we used some of your tips and whatever, etcetera. And that really started to help us. And also, I met the mothers that my mom was referring to earlier. I met, like, their daughters who were younger than me.
Sarah But it was nice to see that other people were going through the same thing I was, so that was really helpful.
Scott Benner Okay. So your mom brought you information and you found other people in a similar situation and made you feel a little more comfortable while but maybe while you were figuring it out, there was a a feeling that you could get to some sort of an answer because those girls were doing well. Is that the idea?
Sarah Yeah. Since I saw them doing well, I knew I was gonna be fine. And honestly, I was fine. So it it just brought a lot of comfort.
Scott Benner Okay. Awesome. And you use what now? You have a CGM, I heard Dexcom, but do you have a pump?
Sarah I use the Dexcom g seven and FIASP multiple injections and Tresiba at night.
Scott Benner Okay. Oh, so you're using pens?
Matilde Correct.
Scott Benner Awesome. And you've been doing that for how long?
Sarah I it was ever since I've
Scott Benner Been diagnosed.
Sarah Started using the injections Okay. After I had the prednisone.
Scott Benner Tell me why you don't have a pump.
Sarah I don't like having multiple devices on my body.
Scott Benner Okay. So just it's about real estate for you and not hanging more stuff?
Sarah Yes. Correct. And I'm doing fine with the injection. So if it ain't broke, don't fix it.
Scott Benner Yeah. Yeah. How are you doing? What's your a one c right now?
Sarah Well, actually, in my last blood work, they forgot to do my a one c.
Scott Benner How is that possible, sir? What the heck?
Sarah Yeah. I'm not really sure.
Matilde But on
Sarah the Dexcom, it says, like, about about 6.2.
Scott Benner Good for you. That's awesome. Do you have a lot of lows or protracted highs that you can't get down for hours at a time, or is that not your day usually?
Sarah Like, not really, but I want normally, when I have a high, I can get it down pretty quickly. Mhmm. It just gets more challenging when it's at night. If I've eaten something carb heavy or, like, that'll hit later in the night, that's when it gets a little tricky. Yeah.
Sarah So I have another I also have another insulin for that. What is it called?
Matilde Scott, I can't remember.
Scott Benner Is it the inhaler?
Sarah Come to I think it's something with an l. Lyonjev or something.
Scott Benner Loomjev? Yes. Okay. So you're using
Sarah It's an older insulin. Correct?
Scott Benner No. No. It's a newer one. Loomjev and Loomjev and and Fiaspora, the two faster acting insulins. Why do you have both?
Scott Benner Is it not that maybe? Lispro?
Matilde May I interject? Please. It's, the one she uses for nighttime, what and and I I have to think about the name.
Sarah Lantus? Novalin. Novolin. Alright.
Scott Benner Well, who set you up with that?
Matilde Integrated diabetes, which was also introduced to us by you, Scott Mhmm. Through the the, you know, the amazing Gary Shiner. I also use their services for when we need additional support and education and and normalizing. Yeah. We use Tavia.
Scott Benner Oh, sure. Oh, you know, I'm gonna see her in a couple of weeks.
Matilde She told me to tell you hello because we met with we talked with her yesterday.
Scott Benner Nice. Yeah. She and I are doing a private event together in, like, two weeks, maybe three weeks.
Matilde So she suggested let's say Sarah goes out to party, you know, and then she eats late at night and then goes to sleep. She suggested the Novalin because it's a slower acting insulin that doesn't have a quick onset and it takes a long it stays in the body longer. Mhmm. Am I saying is it the Novalin? Am am I right about that one?
Scott Benner I mean, you're asking me what you're doing?
Matilde No. I think I we don't do it that much. Okay. It's occasional. You know, because she doesn't go out at night all the time and eat late at night all the time.
Scott Benner So what did they give it to you for? Because it's
Matilde Because it's slower acting and it stays in the body longer. So if you eat, let's call it, like, a pizza late at night, it can help with her control. We don't do it all the time. Mhmm. But the cool thing with it is that you can get it at Walmart with no prescription.
Matilde It's super strange because it's an old
Scott Benner It's it's r insulin. Right? Novalin r? You That's what you're talking about? Regular.
Matilde Think that's what it is. Yeah. We don't use it that much, obviously. Look. We don't even remember the name.
Scott Benner But if you get a sticky hi, Sarah, you use that?
Sarah Yes.
Navigating School and Independence
Scott Benner Okay. Sarah, when your mom says going out to party, she means watching Disney princess films and eating Cheetos. Right? What does she talk to
Matilde about?
Scott Benner Yeah. Yeah. Are you in Miami?
Sarah Yes.
Scott Benner Oh, is it hard to live in Miami and be a kid?
Sarah No. It's great.
Scott Benner It's great? I was just there.
Sarah Really?
Scott Benner Last year and again this year, I'm taking a group of listeners on a cruise in June, and it goes out of the Miami Port. We're using a different cruise ship this year than we used last year, and the cruise company wanted me to see it. So I went and did a cruise with my wife right before Christmas. So we were in Miami for the night then went to the port and headed out and then came back that way. So I didn't get to see a whole lot of it but that's nice place.
Scott Benner So and I know people who have lived there. But the partying is is it's Miami. Right? Like, you're out. There's get togethers.
Scott Benner You've gotta kinda deal with things.
Matilde It's Yeah.
Sarah It's more like casual get togethers
Scott Benner Mhmm.
Sarah That sometimes go late. So if if I end up having I I probably end up getting a little hungry at the end.
Scott Benner So little meal. Yeah.
Sarah Yeah. I hear Yeah. Exactly.
Scott Benner When you're doing that. Okay. When you carry your stuff, how do you carry, like, a pen? Is it just in your purse or what do you do?
Sarah I have, like, a huge black no. It's not huge. It's this black pouch with a bunch of compartments where I keep my juice, my, Gevo hypo pen, and my main insulin
Scott Benner Mhmm.
Sarah And a little sharps box and just all my supplies, my alcohol pads, my needles, everything. So that's my pouch for school. And if I'm going somewhere nicer, I'll just put my stuff in a purse.
Scott Benner Okay. And you pre bolus your meals or no? What does the fiasse work fast enough
Matilde for you?
Sarah I can.
Scott Benner What does that mean, Sarah?
Sarah In the morning before school, it's I can pre bolus.
Scott Benner Mhmm.
Sarah At school, I cannot pre bolus. It's very difficult because I don't know what I'm gonna be eating.
Scott Benner Okay. And you don't wanna shoot twice. Like, you don't wanna give yourself a little bit, then figure out what you're eating and give yourself the rest? Or do
Sarah you Honestly, that might not be a bad idea.
Scott Benner Yeah. So what if you don't mind injecting, then I would pick an amount of carbs that you know for sure you're gonna eat, hit that as a pre bolus, and then when you settle on food, just put the rest
Matilde of it in.
Sarah That's very smart.
Scott Benner Thank you.
Sarah I'm gonna do that.
Scott Benner Alright. Try that. See how
Sarah that works. Have a lot of trouble keeping my well, not a lot of trouble, but I typically spike when I'm in school.
Scott Benner Yeah. Because you're probably bolusing while you're eating. Right? Yeah. Yeah.
Scott Benner Oh, that's a good see if that works for you.
Sarah Try it.
Scott Benner That's a tip that parents use for little kids because they never be it's similar idea. They little kids sometimes sit down and don't eat. And so people are like, well, I can't pre bolus because sometimes the kid doesn't eat anything or they take a couple bites. And I I ended up saying, like, years ago, like, there must be something, you know, they're gonna eat. And I remember mom saying, like, delete at least five carbs.
Scott Benner I'm like, well, pre bolus five carbs then. And then get the insulin on your side, get it moving, helping you, and then put the rest in later. That's all. Well, good for you. Well, I guess we're we're fixing the problem.
Scott Benner No other autoimmune in the family? Thyroid, celiac, anything?
Matilde No. Scott, my father did have diabetes. He was diagnosed in his, let's call it, late thirties, early forties. I always remember seeing needles, syringes, insulin in my home as a child, young, you know, teenager, but I never understood. I never knew anything about blood sugar.
Matilde I never knew even the range. I never even knew what insulin did. My father has passed approximately, like, five years ago, So I was you know? And he did pass from diabetic related complications that eventually resulted in congestive heart disease.
Scott Benner Mhmm.
Matilde My instinct because I would go with him to a lot of doctor's appointments, and I have, like, little memories that pop in my head. Yeah. Think my father had type one and a half. Can I confirm? No.
Matilde But it was like my father was an athlete, always exercised, always jogged, and so who knows? I will I'll never really know.
Scott Benner You're never gonna know. Yeah.
Matilde He was uncontrolled due to numerous things. The technology that it was available at the time due to his personality that he loved the wine, the cheese, you know, the meat, whatever, like, the stuff, the good life.
Scott Benner How how old was he when he passed?
Matilde 70.
Scott Benner Okay. Yeah. I mean, it's hard to know. Right? Like, if he if he was misdiagnosed or I mean, what was the management like?
Scott Benner Just insulin.
Matilde For him? Yeah. You know, I recall never did he ever in my life when we would go out to eat, never did he have insulin on his person. He would check the blood sugar at home in the morning and it at night. My father loved juice.
Matilde Imagine.
Scott Benner Like Fruit like, just fruit juices, orange juice, grapefruit, that kind of thing.
Matilde Juice. All the juices.
Scott Benner Just all the juices.
Matilde You know, which is like, hello, the worst thing ever. Yeah.
Scott Benner Okay. Hey. You talked about in your note about grief, and I was wondering, you know, was that for both of you or, mom, was it just for you? What was the what what happened? How did you work through it?
Matilde Yes. You know, as it relates to there definitely was grief for my daughter feeling because, you know, I don't want her I didn't want her to carry that responsibility and burden. Mhmm. So that is very difficult. But with that being said, I'm a person that I can be brokenhearted, super but I keep it moving, and I keep it cute.
Matilde I keep it moving, and I keep it good. And you I can be devastated, but I I get up, I do my hair, I go get dressed nice, and I'm like, that's how I am.
Scott Benner Yeah. Sarah, is that how you see your mom? Is it, like, surprising to you to know that she experienced grief after your diagnosis, or were you not even aware of that?
Sarah No. It's it's not surprising to hear now, but because it's true. I guess she was going through that kind of thing, but she did keep it moving and she kept it cute.
Scott Benner So And how about you, Sarah? Did you feel grief?
Sarah Yeah. I remember being a little sad.
Scott Benner Stuck to you for a while. What do you think helped it go away? Time or something someone said or did?
Sarah Maybe, like, time, honestly. Because when you first get diagnosed, it's just a big shock and, like, my mom spoke about earlier, it's a big learning curve. So once you learn about those things and I feel like a big part of this disease is trial and error.
Scott Benner Mhmm.
Sarah And you have to go with your gut a lot in this in this disease.
Scott Benner Yeah.
Sarah It's kind of like a number game, honestly. And maybe your doctor will tell you to stick to a specific formula, but I'm just gonna tell you right now, you can't always listen to your doctor. Like, this sounds horrible, but you have to do what's best for you as well. Like, if that means giving some extra insulin, you're gonna have to do it.
Scott Benner Yeah. You think maybe that's a starting point and they're hoping you'll figure the rest of that out? Or do you think that they don't know that there should be like, what's your experience been when you've gone back to your doctor and said, hey. Look. I gave myself more insulin here or I've changed my settings.
Scott Benner Do they generally seem supportive of that?
Sarah Yes. They do. But I'm in a different situation than some of their other patients because I think the normal how many times a year do I have to go visit their mom?
Matilde She, because of her well controlled numbers and and her responsibility, she normally only goes to the Endo now in person once a year.
Scott Benner Yeah. That's what our
Matilde We do the labs. They come to my house. I lay you know, I pay a little money, and the lady comes to my house and pulls her blood. And we do the diabetic educator appointments virtually
Scott Benner Mhmm.
Matilde For the most part. But Sarah's also a youth ambassador through breakthrough type one, so we see her endo, like, at events too. You know? Yeah. I have to tell you something, Scott.
Matilde This is the most important thing that I want you to to impart to the parents. You taught me what to do when you send your kid to school. Right?
Scott Benner Okay.
Matilde So when my daughter was diagnosed, the first thing she told me was this, mommy, I cannot be like this one girl that goes to my school that has a nurse walking behind her, carrying her book bag, and giving her snacks. She was like, I beg you. She was, like, petrified.
Scott Benner That that was her situation?
Matilde Correct. Yeah. So I was, like, scrambling. So I goo you know, I looked in your podcast, like, what to do in school. So I learned from you that when your daughter was a baby, I don't even know, second grade or third grade, you're like, forget it.
Matilde We're gonna handle this between my kid and I. We don't need the nurse. We don't need anybody else. We got it. So I said to myself, okay.
Matilde Immediately, when it was time for her to inject herself, I'm like, it. You have to do it. I'll text you. We'll text each other. You're going out?
Matilde Text me. Mhmm. Because the biggest thing that I learned from you, Scott, is that you cannot take away the kid from the classroom because they they miss instructional time.
Scott Benner Yeah. No kidding.
Matilde And the public school my kid was at at the time, the rule was if I signed up for nursing services, she would have to go to the nurse three times a day, in the morning, in lunch, and at night. I mean, you know, in the afternoon. Mhmm. Who has time for that?
Scott Benner Yeah. No. You you miss a lot of a lot of instruction that way and and it can you can easily just create a gap there. Sarah, the thing your mom's talking about is that when my daughter was in second grade, there was a prescribed time that she had to go see the nurse and it was in preparation for for eating. But what no one realized is she was leaving every day as the math lesson was being taught.
Scott Benner And it's just the the way the teacher had the day set up, she'd hand out the math lesson and just a couple of moments later, Arden would have to leave. A timer would go off on her phone. She'd stand up and leave. And Arden was missing the direction every day for the math lesson and she had fallen pretty far behind to the point where we actually we thought, like, I mean, honestly, Sarah, we thought she was just a little stupid. You know what I mean?
Scott Benner And, like, like, because it had gotten pretty far out of hand. We're like, oh, Arden's not good at math. And luckily and she lived the whole year like that, second grade. And then luckily in third grade, her her second grade teacher did that thing where she leveled up with the whole class. So the whole class had the same teacher two years in a row.
Scott Benner And then the math lesson moved to a different time in the schedule. And early on in third grade, the teacher called me and she said, oh my god, Scott. She's like, Arden's not bad at math. I figured out what happened and she told me. And it took Arden a while to catch up and she did, but it still sticks to her.
Scott Benner Like, she's 21 right now. She'll be 22 this summer. And no matter how good she is at school and she's very well and she's fine with math and everything, you can still see in the back of her head, she thinks she's not good at math. Like, it's a thing that stuck to her after all that time. So not only did it slow her down in second and third grade, but it it impacted her moving forward.
Scott Benner And, you know, you just you can't miss school. Like, you don't know what it is you're gonna miss exactly. I'm glad that that worked out for you. So you guys just texted each other and handled it that way.
Matilde Yeah. We texted each other. The school made me when I selected to be the five twenty nine where she would get extended time for tests and so forth, they said to me, well, if you waive the nursing services I opted to waive the nursing services because I didn't want my kid to go three times a day to the nurse. Yeah. And I told them they're like, well, if there's an emergency, I said, you know what?
Matilde If there's an emergency, call 911 before you call me. Treat my kid like another kid.
Scott Benner That's exactly what I told them. It didn't mean I don't want the nurse if she falls and breaks her arm or she has a seizure or something like that. I I want the nurse. I'm just saying I don't think we need her to be there on a schedule constantly. Like, we can take care of bolusing for food and stuff like that.
Scott Benner So yeah. Yeah. So you basically just did what the what I was talking about in the podcast.
Matilde Correct, Scott. That's why I love you.
Scott Benner Like And it worked.
Matilde Yes. It works. Yes.
Scott Benner Why did you wanna come on the podcast, Sarah?
Sarah Because I wanted to show other parents and even if other kids are listening that you can still be perfectly normal and have this annoying disease but still live your day to day life and enjoy life.
Scott Benner That's awesome.
Sarah And I feel like a common misconception when you have this disease is that you have to stop your life and take a moment to learn everything, which is true. You do. But as you're learning, you can keep going.
Scott Benner Yeah.
Sarah Like, keep it moving. Keep the train moving. The train doesn't stop and it doesn't it's the train is not gonna stop for diabetes. So
Scott Benner Yeah. That's awesome. I mean, you got a great attitude about it. I I'm not gonna lie to you. I think that setting you up to be you know, to have some control over yourself at school goes a long way to getting yourself, you know, your self esteem and and confidence rolling in the right direction.
Scott Benner I mean, you're obviously having good outcomes. You understand how to use your insulin. That's, I think, a big part of the whole thing. You're confident. I were you were you a confident person before this?
Sarah Yes. Yeah. I think I'm confident by nature.
Scott Benner Yeah. Being tall doesn't hurt either, Sarah?
Sarah And also, I'd like to add on to the nurse thing. That was, like, obviously one of my biggest fears because there was a girl in my school who was constantly being followed around and I was not about to be that girl. Mhmm. And also, as one of my electives at school, I would help in the office and that's where the nurse was. So I would encounter her whenever I went to my little office help and she spoke about some this other girl and was telling the other office ladies about her health situation.
Sarah She was diabetic.
Scott Benner Mhmm.
Sarah And that's just a violation of privacy. So that was even more of another like, that was that was just another reason not to use this woman's services.
Scott Benner So you're there horrified listening to her spill the tea on somebody else's life. Exactly. Yeah. And you're like, woah. If you knew me, would you be talking about me like this?
Sarah Exactly.
Scott Benner Oh, so you're trying to keep your stuff to yourself.
Matilde Mhmm.
Scott Benner Do you have other people you can talk about it with though? Do you have some close friends who understand? Like, if you were with a group of girls and and you, you know, got dizzy and you couldn't help yourself, does somebody know what to do?
Sarah Yes. My close friends know what to do in that case. Like, if they see me feeling bad, like, I feel like the fur the first instinct would be, oh, do need to eat something? Or if it's really bad, they know to use the pen, like the Gevo Kypo pen.
Scott Benner Good. Good.
Sarah But I have a good supportive group of friends who look out for me.
Scott Benner Awesome. And you sound like a reasonable young person, which I'm happy about. You would never drink or do drugs. No. Is that right, Sarah?
Scott Benner Yeah. Right? And and if if your mom wasn't here, you'd say the same thing?
Sarah No. I would definitely say the same because, honestly, with diabetes, you just have you have to be even more careful with your health.
Scott Benner You're not looking for extra problems?
Sarah Correct.
Looking Ahead: College and the Future
Scott Benner Yeah. Or to make this harder. Right?
Sarah Mhmm.
Scott Benner Yeah. Okay. Very nice. Do you plan on going away to college?
Sarah I do.
Scott Benner Where are you gonna go? That's an interesting thing. Like, when you live in a place where everybody's trying to get to it, where do you think to go when you're leaving? You know what I mean? Like, a lot of people are like, oh, I wanna go to Miami to go to college.
Scott Benner Like, you're there. So
Sarah Oh, exactly. Yeah. Honestly, I feel like that is just is one of the best universities out there. And if it wasn't two minutes away from my house, catch me there.
Scott Benner Well, can I share something with you? Sure. My daughter said to us recently when I was leaving high school, she's like, I thought the worst thing that could happen to me is that I'd be one of those people who went to school five minutes from my house. And so I went to this place and then she switched and went somewhere else and she and then eventually, she's like, I'm just gonna come home and finish up at home. And she's like, I don't know if that's the right answer for everybody.
Scott Benner She's like, but I do wish I wouldn't have felt so embarrassed by the idea of looking close to home. So, I don't know. Maybe maybe that won't be your finding. She's Well pretty happy with it now.
Sarah Oh, that's so nice to hear.
Matilde But you don't think it's
Scott Benner of here.
Matilde Yeah. Yeah. I don't
Sarah think it's an embarrassment thing. I just think like, I wanna discover something new and
Scott Benner Okay.
Sarah Get out of my comfort zone a little bit. And I feel like I'm not gonna be able to do that in my same neighborhood with the same circle of people
Scott Benner Mhmm.
Sarah With, like, the same support system around me. Like, I feel like I have to step out a little bit.
Scott Benner I hear you.
Sarah And I feel like I've I've worked so hard and, like, I don't know. I want something different.
Scott Benner You're a good student? Yeah. Yeah. What is it you're interested in?
Sarah I'm interested in possibly studying communications or journalism. I'm the editor in chief of my school newspaper.
Scott Benner Nice.
Sarah And maybe or maybe going into law someday. I'm not really sure. But that's the areas I'm interested in.
Scott Benner Where do you think you're gonna look at school? Like, far mom, how far away is okay?
Matilde Yeah. Needs to be a plane, a nonstop flight easy. Mhmm. East Coast for sure. That's it.
Scott Benner Yeah. What about the weather, Sarah? Are you gonna go somewhere cold?
Sarah I mean, maybe.
Scott Benner Oh my god. I just wanna live somewhere warm so badly. I I would
Sarah Where do you live?
Scott Benner In New Jersey.
Matilde It's We can swap.
Scott Benner Yeah. You wanna come oh, you wanna be close to the city. Maybe. I'm a fifty minute train ride from Manhattan. Okay.
Scott Benner Listen to her laughing. You can't let her out of the house. She's gonna Sarah, you're gonna be a problem when you get out of there, aren't you? Listen to her laughing, but you can't let her leave, Patoni. Well,
Sarah I'm gonna be such a problem.
Scott Benner Oh my gosh. Well, that's awesome. And what do you have? Two more years?
Sarah I'm finishing well, I'm in the third quarter of my junior year. Mhmm. And then I have my senior year and then I'll be out.
Scott Benner Okay. Very nice. That's awesome. Hey. Listen, I've been wondering this the whole time.
Scott Benner It's really not apropos of anything and has nothing to do with your story, but your mom speaks more than one language. Right?
Sarah Yes.
Scott Benner Yeah. Do you?
Sarah Yes. I do.
Scott Benner Okay. Matilda, I'm sorry. Are you first generation or second?
Matilde No. I was born here in The United States. Actually, I was born in Virginia, but I've lived in Coral Gables in my whole life since I was five years old.
Scott Benner Okay. Okay. Because I was gonna I have a a friend of my daughter's her mom's first generation from Italy, and she talks a lot about the difficulty she has, like, because her mom struggles with some things, like, you know, language sometimes or but you guys don't have that issue.
Matilde No. My my family, my mother was American from The United States and my father was Colombian from Medellin, Colombia.
Scott Benner Oh. Oh, Mhmm. He hooked that mom. Is your mom still alive? Is she okay?
Matilde No. My parents have both deceased. Both deceased. My mother predeceased my father by, like, seven months.
Scott Benner Oh, gosh. Oh, I'm so sorry.
Matilde Yeah. Thank you.
Scott Benner Yeah. Sarah, can I ask a weird question? Is it weird to hear your mother say, my dad passed away, I think, five years ago? Does it make you feel like, oh my gosh, is there gonna be a time in life when I don't remember exactly when my parents left? Is that or is that too deep or you're young?
Scott Benner I don't know if that hit you or not when she said that. I I don't want you to cry. You'll be like, no. I'm thinking about it now though. Thanks a lot.
Scott Benner But but but but, like, I my mom passed away, I told you. That's why I asked, and, like, I'm starting to lose the concept of how long it's been difficult.
Matilde Yeah. No. And I'm so sorry for your loss Thank you. Scott.
Scott Benner Thank you. But, Sarah, back to my question. Do you have, like, a feeling for, like, time? Is that something or are you just so young you do not think about that like that?
Sarah No. I I I do have a feeling of time. I feel like, obviously, I was diagnosed. It's almost gonna be four years, but I feel like it's it's crazy to think because I I can't believe time has flown by that fast.
Scott Benner That fast.
Sarah Not even diabetes related. Like, I can't believe that I'm a junior in high school and starting to look at where I'm gonna go to college. Like, it feels unreal.
Scott Benner Right. No. For sure. Do you date? No.
Scott Benner No? When you think about dating, do you think about the diabetes as well?
Sarah Not really. No. Because I don't date.
Scott Benner You feel like I don't need any of that problem. But is that because you can't find you you're just not interested in it right now? You're busy with your other stuff?
Sarah Yeah. I'm, like, busy with my my own life.
Scott Benner Okay. And you don't wanna bring somebody else into it and and then you have to give time to something or somebody else. Is that right?
Sarah Yeah. I guess I'm just protecting my peace.
Scott Benner Yeah. You're telling me there's a lot of crazy people at that school. You can't find one that you think is normal? Listen, I love it when she laughs when she doesn't wanna answer between you. That's my favorite part of Sarah.
Sarah I think everything is meant to happen for a reason. And when it's the right time, it'll be the right time.
Scott Benner And you won't have trouble when when that time comes. You won't have trouble sharing your diabetes with somebody else? No. Okay. It's not a thing you'll wanna keep private?
Sarah I don't think so.
Scott Benner Okay. So it's interesting. So you don't your problem with, an insulin pump isn't that somebody will say it. It's that it's it literally is that it's on you. Yeah.
Scott Benner So you don't mind do you inject in public? Do you do people see you inject
Matilde your insulin?
Sarah I do inject in public.
Scott Benner Okay. Yeah. Okay. That makes sense. Alright.
Scott Benner Isn't it great that she's not dating?
Matilde You know, she can my kids can they don't have a curfew. They can go out. They're they're I always know where they are. They always call me, text me. You know, the culture here is, you know, in in Miami, we to is to enjoy life, go out, be with your friends, have a good time.
Matilde She's super responsible. If she wanted to date somebody, she's more than allowed, of course. But she's very busy with working out, studying with her friends. Yeah. She's very busy.
Scott Benner Do you see what your mom's doing? It's genius. She's not holding on tight so you don't feel restricted, and therefore, you don't feel like you have to, like, push back. Exactly. Did you know she was doing that to you?
Sarah Like, not really.
Scott Benner No. No. You know, Matilda, how did you figure it out? Were you were did your parents treat you the same way or did they did they try to restrict you when you rebelled?
Matilde No. No. No. No. No. I had a boyfriend my whole life.
Matilde Always. Always. But that was just how it was. I always had a little boyfriend, and I thought it was I think it's super healthy and super nice. Yeah.
Matilde You know, you get and then you end up graduating and getting a great husband like what happened to me.
Scott Benner Very nice.
Matilde But I will tell you something. I wanna tell you this, Scott
Scott Benner Yeah.
Matilde So the parents know. My kid remember she missed the sleepaway camp when she was diagnosed because she was supposed to leave in three weeks. Right. Right. The sleepaway camp, they don't have diabetic kids.
Matilde Right?
Scott Benner Mhmm.
Matilde So the next year came and I was like, oh my god. Are we gonna send her? Because my young kid my youngest wanted to go too. I had to do a lot of mental gymnastics and we had to do a lot of conference calls. We did like conference calls with the camp.
Matilde Like, I pushed myself and I pushed Sarah. She was a mom. I don't think I wanna go. And I was like, you're going.
Scott Benner Because
Matilde a mom that I met, a type one mom that has two type one kids in in this Miami area, she told me, if you were gonna do it before diabetes, you gotta do it after. So I pushed myself, you know, pins and needles shaking, but you're going. Of course, the camp made the exception to allow her to have the cell phone, which, you know, these camps are cell phone free, but she has to keep it. So that's why, you know, in preparation for if she wanted to leave her house. Scott, I never I mean, I've when I tell I've lived in Miami.
Matilde I went to undergraduate school here and graduate school here. I didn't move out of my house until I was 28, until I bought my own little apartment. Like, I'm a, like, a home girl. Like, you know?
Scott Benner Yeah. Yeah. Yeah. Move you're moving slowly. You're doing things very specifically.
Scott Benner Yeah. Yeah.
Matilde And so I wanted to just for her to have the tools, like, okay. If you wanna go, go. But, you know, get some practice, you know.
Scott Benner So you're not in any rush to leave either? Sarah, like, you think it's possible you'll go to college then come back home?
Sarah I think so. Yeah. Definitely.
Scott Benner I mean, listen, you're gonna need to save some money. This stuff ain't cheap. Yeah. Is that a thing you think about? Like, my my daughter talks about that sometimes, like, how do I make sure I can pay for my health insurance as an adult when I'm by myself and everything?
Scott Benner Is that something that's entered into your mind yet? You're a little young. You might not have.
Sarah Not really.
Scott Benner Yeah. I wouldn't have thought about it either. Don't think at your age.
Sarah I I, like, see the price of things nowadays. It's crazy. So I I just know I'm gonna have to work really hard in general.
Scott Benner Yeah. It is true. Keep making good decisions and moving forward and stuff comes together.
Matilde Absolutely. And my daughters are have faith in God and they put, you know, put God first to make good decisions. Yes. Absolutely. She's gonna be fine Yeah.
Matilde One day at a time.
Scott Benner Sarah, if you're if you're a person, like your mom describes who, you know, has a religious belief in holding, is there a feeling you ever think about like why did I get this?
Sarah Oh, definitely.
Scott Benner What have you figured out so far when you mull that over?
Sarah So, yeah, first when I was diagnosed, I was obviously very confused and I always thought why why did why do I have this? Why why didn't why me? And honestly, even on the hard days, I still feel that way sometimes, but you go through like ups and downs. Some days are harder than others, and it's hard because sometimes when you're having a hard day you see others having like an easy day, but they probably have issues in their life that you don't know about, but this is just the issue I have to carry with me for the rest of my life. Hard to accept at first, but now I know that I I guess I know it was meant to happen to me Mhmm.
Sarah And I think it's made me into a stronger person.
Scott Benner I bet it is. What constitutes a hard day?
Sarah Probably like the censor being, like, all messed up
Scott Benner Okay.
Sarah Or, like, a hard night.
Scott Benner We have to put in more extra effort or technology doesn't work the way you expect it to. Well, you know what? I I know this is not a thing you have context for, but I've spoken to people who've been living with diabetes for all different lengths of time and I I'm I'm happy that the that what constitutes a hard day for you is that your sensor didn't act right or that you had a blood sugar, you had to fight with a lecture longer because that is such a better better situation for people with diabetes. And and it makes me excited for what, you know, what a hard day will sound like ten years from now. Do you ever think about, like, the algorithms that are available in the automated systems and how they might help you overnight?
Scott Benner Like, do you ever think, like, oh, maybe I should just get a pump?
Sarah No. Not really. Because I I have my centers get faulty a lot, I'd say. Mhmm. So it tells me I'm low a lot when I'm actually not low, and it'll just mess up my numbers.
Scott Benner Possibly. Yeah. I it it is part of it for sure. It it doesn't end up being as impactful as you think, but I just wondered if you ever thought about, like, well, maybe this thing, you know, if I'm asleep at two in the morning and my blood sugar starts to drift up, this thing will push it back down and take care of it without me having to wake up. See?
Scott Benner Or if you try to get low, it can stop you from getting low so it doesn't happen as often if it is happening. Are you getting do
Sarah you get low overnight ever? Not like, not really.
Scott Benner Okay. Are you more higher when it's an overnight issue?
Sarah Yes.
Scott Benner Okay. And how often does that happen?
Sarah How often am I high overnight?
Matilde I would say, you know, let's call it a few nights a month. Mhmm. Also, Scott, there two reasons she doesn't want to use a pump.
Scott Benner Okay.
Matilde Number one is because the amount of insulin she uses.
Scott Benner Small
Matilde enough. Uses, like, her basal is very low. Her carb ratio is, like, for 10 carbs, one unit. Yeah. Her insulin needs maybe are a little low for, let's call it, for the regular Omnipod.
Matilde Mhmm. Number two is because she doesn't want it on her body. For me, she doesn't want people to see it. Yeah. And plus, she likes to keep you know, those those things irritate the body.
Matilde They irritate the skin. We've done a lot of things. We do a a patch under the Dexcom, and we do then we put the Dexcom on. We know. We treat the skin.
Matilde We put a patch. Then we put the Dexcom. Then we put another patch. We have, like, a whole system to protect her skin. So that's, like, another thing.
Matilde You know? Yeah. And then here, you're you know, they're in the bikini in the in the small clothes. So it's like
Scott Benner Just not looking for extra listen. I don't not understand. I I'm just I was just wondering if she'd thought about, like, the idea of an algorithm being helpful to her. That's
Matilde all. Sounds fabulous.
Scott Benner Yeah.
Matilde Like, I think if her body needed it, and I think she would do it.
Scott Benner K. Yeah. I mean, you you you don't know. Like, she could also do this. You know, Sarah, you might do injections your whole life and just be like, hey.
Scott Benner I'm great at this and it works for me. That'd be awesome too, you know. I'm not saying there's a right or wrong way. I was just wondering. Have I skipped anything?
Scott Benner Missed anything at all? Is there anything we forgot to talk about or something you wanted to talk about? I wanna make sure I don't miss anything because there's two of you and it's a little more confusing for
Matilde me. Ultimately, I think the most important thing is as a parent, you're the one that has to advocate for your kid. You're the one that needs to get educated and learn how to really manage this condition because the diabetic educator that you see three to four times a year for max thirty minutes to an hour, they can help, but they can't manage the day to day. You gotta figure that stuff out on your own.
Scott Benner Yeah.
Matilde And that's where your podcast is. So what you've done for the type one community is like, congratulations. You know? Thank you. I really, really appreciate you and and and what you've done for our community.
Scott Benner Well, that's very kind of you, and it's my pleasure. I very much enjoy making the podcast. So, you don't really have to thank me for it, but but I I will accept your thanks and Yeah. And I will carry them throughout my day. I'm just very happy.
Scott Benner Like to hear you talk about, you know, some of the things you've had success with and how things are working for you guys anyway. What is my last question for Sarah? I have one last question. You're so young. I don't know if it's if it's too early, but do you ever think about having kids?
Sarah Yeah. I do.
Scott Benner You do? And is that a thing that has changed for you since you have diabetes or has it not changed for you how you think about it?
Sarah No. I actually wonder about that sometimes. Like, how's that gonna work? I'm building like, caring for a human in your body while caring for yourself.
Scott Benner Yeah. It can be a lot of work. There's a ton of information and a lot of ladies have have shared their stories in the podcast. If you ever get closer to thinking about it, you can listen to them. They'll talk about how their insulin needs change and shift throughout pregnancy and stuff like that.
Scott Benner It's pretty interesting actually. I have no more questions. I feel like you guys did such a great job of telling your story. I feel like I'm I'm I feel done.
Matilde Scott, thanks a million.
Scott Benner Thank you so No. Really. You guys are terrific. This is lovely of you to do. I appreciate you taking your time.
Scott Benner Sarah, why are you not at school? What's going on?
Sarah For this podcast.
Scott Benner Oh, nice. Got a day off?
Matilde Yeah.
Scott Benner Will you go in late or no? Forget it.
Sarah No. I'm not gonna go in late. I'm not
Matilde She's really she's super responsible. She can miss today. It's not
Scott Benner a problem. Well, that even that's very nice. I'm glad that that it seemed important enough for you to do something like that. Thank you. Seriously, hold on one second for me.
Closing & Sponsor Messages
Scott Benner I really appreciate this.
Scott Benner Touched by Type One sponsored this episode of the Juice Box podcast. Check them out at touchedbytype1.org on Instagram and Facebook. Give them a follow. Go check out what they're doing.
Scott Benner They are helping people with type one diabetes in ways you just can't imagine.
Scott Benner Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system.
Scott Benner Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try.
Scott Benner Eversense cgm.com/juicebox. Beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better.
Scott Benner Okay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that.
Scott Benner What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me, or Instagram, TikTok. Oh, gosh. Here's one.
Scott Benner Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group? You have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes.
Scott Benner Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi. If you're new to type one diabetes, begin with the bold beginnings series from the podcast.
Scott Benner Don't take my word for it. Listen to what reviewers have said. Bold beginnings is the best first step. I learned more in those episodes than anywhere else. This is when everything finally clicked.
Scott Benner People say it takes the stress out of the early days and replaces it with clarity. They tell me this should come with the diagnosis packet that I got at the hospital. And after they listen, they recommend it to everyone who's struggling. It's straightforward, practical, and easy to listen to. Bold Beginnings gives you the basics in a way that actually makes sense.
Scott Benner The Juice Box podcast is edited by Wrong Way Recording. Wrongwayrecording.com. If you'd like your podcast to sound as good as mine, check out Rob at wrongwayrecording.com.
#1804 Dr. Aaron Shiloh
Scott talks with interventional radiologist Dr. Aaron Shiloh of USA Hemorrhoid Centers about Hemorrhoid Artery Embolization (HAE), a minimally invasive outpatient treatment that resolved Scott's severe, chronic bleeding without major surgery.
Learn more at USA Hemorrhoid Centers or call (855)546-2511
Companies that Support Juicebox
Key Takeaways
- Hemorrhoid Artery Embolization (HAE) is a minimally invasive, outpatient procedure that reduces hemorrhoid symptoms by directly treating the underlying blood flow and reducing pressure.
- Uterine Fibroid Embolization (UFE) offers an effective alternative to hysterectomies, allowing patients to shrink benign tumors and relieve heavy bleeding without major surgery.
- Many vascular issues, such as medical vein disease (varicose veins), are genuine medical conditions covered by insurance, not purely cosmetic problems.
- Interventional radiology utilizes advanced image guidance to perform complex treatments through tiny incisions, drastically reducing recovery times compared to traditional surgical methods.
- Patients must proactively advocate for their own health, as insurance companies and even some doctors may default to suggesting older, more invasive procedures or delay necessary care.
Resources Mentioned
- USA Hemorrhoid Centers
- Juice Box Podcast - Bold Beginnings Series
- Wrong Way Recording
Introduction to Dr. Aaron Shiloh
Scott BennerWelcome back, friends.
You are listening to the Juice Box podcast.
Hey, everybody.
It's Scott.
I am here to let you know that today's episode is a little different than normal.
Scott BennerI'm having a conversation in this one with Aaron Shiloh.
He is a doctor who just performed a procedure for me.
We'll tell you all about it in a second.
It's one of those things that I hope you don't need, but if you do, you're gonna really, really be happy that you've heard about this.
Doctor Shiloh doesn't just do what he did for me.
Scott BennerHe does a couple of other things.
We'll talk about those as well.
So if you're a woman, experiencing fibroids, if you have varicose veins, he does a lot of cool stuff besides what he did for me.
It's actually very interesting how he takes his talents and his skill and applies it to places that you might not normally think about.
Anyway, I don't wanna ruin the fun for you till you jump in and hear the whole story, But I appreciate you being here and listening to this.
Scott BennerI hope this isn't something you need, but if it is, pay attention because doctor Shiloh really saved my ass, and he might be able to help you too.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise.
Always consult a physician before making any changes to your health care plan.
This episode of the Juice Box podcast is sponsored by USA Hemorrhoid Centers.
Go to usahemorrhoidcenters.com to learn about the procedure that I had and much more.
Scott BennerDon't let this be a pain in your butt any longer.
Aaron ShilohHello.
My name is doctor Aaron Shiloh.
I am an interventional radiologist working out of USA Clinics Group, performing many different types of minimally invasive treatments.
I'm happy to be here today to discuss, various treatments that we offer, probably with specific attention to the hemorrhoid treatments that we offer.
Scott BennerYeah.
Doctor Shiloh has been my physician, is my physician currently, and, we're gonna talk about, what I had done with him as well.
So I really appreciate you doing this.
This is a little bit of a left turn for the podcast about what we're talking about, but I feel like it might be really important for people to hear.
So, I appreciate you taking the time.
The Path to Interventional Radiology
Scott BennerThank you very much.
Sure.
Why don't we start with a little bit about how you I mean, let's go back all the way.
You leave high school, go to college.
What do you go for?
Scott BennerWhat's the process of of becoming a doctor, and and how do you land where you are now?
Aaron ShilohSure.
So, you know, I always wanted to be a doctor, and I, went to, Penn State, here in Pennsylvania and studied biology and premedicine in the, university scholars program, and now it's called Shrier's Honors College.
From there, I was fortunate enough to attend, the University of Pennsylvania Medical School.
And at that time, I wanted to be a brain surgeon, interestingly enough.
And I sat through a couple twelve hour brain surgeries and realized that though I loved it, it was too much for me in terms of time procedures.
Aaron ShilohSo I decided I was gonna go into general surgery, and when I finished my, medical school training, I started into general surgery again at the University of Pennsylvania.
In my surgery training, one of the places I had to go to every day, literally every day, was radiology and interventional radiology.
And as someone who grew up loving video games, I got to go down to interventional radiology, otherwise known as IR, and ask them to help out with different problems that we had as general surgeons.
And I literally was there every day, and I was like, wow.
This place is cool.
Aaron ShilohThey're doing some really amazing cutting edge things through tiny little pinholes, and it felt a little bit like watching them do it, like playing a video game in the human body.
And I was like, wow.
This field is new and and advancing medicine, and I thought, well, this may be what I really wanna do.
And so I transitioned from general surgery into wanting to pursue a career in interventional radiology.
Now interventional radiology has its own residency, but back then, it did not.
Aaron ShilohAnd so I ended up having to leave the University of Pennsylvania and go to Thomas Jefferson University also in Philadelphia and start a radiology residency.
And during my residency, I got into interventional radiology, and then then I was selected to be the chief resident at Jefferson in interventional in radiology.
I'm sorry.
And then I started my interventional radiology fellowship again in Jefferson, and then, you know, finished that as well.
And once I was done at Jeff, I took a job with, a private practice group in the Philadelphia area and quickly became the chief of interventional radiology for one of the largest private practice groups in The United States.
Aaron ShilohAnd we were doing some really amazing things.
And at one point, I was in charge of 15 doctors, multiple physician's assistants, and covering about 12 hospitals.
Scott BennerHow long ago was that?
Aaron ShilohThat was basically from 2003 to 2017.
Scott BennerOkay.
So in 2003, when you say we were doing some pretty amazing things, what did that mean back then?
Aaron ShilohSo there was a lot of things that we were doing that are things you don't know about.
It was actually fascinating.
I was watching the pit recently, and they actually referenced interventional radiology.
And we're always, like, in the shadows.
No one ever talks about us.
Aaron ShilohBut, you know, things like patients coming in with a bleed from their colon or from their gut, and we can go in through a tiny hole in an in an artery and find the source of bleeding and put a little metal plug in there and stop the bleeding Right.
Known as a GI bleed.
That's basic.
Biopsies, things like you many people need a thyroid biopsy or a lung biopsy or kidney or liver biopsy using CAT scans and ultrasounds and X rays to perform procedures on people.
One of the things that I was actually most skilled at and became the leader for my group is using my techniques to do minimally invasive cancer treatments, like ablations of liver tumors, lung tumors, kidney tumors.
Aaron ShilohSo instead of taking out kidney cancer, for example, you can put a needle in the tumor, hook it up to a machine, and turn it on, and watch the kidney cancer completely disappear.
From there, we had this other really neat thing where if people have metastatic disease to the liver or or liver cancer from cirrhosis, you can embolize the liver using different techniques, sometimes particles, sometimes chemotherapeutic agents.
And the thing that I really ended up up pushing forward at least in the community around Philadelphia was, radioactive bead embolization.
So you can actually put in small glass particles that contain or they can be made of resin as well, but small particles that contain a radioactive substance called yttrium 90, and that you can then impregnate tumors with radioactive beads, and they will then radiate tumors from the inside out.
So at that time, it was being done in only a handful of places around The United States when I first started, and I brought that to the, local Philadelphia area.
Aaron ShilohAnd over the years, did hundreds and hundreds of treatments on many, many patients.
Expanding Treatment Options: Fibroids and Veins
Scott BennerSo then how do you well, I guess we should list first.
What are all the procedures that you do right now in your clinic?
Aaron ShilohThat works with sort of the transitioning.
So then around 2000, actually around 2014, I opened up my own vein practice.
In addition to doing this other job, I was also one day a week running my own practice, treating patients with varicose veins, doing superficial vein treatments, you again, ablation and minimally invasive treatments.
And around 2018, I was offered an opportunity to go to the outpatient world and move my vein practice to someone's office and start doing some of the treatments that I do in the hospital in an outpatient office setting.
Unfortunately, that didn't work out for various reasons that are not relevant to this discussion at the moment, but we basically proved that you can do the same procedures that were done once in the hospital that were super complicated could be done in an outpatient office setting.
Scott BennerYeah.
Aaron ShilohSo then I eventually joined my current company USA Clinics Group around 2020, so now five years.
And at this group, we do treatments for varicose veins, for women's fibroids, an an embolization procedure where you kill the fibroids with small particles like I was describing in the liver.
And then we started doing a new treatment called hemorrhoid artery embolization, and, also, we do treatments.
I do treatments for patients with knee pain and osteoarthritis called the genicular artery embolization.
Wow.
Aaron ShilohI'd embolize people's prostates if they get enlarged, a very common problem, BPH, and then also some arterial disease, peripheral arterial disease.
So if you have a narrowing in an artery in your leg, you can open it up with balloons and stents.
So, basically, now I do vein treatments, treatments for fibroids, treatments for hemorrhoids, treatments for knee pain, prosthetic enlargement, and and peripheral arterial disease.
Scott BennerSo you're basically either capping something, cleaning, clearing something, or delivering something with the technology.
Is that right?
Aaron ShilohThat's about right.
I mean, you know, in vein disease, mainly, we're closing problematic veins.
In arterial disease, we're opening up arteries that are not the blood isn't flowing through them.
And then in our embolization procedures, like the hemorrhoid embolization, fibroid embolization, genicular artery embolization, prostate embolization, anything that's an embolization Mhmm.
Is a procedure where either particles, small particles, or metal plugs called coils are delivered via a small catheter to the area of interest to block the flow to that structure.
Scott BennerWhen we're talking about a fibroid, so if a female develops a fibroid, they used to just they just take them out usually.
Right?
So they now you're gonna go in there and do what to it?
Like, does it come out?
Does it get shrunk?
Scott BennerDoes it, you know what's the recovery time like?
I'm interested in that procedure specifically.
Aaron ShilohSo that's a wonderful question.
I could talk about fibroids for an hour as well, but the fibroid embolization is not a new technique.
That started in 1995 in Los Angeles, and I personally have been performing them since 1998.
Mhmm.
So a couple thousand in my, you know, in my belt.
Aaron ShilohSo to your point, most women with fibroids are treated, unfortunately, still to this day in The United States by hysterectomy.
There are 400,000 hysterectomies done in The United States every single year.
The vast majority of them are on patients with benign fibroid disease.
Some of them are for cancer, and those, of course, need to come out.
But for fibroid disease, you absolutely don't need to have, your uterus removed.
Aaron ShilohThe equivalent is, to me, is that historically, you know, years and years ago, if you had heart disease, what would happen?
You'd have your chest opened up.
You'd have triple, quadruple bypass.
We probably both know plenty of people who had open heart surgery.
We all now know that the standard of care is a minimally invasive approach.
Aaron ShilohSo most patients now can be treated through a catheterization of an artery and opening up the artery in the heart.
So in heart disease, we've moved to a less invasive treatment option.
In a fibroid embolization, we catheterize an artery either in the wrist or the leg, like the hemorrhoid embolization.
Scott BennerRight.
Aaron ShilohAnd we inject small inert plastic beads called embospheres into the fibroids.
The fibroids are benign tumors, and so they don't have to be removed.
And they will shrink just like you said.
They shrink I like to refer to it as like a grape into a raisin.
So they dry up and they desiccate.
Aaron ShilohSo in my hands, most fibroids shrink under after the procedure by about 70 to 80%.
So think of, like, a tennis ball going to a golf ball.
Scott BennerMhmm.
Aaron ShilohShrink, they don't completely disappear.
On rare occasion, the fibroids come out of the body, but, you know, these are individual things that we discuss with patients when we look at their imaging, their ultrasound or MRI prior to their procedure.
Scott BennerSo if somebody's having like a blockage or a urinary issue around a fibroid, it's possible that doing this to it would shrink it enough to maybe relieve the issue they were having.
Aaron ShilohOh, absolutely.
Yeah.
Most women with fibroid disease are in their mid forties.
The most common symptom women experience is heavy menstrual bleeding.
Many many women suffer from years with this problem because they don't want their uterus out.
Aaron ShilohThey don't want a big abdominal surgery, and they aren't offered any other options, and thus they don't know about it, and they keep suffering.
I have countless women.
I treated one yesterday whose hemoglobin was four, you know, normal being 12 to 15, And she's allowed to bleed down, bleed down, bleed down, get blood transfusions, iron transfusions, etcetera, etcetera, etcetera.
All because no one said, hey.
Maybe you want this procedure to stop this bleeding.
Aaron ShilohAnd so inevitably, at least currently, most of the patients arrive at my door through things like this, podcasts, social media, etcetera.
They hear about it.
They find out about it, and they come to us directly.
Scott BennerAfter the embolization, then the fibroid doesn't bleed any longer?
Aaron ShilohRight.
Scott BennerOkay.
Wow.
That's awesome.
Aaron ShilohFibroids that bleed so in fibroid disease, there it depends on the location of the fibroid.
Fibroids are classified in basically three separate locations, submucosal, intramural, or subserosal.
And depending upon the location of the fibroids determines the symptoms that they're having.
So I always tell women that fibroid disease isn't like real estate, you know, the famous quote, location, location, location.
So depending upon where the fibroid's located will determine the symptoms, not so much how big they are.
Aaron ShilohSo a big fibroid on the outside of the uterus on the front will squish the bladder and make women pee over and over and over and over again.
Every twenty minutes they feel like they have to pee, that same fibroid inside the uterus will give them heavy bleeding.
That same fibroid on the backside of the uterus will push on their colon and give them constipation or low back pain.
Low down and near the cervix will give them pain during sex, and on and on and on.
So depending upon the location of the fibroid, you know, determines the symptoms.
Aaron ShilohMany women have multiple fibroids and thus they come in with numerous symptoms leading and pain and pressure on their bladder, etcetera, etcetera, etcetera.
Some women's uteruses grow to as big as five months pregnant.
Scott BennerWow.
With a five now do you do imaging prior to the procedure, or do you do you find them during the procedure?
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Scott BennerNo major surgery, no long downtime, just a smarter outpatient option.
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Aaron ShilohNo.
Most women when they come in either have had an ultrasound beforehand or we do one on-site, and then as needed, we order MRIs to better evaluate the fibroids.
That used to be the standard of care.
We found that it doesn't change our management all that much.
So there are occasions where I get MRIs, and, they give beautiful pictures, and they really help me see.
Aaron ShilohBut when we do the fibroid embolization, we target the entire uterus.
So if you have one fibroid or you have 25 fibroids, it's irrelevant.
They all get treated at once.
Scott BennerYeah.
And I guess the million dollar question here, is it covered by insurance?
Aaron ShilohAbsolutely.
Awesome.
This procedure has been validated.
Unfortunately, you know, some procedures like we're gonna discuss are validated, but just quote, unquote, not enough for certain insurers to cover them.
How they make this decision is, not something I'm a can really sort out, but my gut is that it's a financial decision of more than anything else, and the type of studies that are being asked for or required are nearly impossible to get enough data on.
Aaron ShilohBut UFE, since it's been around for thirty years, has had numerous studies.
Scott BennerI'll talk a little more about that in a second.
What's the recovery time from the the fibroid procedure?
Aaron ShilohYou know, the UFE is actually a really amazing procedure now.
I do them in an outpatient basis.
And because I do a lot of them, they take about twenty minutes to
Scott Bennerdo.
Okay.
Aaron ShilohThe procedure's painless, done with sedation, which, you can speak to a little bit about.
But the recovery is a little bit more intense.
It it does take a good week to recover the first couple days.
Scott BennerThat's pretty great, man.
I I can't I can't tell you how happy I am to have met you.
I'm gonna go through a couple of the other ones before I get to me.
Varicose veins are is that is that a is that an insurance thing, or is that considered cosmetic?
Aaron ShilohI'm glad you asked that.
So medical vein disease treatments are covered by insurance.
It's no different than heart disease.
It's an actual structural problem in the valves in your superficial veins.
It's a very common misconception, not just by patients, but by primary doctors and everybody that it's just it's just cosmetic.
Aaron ShilohAnd I can't tell you how many patients who have suffered for years with varicose veins on their legs and swelling and discoloration who are not sent by their primaries because I'm sure they suspect that it's just cosmetic.
And so vein disease is a medical problem.
There's also a cosmetic problem, and we treat that as well.
But medical vein disease is in fact a medical problem.
Scott's Personal Hemorrhoid Struggle
Scott BennerWell, so the way I found you and, this is gonna be I don't It's not gonna be tough for me because I've practiced by talking about it in another episode.
But, you know, you and I have talked about it and I've I've talked about it here.
It's interesting.
Like, if if I would have told somebody that periodically, two, three times a year, almost randomly, I started bleeding uncontrollably for a number of hours and I couldn't stop it until it decided to stop, people would be horrified by it.
They'd, you know, they'd have a ton of compassion.
Scott BennerWhen you tell them that it comes from, you know, your rectum, then all of a sudden it's funny, you know?
Like, oh, you have hemorrhoids.
And, for my you know, a lot of my adult life, that's kinda just what I thought.
I thought, oh, I have hemorrhoids.
Like, you know, and I did all the things.
Scott BennerAnything you can think of that somebody tells you to do for it, I've done it.
And I mean from, like, simple creams and salves to, like, you know, baths and Epsom salt and significant dietary changes, significant weight loss.
Like, seriously, you Google how to treat it, I've done it, and it didn't change.
Now for perspective and because we're talking about it here, I I'm gonna tell I could tell any number of of stories, but one that I think the people listening will maybe appreciate and have some connection to is that I probably have spoken at the same event in Orlando six or seven years.
And about three or four years ago, I got done full day on my feet, you know, talking and moving around.
Scott BennerBlood pressure was probably, you know, up most of the day and everything.
I got back to my room, had some dinner.
I was fine.
Decided to jump in the shower late at night, got in the shower, relaxed, and looked down, and I was just bleeding.
And it was significant.
Scott BennerAnd I stood in the shower panicked.
I did not know what to do.
I was in a hotel room.
I thought, I can't get out of the shower.
I'm bleeding.
Scott BennerWhat do I do?
Finally, I realized because I was standing, this was never gonna stop.
Got out of the shower, just to be candid, grabbed a wad of toilet paper, you know, jammed it in my up my and, like, went over and laid on the floor because I didn't know what else to do.
It's about 11:00 at night, and I think the bleeding stopped around 3AM.
And I was like, I had to get up in the morning and get on a plane.
Scott BennerAnd I can't even begin to tell you about the fear and the panic about leaving that hotel room or getting on a plane or all that other stuff.
Right?
But once the bleeding stopped, it kinda stopped.
Then you get home, and then the other stuff comes.
Right?
Scott BennerThe the the small bits that nobody talks about.
Like, you're scared for it to happen again.
So you start restricting how you eat, how you move.
I don't wanna stand up too long.
I guess I'm just a person who has hemorrhoids, this is how they bleed.
Scott BennerYou don't wanna tell anybody.
You know?
It's you know, even it's embarrassing to tell your wife or or anybody, really.
And, these poor people that hire me to come to this event, they're gonna hear this and be mortified.
That has happened to me three times in that hotel room.
Scott BennerIt has happened to me on the cruise.
I took my listeners on last year.
It has happened to me in my house.
It has happened to me in a lot of places.
So if you see me out doing a speaking event, I probably haven't eaten for three or four days before that just because I don't wanna put myself in a position where I'm standing, talking, moving, and then need to use the bathroom.
Scott BennerIt's been significantly impactful on my life.
When I lost weight and it didn't affect it, I have to be honest with you, I was lost.
I thought, well, that's it.
This is the rest of my life.
And I started looking into the surgery, which sounds barbaric, the surgery that is commonly done for this problem.
Scott BennerAnd it's the only thing that stopped me from going after this.
It did not seem like the outcomes would be good.
You know?
And then one day, even though I had looked over and over and over again online, I never quite could find it.
I asked chat GPT one day, is this the only thing I can do?
Scott BennerAnd it said, no.
You could get a a hemorrhoid embolization.
I was like, right on.
So I looked online.
You're, like, ten minutes from my house, which made me bang my head against the wall.
Scott BennerYou know?
Came and saw you.
You asked me about my symptoms.
I remember you saying you are a perfect candidate for this, and then I went home to find out that my otherwise very good health insurance didn't wanna pay for it.
It was the demoralizing to to say the very least.
Scott BennerCandidly, that everybody understands, the company that you work for in exchange for you being on the podcast today gave me a a decreased rate, But I did end up still paying cash for the procedure, and it it's still a a hefty sum for for a normal person to pay.
But it seemed that important to me.
Can you tell people when you examine me what what it is you saw and, maybe explain to them why I mean, we call them hemorrhoids, but I don't know if that's a great way to categorize what what what was wrong with me really.
The Science of Hemorrhoid Embolization
Aaron ShilohRight.
Well, first of all, I mean, I think and you mentioned some of these things to me before, Scott, but I didn't know the extent to which you had suffered, and, you know, it's interesting what you're describing because this procedure really began as a treatment primarily for, as I mentioned to you, GI bleeding.
So you probably in the moment, and others might have gone to the emergency room at the time when you were having that fairly significant rectal bleed, and they just call you.
And we used to get called like that day and night.
GI doctors came on board and started trying to do things with a scope, but you can imagine your colon or rectum is full of blood.
Aaron ShilohHow can they see anything?
And so then years of of of practice, radiology and interventional radiology developed techniques to deal with that, including figuring out where you're bleeding from, doing a tag red blood cell scan or a CT angiogram, and then saying, oh, you're bleeding from the right colon, the, know, the small bowel, the left colon, or in this case, the rectum, and going in there with a catheter, finding that source of bleeding.
And when people are actively bleeding, we say they're extravasating or you can see literally as you inject IV dye into the artery that you suspect, you can literally see it pumping into the cone.
Okay.
And you then direct.
Aaron ShilohSo this is where I talk about it.
It's like a video game.
I have a monitor.
I have a foot pedal, X rays, and I'm watching the monitor as I'm using my fingers to manipulate a tiny wire and catheter.
And when I say tiny, they're the size of, you know, one millimeter or so in diameter, the microcatheters, to the source of the bleeding, and you plug it.
Aaron ShilohAnd it's like turning off a faucet.
It's really amazing, heroic, you know, feels lifesaving and all that, like, TV show.
Scott BennerYeah.
Aaron ShilohSo doctors like myself determined, hey.
If we can do this under extreme circumstances, why not treat people like yourself who are having intermittent yet significant hemorrhoidal bleeding?
And that's how this procedure began to be developed mostly in Europe and South America where it's easier to get things done than in The United States where, you know, you have to jump over 50 hurdles before it's somehow approved by some nebulous entity without clear guidance as to what guides their decision making.
Right.
Not enough evidence.
Aaron ShilohNot enough evidence.
Not enough evidence.
And as you pointed out, there are other treatment options.
The most extreme, which you probably would have been offered is the definitive for mortal surgery, which though you're relatively healthy guy, would have been a big deal.
And the surgery itself, you know, let's say you get through without an issue.
Aaron ShilohThe recovery from those surgeries is really, really, really difficult, and that's why lots of patients have been steered away from it either from their primaries that even colorectal surgeons are semi reluctant to do it because they know, god, this patient's going to be in awful, awful, awful pain, not just for a couple days, from weeks and months and months.
And many patients I've spoken to over the last five years who've had that surgery and other people that I know personally will describe it as literally the worst experience they can go through in their entire life.
They wouldn't wish it upon anybody else.
So for that reason, people have developed less invasive things like rubber band ligation, like injections, like a procedure that's similar to what we do, which is the Doppler assisted ligation.
But that's all because no one wants this definitive surgery, and so that's how this procedure sort of came to be.
Aaron ShilohIt is really unfortunate that in your particular case, your insurance did not
Scott BennerIt was correct.
Aaron ShilohDoes not cover it.
There are others that do, and we work very hard to try to change the narrative, and maybe things like what we're doing here will help with that, but it's and the patients will advocate, and you'll advocate.
Scott BennerBut Well, I hope so.
I'll tell you.
I mean, listen.
You're getting a a slightly lower prices.
You know, I'm happy to take that, but I am taking my platform and talking about this because you have no idea.
Scott BennerLike, I started thinking, like, I don't know how many people are going through something like this cause I never would have told anybody.
Right?
Like, had this not come up in in you know, to be completely candid, I would have never said this out loud.
And I've tried the banding twice.
I've shared this on the podcast before, but I'm gonna put it here for each.
Scott BennerI've tried the banding twice.
The banding was, like, presented to me as, like, oh, don't worry.
It's a quick office procedure.
It's not a big deal.
Blah blah blah.
Scott BennerWell, it it was a big deal when the guy pulled out a speculum.
And, you know, and I had my young like, my kid was still in a car seat the first time I did.
This was, twenty four years ago I tried this the first time.
Right?
Banding works, incredibly painful, and, you know, you're good, and then you're not again.
Scott BennerAnd then it's going to what I think I've learned going through this procedure because I tried that banding twice and I was starting to think about doing it again.
But I think what I've learned and this is really I I can't believe.
I'm having trouble saying this out loud.
Listen.
If I'm saying this wrong, you'll make it more tactical for me.
Scott BennerBut as soon as you were done the procedure, I was only out of that room for a couple of minutes.
You walked over to me and asked me how I was, and I said, all the pressure in the lower part of my body is gone.
I didn't realize I was living with so much pressure.
And then I even it happened so quickly that I thought I must be making it up.
You know?
Scott BennerBut now we're I don't know how far are we out now from having it done.
Maybe I'm a month or six weeks out of having it done.
That has been completely true the whole time.
There was pressure inside of me constantly.
I'm imagining in my mind it's from extra too much blood being in a place.
Scott BennerRight?
Aaron ShilohRight.
Scott BennerNow my question is, how far up are the things you I can't believe I'm gonna ask you this way.
From the hole, how far up was what you did?
Aaron ShilohSo that's you know, maybe this is a good opportunity to segue.
You did ask me what it looked like, and I should segue a bit into why the banding doesn't work, and what is the pathophysiology and and the actual root cause of the hemorrhoidal disease.
Why?
Why do I have this problem?
You know, you you know, and women who give birth, they get hemorrhoids and others, but you're a man.
Aaron ShilohYou didn't give birth.
You have no specific reason for having it.
And so what is the reason?
Now I can't tell you why, unfortunately, you're afflicted by this problem, but I can tell you what the problem is.
So I'm gonna try to answer several questions at once.
Aaron ShilohIn your particular case, when we did do the anoscopy and look, we see internally a very vascular vein bubble or a hemorrhoid.
Now why is it there?
Okay.
So to your point, you have your anus, then above that, you have something called the dentate line, which is where the sensitive area of the butt is and the less sensitive or desensitized area of the rectum is.
In that area, just above the dentate line, there's a tubular rounded area of tissue called the corpus cavernosum recti.
Aaron ShilohBig word.
K?
But what that is, it's a very vascular bed fed by arteries from the superior rectal arteries.
So they are derivatives of the artery called the infamous entire artery, which feeds the rectum and sigmoid colon and also part of the descending colon.
Alright?
Aaron ShilohThere won't be a quiz for anatomy.
No.
Scott BennerI appreciate this.
Thank you.
Aaron ShilohThere are arteries called the superior rectal arteries.
Now they feed that area, and inside that area are large venous lakes.
And so it can swell and decompress to assist in the pooping mechanism.
The analogy that I tell patients, I may have told you, is in the male body, there's another corpus cavernosum.
It's in the penis, and it's what allows men to get an erection.
Aaron ShilohSo men get simulated, that area fills with blood, that tissue type fills with blood, and you get an erection, and then later it decompresses.
Now that same type of tissue exists in all humans, men and women, in their lower rectum and fill swells and decompresses.
Those venous this is my best understanding of this, and the way that I think about it is those venous channels are like bricks.
And in a brick house, you have bricks and mortar.
The mortar is what holds everything together.
Aaron ShilohSo in that area, the mortar is a matrix of connective tissue that that is keeping that structurally intact.
In patients with hemorrhoidal disease, that matrix has broken down.
And because of that, there's a swelling that takes place in the venous side, and we see when we inject IV dye to do the imaging prior to the embolization, we see a lot of blood flow into that area.
Too much blood flow.
Just an increased vascularity.
Aaron ShilohSo what you really are having there is like an arterial venous malformation.
So it's fed by big arteries, but the end outcome is a vein.
So the other analogy that I probably told you and I tell patients too is that the hemorrhoid is like looking up in the ceiling and seeing a brown spot develop a wet mark in your ceiling.
Right?
So you don't call a painter to call them and say, hey.
Aaron ShilohI don't like how that looks.
I'd better paint that up.
Of course not.
We both know that if you do that, it's just gonna happen again.
So that's what banding does.
Aaron ShilohBanding literally paints over the spot or replaces the ceiling tile without getting to the root of the problem.
So what we're doing is we are getting to the source, to the root cause of the increased vascularity to that segment of rectum by putting that catheter in and directing the microcatheter into all four superior rectal arteries and blocking them with metal coils to reduce the pressure.
And by depressurizing it, it allows those venous side on the vein side to decompress.
It's no longer inflated.
So that hemorrhoids like a balloon that you inflated with your lips, and it's constantly being inflated by that pressure.
Aaron ShilohAnd as soon as you cut that off, that balloon deflates.
And I think that's why in your particular case, you felt a real rapid decompression because that's what I did is I decompress that those balloons.
Now not every patient gets an immediate effect like you do.
That's a fantastic effect, but you had a really, really, really chronic problem years and years and it developed.
You had many vessels very vascular, and as soon as that was cut off, they it was depressurized.
Aaron ShilohSo you felt that, and then to my understanding from speaking to you before that you're no longer bleeding, and and I am I'm just thrilled for you because I know from talking to patients like yourself and fibroid patients who have to worry about bleeding through their clothes, and when am I gonna bleed again, and not knowing it.
It's an overwhelming mental mentally exhausting life to lead when you can't just relax and be like, well, I can just live my life.
And and to free you of that is, you know, for me personally, a very rewarding and satisfying thing to be able to say, look, you know, just you don't have to exhaust you.
I'm how much mental energy did you spend on any given day worrying about this happening?
And when it did happen, the thoughts that would get
Scott Bennerinto You have no idea.
The the kind of machinations that go on in the background trying to obscure it, keep it from happening, get in front of it, stop it once it's happened.
Happened to me once at the airport on the way out to somewhere.
It's happened to me in my home.
It's just it and, you know, you could say, like, well, what brings it on?
Scott BennerI don't even know.
You know, it's not a change in my diet.
It's not it's I I can tell that if it's once it's a problem, having been on my feet for a while prior to that added to it, and I think talking and keeping my heart rate up all day also had something to do with it.
Like, if I had to, like, break it down, but no, you you're absolutely right.
I have had absolutely no bleeding since you and I got together.
Recovery and Navigating Insurance
Scott BennerThe procedure itself, I always think about when I first met you, you're like, I'm sorry.
Like, it takes so long, but it took, like, forty five minutes, I think.
Like, it didn't take very long at all.
I remember, I think, having a fairly cogent conversation even with the nursing staff.
Like, I wasn't even out all the way when you did it.
Scott BennerMy recollection of it was as as funny as it sounds is that, you'd go, you know, I guess you were in there with the wire, you'd you'd inject a dye to look around to see what you were doing.
I felt like I got very warm, you know, in the area where you injected the dye.
You did the you know, you did it.
You did it.
You did it.
Scott BennerAnd then I remember maybe the even the only part of it that I could even talk about being unpleasant might have been, like, at the end, you actually have to embolize where you went in with the wire.
Aaron ShilohYeah.
We have to close the site of the artery.
Scott BennerTo call it uncomfortable, I don't remember.
I can't even quantify it.
But in that moment, I thought, oh, that pinched a little.
And then that was that was kind of like, you know, then it was it.
I was outside, you know, on my I think I was out of there in, an hour, to be perfectly honest with you, you you know, after you were done.
Aaron ShilohYeah.
Scott BennerAnd I have not had any issues.
I'll tell you beyond the pressure being gone up inside.
That's the reason I asked you how far it is up inside where the pressure was because I didn't understand that's where the bleeding was coming from because I actually also have an external hemorrhoid.
And I think that the pressure from the inside is what created the hemorrhoid at the external area.
So you and I talked at my at my follow-up that we're just gonna wait some time and hope that my body kinda reforms and reshapes now that that pressure is not there anymore.
Scott BennerAnd it is much better already because there's nothing behind it, like pushing constantly.
You know?
But other odd little not odd, but even the shape of my stool is normal now.
And I didn't realize it really wasn't before.
And now as I think about it, it was being sent through a Play Doh fun factory trying to get out instead of, like, you know, coming out the way it was supposed to.
Scott BennerI can't tell you how awesome it is.
I would 100%.
I'd I would've I'd pay the whole amount.
Like and if you told me it was gonna fail in twenty years and I had to come back, I just start saving money now because it changed my life in a split second.
Really did.
Aaron ShilohWell, hopefully, listen.
Hopefully, it won't.
I mean, I in all honesty for myself, I've learned so much over the last five years about the pathophysiology of this particular disease.
If you asked me twenty years ago if I'd be putting in speculums when I did IR, I probably would have been like, no way.
But, you know, it it is helpful and instructive.
Aaron ShilohAnd now seeing patients, seeing them later, and then learning more and more about the variations in the anatomy.
And then the one thing that we've done in our group, myself and the other docs who do this primarily in New York, is we are refining the technique by discussing it.
And I think amongst the group of doctors in my company, there's probably nobody maybe in The United States doing as many hemorrhoid embolizations as we are.
So we have a large amount of experience now, and we have sort of refined the technique.
And one of the things that we're doing as not only are we looking at the superior rectal arteries, which are the main supply, we also look at sort of this the side doors that supply that area, and they're called middle rectal arteries.
Aaron ShilohAnd it used to be that we'd no one touched those, and then it was, like, only if the treatment failed.
And now on every single case, I did one today where I thought, oh, I did a great job on the SRAs.
Looks great, but I'm gonna go and look.
And on the left side, there was nothing.
I mean, there was nothing to talk about.
Aaron ShilohOn the right side, a huge artery feeding that area in other docs and other places.
And maybe five years ago, I would have not even bothered with it.
And today, I went in, and I know this guy's gonna do fantastic.
There's just a lot.
It's a very complex area.
Aaron ShilohThere is no two people who are the same arturally in the rectum.
You know, sometimes I do four arteries.
Sometimes I do seven.
Once we're done, I think now that we've refined the technique to where we're at, the success rate, particularly for patients like yourself with chronic internal hemorrhoids that are bleeding is really, really, really great.
I mean, I'd say ninety to a hundred percent.
Aaron ShilohIt it's challenging in that you can't block every artery because if you do and if you completely block it off, that area will die.
We don't want that, obviously.
So we have to be cautious to some degree that we can't overdo it.
We can't overcook it.
So, again, because of our joint experience and my own personal experience now, I think we've refined it.
Aaron ShilohAnd so for patients like yourself, it's really an amazing, amazing, amazing treatment and really confident it helps people.
Scott BennerYeah.
No.
I I can't again, I can't tell you how happy I am.
I got an email from a woman after I mentioned on the podcast the first time, and she said, oh, my poor husband just had that surgery, and it really left him in a bad way.
I wish I would have known about this before.
Scott BennerAnd I thought, I'm doing the right thing talking about it.
So, you know, hopefully, the Internet will leave me alone a little bit.
You know what the other thing is is that this podcast is mainly about type one diabetes.
Right?
And it's people have autoimmune issues, and a lot of them autoimmune issues are invisible to other people.
Scott BennerAnd I thought, boy, this really does fit in with that because, you know, in a million years, I've done an amazing job of hiding this from people.
And it is no different than as far as the impact on you, it's no different you shouldn't be hiding anything.
You know what I mean?
Like, it's tough.
Like, walk through the house.
Scott BennerWhat's wrong?
Nothing's wrong.
I'm fine.
You know?
Are you okay?
Scott BennerI'm fine.
I'm fine.
You know, you you appear to be in a bad mood for a second.
You're not in a bad mood.
You just you you know, you just thought you just bled out in the bathroom, and you're you're wondering if you're gonna pass out now.
Scott BennerAnd everybody in the apartment, you know, in the house wants to know, like, it's dinner time.
Do wanna eat?
I'm like, no.
I'm not hungry.
And then, you know, what's wrong with him?
Scott BennerAnd you just you don't say anything because it's just it was embarrassing.
I'm not embarrassed by it anymore, and I can't believe I it it took AI to to send me in the right direction.
Aaron ShilohIt's a it's a shame, Scott.
You know, I think that we need to do a better job, myself and others.
We're doing the best we can to educate the community, the primary doctors, you know, that there are these things.
We actually are experts in orphan diseases.
You know, to your point, things that people suffer from in silence, fibroid disease, they women bleed and become anemic, and they're allowed to do so.
Aaron ShilohAnd they a lot of women won't talk to each other or to their doctors about how bad their fibroid bleeding is.
So I think, you know, hopefully, we can remove the stigma and the shame from it and and get more patients treated and not have them feel that same, you know, shame of what's going on.
They don't have anyone to talk to.
You know?
And listen.
Aaron ShilohThe treatment's not for everyone.
I just wanna be clear.
I mean, I get patients who come in with a single painful thrombosed, which is clotted external hemorrhoid that have a hard time sitting, and those patients probably don't need this.
They need supportive care.
We give them medications and do what's necessary for those patients.
Aaron ShilohBut for many patients who have internal hemorrhoids, which is a large number of people Yeah.
And those especially that are bleeding, we know how vascular those are.
They are prime candidates to have this minimally invasive treatment done and, you know, completely change and improve their lives.
Scott BennerIt's fantastic.
And it felt like I it felt like I went to lunch and came out.
Do know what I mean?
Like, it it I wasn't in a hospital or, like, it just I, you know, I went into the front of your clinic.
They took me in the back, got me set up.
Scott BennerYou said, hey.
I'll be right there.
You were working on somebody else.
You I think you were doing someone's fibroids, honestly.
And and you said, hey.
Scott BennerWhen they come out, you know, you'll be next.
And they cleaned up the room and brought me in, and I I felt like I was home, like, two hours later.
It was crazy.
Yeah.
You know?
Aaron ShilohYeah.
You know, moderate sedation is what we've been what we use.
I mean, to your point, some patients are sleepier than others.
The you know, because the fibroid embolizations take twenty minutes, those patients tend to remember nothing.
Because, hemorrhoid embolization can take forty five minutes to an hour depending upon how many arteries are done.
Aaron ShilohYou know, sometimes patients are a little bit more awake, but the beauty of it is that the procedure itself is not painful.
You know, the warmth that you experience during the procedure is from the injection of the IV dye.
Right.
I myself have experienced it.
I've had CAT scans for other reasons, and even if you get an IV injection of IV dye in your arm, it makes you feel warm in your pelvis and like you peed yourself.
Aaron ShilohSo when you're directly injecting the dye into that area, it definitely feels warm.
So that's very common, but from a painful standpoint, I think you would attest that it's not a painful procedure.
It's all done using image guidance, tiny little hole, and what you felt was me probably holding pressure after deploying a device to close the artery.
Right.
We can actually do the procedure from an artery in the wrist, which means that you don't have to have your groin access.
Aaron ShilohI'm still favoring the the leg, but because of various factors, there's, different shapes of catheters that the groin lets me have more options.
Scott BennerMhmm.
Aaron ShilohWhereas the wrist, you're stuck with one type of catheter.
If it doesn't work, then you have a problem.
Scott BennerListen.
There was bruising at the site, like, that but that was the extent of like, you would have not known.
I listen.
I came home.
I ate something.
Scott BennerI took a nap.
You know, I felt, you know, to say pain is even wrong.
Like, I think I took Advil for or Tylenol for a day or two just for the local, like, I don't know Right.
Soreness at at where you went in.
There was some, you know, there was some bruising, and the bruising was gone in a couple of weeks.
Scott BennerThere was this one thing.
I can't believe I'm just gonna say this to you, but I'm going to anyway.
I haven't had a chance to ask you about this because it it occurred to me after I I met with you as my follow-up.
Is this common after something like this?
Gosh.
Scott BennerI can't put I'm gonna look away from you when I say this.
Randomly, at least a dozen times, the head of my penis has gotten very warm out of nowhere.
Almost like there was, like, more blood flow down there.
Is there anything about what we did that would change it?
It stopped now, but it happened for a few weeks in a row afterwards.
Scott BennerAnd I'm wondering, is there anything about changing blood flow that could have changed that feeling or that it's didn't I guess that's what I'm talking
Aaron ShilohIt's possible.
Look.
I'd have to rereview your particular case because I don't have it memorized.
Scott BennerRight.
Aaron ShilohBut I think I embolized at least one or both of your middle rectal arteries.
The arteries that supply that area are also very, very close to the arteries that supply the penis Mhmm.
The pudendal artery.
And so it is possible that by reducing the flow there, it increased the flow elsewhere.
And so there is a possibility that by shutting down one spot, more flow went in another spot.
Scott BennerRerouted somehow.
Yeah.
Aaron ShilohSo there is a possibility because those arteries the the superior rectal arteries are entirely for the rectum.
They come from the arteries to that area.
Right.
The middle rectals are derived from arteries that in also, like I said, near arteries that supply the skin inside your groin and, of course, you know Mhmm.
Some of your your penis testicles, etcetera.
Aaron ShilohSo it is possible.
I haven't heard that particular
Scott BennerWell, should have been just somebody sitting else brings it up.
Maybe they just don't wanna tell you.
Aaron ShilohMaybe they didn't wanna say.
Yeah.
Yeah.
But it is it is possible.
Scott BennerInvoluntary wreck.
It's nothing like that.
It's just it just would get warm and then stay warm for ten seconds and then go away.
And I'd be like, this is interesting.
Is this gonna happen forever?
Scott BennerBut it just it stopped, and and doesn't happen anymore.
Aaron ShilohWell, I'm glad it stopped.
I I I I'll have to think about it more, and I guess, you know, at some point, I'll get back to you.
But I and what I'm what you're suggesting and my origin my initial thought is what I just mentioned is it's just some redistribution of flow.
Scott BennerWell, you'll be happy to know that two different AI models agree with you.
It's because that's what that's what I I didn't wanna bother you, so I just asked there.
Aaron ShilohYeah.
Scott BennerYeah.
Is there anything that we're leaving out or anything we're not telling people?
Like, I wanna make sure they understand if they have this specific issue, how impactful I think that what you do is.
And I I just wanna make sure we feel like we've covered it.
Aaron ShilohThe only thing I would say is so if you wanna come in and be evaluated, whether it's me or someone else, number one, not all rectal bleeding is hemorrhoids.
So let's just make that clear.
Mhmm.
So one of the things that we're very careful about is not to make assumptions.
Most of the time, particularly in patients who are of an age where colonoscopy will be warranted, if they come in and say, like you said, I'm bleeding a ton, and I say, have you had a colonoscopy and they're 55 years old?
Aaron ShilohThe answer is no.
They will I will not do anything until they get a colonoscopy.
Not to say that they don't have hemorrhoids.
It's very common.
And even if I did an anoscopy and I found a hemorrhoid, I don't like to make assumptions.
Aaron ShilohYou can certainly have two problems simultaneously.
So unexplained rectal bleeding and change in bowel habits should be evaluated for, you know, colorectal cancer.
Number one.
I just wanna make that clear.
Not every bleeding is hemorrhoidal bleeding.
Aaron ShilohThere's other problems.
Scott BennerRight.
Aaron ShilohOnce that is excluded, then we can focus our attention on the hemorrhoidal problem.
So if a patient as far as, like, what's a consultation look like, if you were to come to me as a new patient like you did, I would would like to see a recent colonoscopy report.
So let's say you had one in the last year or two.
It showed no problems, but internal hemorrhoids.
You're cleared.
Aaron ShilohIf on the other hand, you haven't had that, what we will usually do is do an anoscopy, which is basically, as you pointed out, a small speculum.
It looks like a piece of plastic that you can insert into the rectum.
It's only about as this width and length of a finger.
So for me, it replaces the rectal exam.
I would rather see with my eyes than feel with my finger because I think I have a better sense as to what's going on.
Aaron ShilohSo we do that, determine if you have a hemorrhoid, if you have another problem or not, and then we can discuss what options there are.
Sometimes patients should have some what's called conservative management, change in their diet, medication before we proceed immediately with this particular treatment.
There are patients like yourself who I know no amount of steroid cream or suppository is going to change their outcome.
But there are people who it's their first episode of hemorrhoidal problems.
It may not be in their best interest to jump right in to something to fix it.
Aaron ShilohThey may get relief with something else.
So there are some patients for whom I prescribe medications to try first to see if I can alleviate their issues just medically conservatively without immediately diving into doing something.
So just to be clear, there are other things that we need to think about.
We don't immediately make assumptions.
But if we get to the point of saying you have chronic internal hemorrhoids, your bleeding is, you know and many patients are like you.
Aaron ShilohThey failed rubber band ligation.
There there are really very few options.
And as you pointed out, when someone messaged you about a friend who or husband who had the surgery, it's it's no joke.
It's really no joke.
And compared I know you might have had a little hematoma or bruising in your groin, which doesn't happen to everyone, but it's unfortunately happened to you.
Aaron ShilohBut it's it's, a minor consequence relative to you.
I'm sure you did test to the change that's then happened in your life after that.
Scott BennerListen.
I stood up in a paper gown and hugged you.
I I and then I've I've I'd do it again.
I'd come if you called me right now and said you needed somebody to run your trash out, I'd I'd come do it for you.
So I I can't tell you how how thrilled I am.
Scott BennerI mean, just to not think about it anymore or or to even to be able to tell you that for the last six weeks, I just go to the bathroom.
And I'm not there forever, and it's not like you're pushing something around something else than hoping that it doesn't explode afterwards because it's really what was happening.
You know?
I was on all kinds of, like, you know, taking, like, softeners and stool.
I was trying everything I could to just avoid when it was gonna happen, and I just I couldn't tell listen.
Scott BennerI I you know, I'm I'm gonna I'm gonna make an ad for you and put it in here because I appreciate it so much.
But where, would you want people to go?
Is it a website, or how would they find you?
Aaron ShilohSo yeah.
I mean, there's many ways to find us.
You know?
Number one, we're if you just type in USA hemorrhoid centers, it it should be the first thing to pop up, though.
I just think it's important that we get the word out there, Scott, and that we, you know, find a way not just to educate patients, but but primary doctors.
Aaron ShilohSo I hope that yourself, and I'm hopeful that some of my own other patients go back to their primaries and say, hey, man or woman.
What excuse me.
What's up?
I I wish that, you know, you had thought about this and sent me to this doctor or someone like him sooner.
Yeah.
Aaron ShilohOr why did I have to suffer for years this way?
Scott BennerYeah.
You were very clear earlier, but I'll say that, you know, it's if you go you know, I'm gonna use the fibroid thing as an example.
By the way, all those fibroid questions came from my wife, so you might be meeting more people in my family.
You really gotta do your your your diligence and and figure out what's best for you.
As far as this internal bleeding from this these hemorrhoids go, my experience has been nothing but positive, and and I can't tell you how happy I'm I did it.
Scott BennerAnd and I really do appreciate you taking the time to come on and talk about this.
Aaron ShilohThat was I appreciate that a lot, Scott.
I was just telling someone the other day that, you know, I feel like I'm I mean, I could do the math, but I'm, like, 70 to 80,000 procedures in.
I should probably be glowing in the dark at this point, but I'm not.
And, you know, there is something to be said, and especially in this particular field with the hemorrhoids, experience does matter.
I know just speaking for myself, I feel so much better about it now than I did five years ago.
Aaron ShilohAnd like we discussed, you know, in the hospitals, we do some other rather complex things as well.
And to be able to do these procedures for people in an outpatient setting without the hospital, and it's an I mean, I know you had to pay some out of pocket, but you can only imagine what that cost would have been like inside a hospital with the amount they charge.
So it's an order of magnitude.
You could have added a zero to the number because that's how it works.
You know, everything there is exponentially larger.
Scott BennerI was stunned that my insurance company told by the way, Cigna, go to hell.
I was stunned that Cigna told me that and apparently, I it was maybe the only major insurance company that wouldn't have covered this procedure for me.
Lucky me.
But whatever.
So Cigna said to me, well, the next time the bleeding happens, just go to the ER, and they'll embolize it.
Scott BennerAnd I went, yeah.
Somebody who doesn't know what they're doing.
And it was like I was like, why and I said, isnt that gonna cost you more money than if I just go let doctor Shiloh do it?
And everyone I spoke to along the way said yes.
They all agreed with me.
Scott BennerLike, nobody was like, oh, no.
You're crazy.
They were all like, yeah.
It's gonna be cheaper if he does it.
It you're gonna have somebody who's more, you know, practiced at it, but this is what we'll cover.
Scott BennerSo next time you bleed, run into the ER, you know, and yell help me.
And I was like, I
Aaron ShilohThe only problem and that that's legit.
I told you you could have gone to the ER, but here's the rub.
With hemorrhoidal disease, the problem is it isn't actually as much as you were bleeding, it's not an arterial bleed.
Arterial bleeds are really brisk and are life threatening.
Scott BennerMhmm.
Aaron ShilohAnd so what would happen is you'd go to the ER, they would try to find the bleeding.
And if we and when when the way that we treat GI bleeds is if we do not see the active pumper blood coming, like, pumping out Mhmm.
We don't embolize.
Right.
Because one of the unfortunate things with GI bleeds is that they're intermittent, and they're off and on.
Aaron ShilohSo number one, you could have walked into the ER.
By the time you were seen, by the time you got back, by the time they called IR, by the time they came in, hours passed, hours passed, hours passed, you stop bleeding.
They show up, oh, we can't find it.
Or on top of that, as I said, it's a vein, not an artery.
So they would never have found this source of bleeding anyway, and you would have left having been through all that, having undergone a procedure, the bleeding would not have been found.
Aaron ShilohIt would have cost the insurance company $50,000 for your ER visit, the testing, the procedure, yada yada, and all to end up in the same place again, which is the fallacy in all of this.
Scott BennerYeah.
And the same exact spot, by the way, is is hopelessness and bleeding.
And so I just once I found you, I said, I don't care what this takes.
I'm doing this.
Like, I ended up a serious conversation with my wife.
Scott BennerI was like, look.
The insurance company isn't gonna pay for this.
I'm like, what do you I'm doing it.
Like, we have to figure this out.
You know?
Scott BennerAnd she's like, well, Merry Christmas.
And I was like, awesome.
Aaron ShilohI do wanna mention though that there are other insurances that do Yeah.
Cover this procedure, which is also a little problematic.
I mean, first of all, Medicare, which is obviously one of the the largest insurer in The United States.
But there are others I'm 99% sure.
I'm trying to remember if Aetna does or doesn't, but like other Blue Cross Blue Shield currently does.
Scott BennerYeah.
Aaron ShilohYou know, I think United does.
I mean, we're talking about the big insurers.
United, Blue Cross Blue Shield.
I'm I'm not a 100% sure about Aetna.
I'd have to recheck that, And it doesn't I don't want your listeners to believe that all insurance doesn't cover it.
Aaron ShilohIt absolutely it the it's dependent on each individual.
Scott BennerI've had three insurances as an adult an employed adult, and two of the three of them would have covered this, not the one I currently have.
So I was like Right.
Awesome.
Aaron ShilohAnd you would never and and listen.
You would never know that.
You'd have to think about every medical plan that's potential.
And you probably talk about insurance coverage with with, you know, what you deal with on a regular basis because I'm sure that some insurances don't wanna pay for the better pump and others do and and different treatments that are out there and are available for some patients and not to others and, you know, the the different tiers of of health care and medicine that we live with dependent upon this insurance concept that we've come to accept, which is probably a podcast for another day.
Scott BennerIt certainly is.
Aaron ShilohYeah.
It is really challenging that we do that.
But I will say we work with everybody.
We try to find solutions.
You know, even in situations like this, we offer, you know, cash options, payment options to the best of our ability.
Aaron ShilohIt's it's you know, I was told, I wish I could do something different.
Unfortunate even in your case, you do appear to peer, and the person falls back on their policy statement, and you speak to a doctor who's not in your field, might not even have any experience with this, and they read the piece of paper and say, we believe this treatment is what's called e and I experimental and investigative, and that's it.
Yeah.
And they're paid by the insurance company to be the adjudicator.
It's like in a trial where where I'm sue you in a civil lawsuit, but you pay the judge.
Scott BennerYeah.
The
Aaron Shilohjudge decides you pay them, and they decide which way it's going to go.
Like, how is that going to go?
Scott BennerYeah.
Aaron ShilohIt's clear you're in a position where it's not going to be in your favor.
Scott BennerYeah.
They offered me a peer to peer review, and I was like, in what world is that gonna end up in my favor?
It's it's you making the decision still.
Aaron ShilohProvide them with all the data that we want and which we have and we will do, but at the same time, they dismiss it as not enough.
And I think I discussed this with you, the kind of work that they want people to do.
Would you have undergone a what's called a sham procedure where I stick a catheter in your arteries to your rectum, but I don't embolize it?
And then I ask you later a month to three months, six months, a year, how are you doing?
And compare you to a patient who actually got an embolization, then take a do a thousand of those patients.
Aaron ShilohSo five hundred get embolized, five hundred don't, and then make an assessment.
Like, what patient's going to sign up to maybe have a sham procedure?
Nobody.
Not in The United States at least.
Scott BennerYeah.
No.
I hear you.
Well, doctor Shalu, I again, let me thank you very much for doing this.
I'm taking up enough of your time, but I do really appreciate you, helping me unburden myself the rest of the way from any embarrassment I felt about this because it's gone now.
Scott BennerI as I sit here and record this, I know how many people are gonna hear it.
So I I I know I'm not embarrassed anymore.
And I hope nobody else is too.
I hope if you're having a problem like this, that you don't run around hiding and and doing what I did.
I hope you just go get it taken care of.
Scott BennerIt wasn't that bad to show doctor Shiloh my butt.
Only had to do it one time.
And then, when the What's
Aaron Shilohnot yet?
Scott BennerYeah.
Yeah.
What yeah.
He's like, don't and then once we did the procedure, honestly, it was a it still felt like a very private thing.
Like, it wasn't, you didn't feel exposed during it or anything like that.
Scott BennerIt was it was really it just kind of easy to be perfectly honest.
So
Aaron ShilohOne last thing Yeah.
Scott, I'd like to say is that, I'm honored by every patient, and I'm honored to have been here with you.
And I also will offer to connect with anybody even if it's a matter of redirecting redirecting them to where they need to go.
You know, my goal is to help as many people as possible, with this disease and certainly the others that we described a little earlier as well.
Scott BennerYeah.
Reach out.
Doctor.
Shallow is a solid guy.
So thank you, man.
Scott BennerI really do appreciate your time.
Happy New Year.
Aaron ShilohHappy New Year.
Thanks for having me on.
Final Thoughts and Resources
Scott BennerOf course.
It's my pleasure.
I wanna thank USA Hemorrhoid Centers for sponsoring this episode of the Juice Box podcast and for all they did for me.
The pressure and seeing blood, it's not anything anybody wants to talk about.
But they're also not things you should ignore, which is why this episode is brought to you by USA Hemorrhoid Centers.
Scott BennerThey're leaders in nonsurgical hemorrhoid care.
They helped me, and they offer hemorrhoid artery embolization, which is a minimally invasive outpatient procedure that reduces hemorrhoid symptoms by treating the underlying blood flow rather than just masking discomfort.
USA Hemorrhoid Centers was a huge part of why I feel better, and they have multiple locations nationwide.
They accept most major insurance plans and make specialized care more accessible.
So if you've got some of the problems you heard me talking about today and it's interfering with your comfort, confidence, or daily routine, it may be time to explore a modern treatment option.
Scott BennerLearn more at usahemorrhoidcenters.com.
Get the relief that you deserve.
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Listen to what reviewers have said.
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